Busy times around here! Anyway, Jayden is doing AMAZING! He's eating better, for sure. Last week he ate (and loved!) some teriyaki chicken with broccoli. He also loved some BBQ shrimp and green beans on Saturday night. We are working on switching him from his absolute favorite cereal in the ENTIRE world, Fruity Pebbles (yikes!!!), to Cinnamon Chex. Eventually, I plan to replace his cereal with a bowl of homemade Gluten Free Granola mix, but I have to take baby steps with him.
On the school front, there's certainly been an improvement! He's coming home with COMPLETED lessons done correctly. He's coloring in the lines and even getting creative with colors. He is more attentive. He's focusing better. He still needs to move around to learn, but he is a boy and he's only five (almost 6!!), so that's normal. I don't think anyone should expect a child his age to sit still to learn. He went from only knowing about 4 or 5 of his high frequency words, to know all but about 9 of them. And they are up to about 28 words now, so that's great!
We've decided to eliminate dairy from his diet again to see if that will help as well. We just implemented this change last week and he's going to miss his yogurt :( I'm headed to the store now to replace his yogurt with Clif Kids fruit ropes. He loves them and they fit in the exact same spot in his Planet Box lunchbox that his yogurt tube used to fit in. It's going to take some time, but he is getting there!
Showing posts with label The J-Man. Show all posts
Showing posts with label The J-Man. Show all posts
Monday, November 5, 2012
Tuesday, October 16, 2012
Week 1 Update
Late with this update, but it's really hard trying to find time to sit at the computer these days ;)
Anyway, the 1st week was a good one for Jayden, although he did seem EXTREMELY emotional. His notes from school said that he was crying about every little thing. He did the same thing this past weekend. At a birthday party he cried several times and then admitted later to being bullied. The same thing at Sunday school. I think perhaps some kids are teasing him and now he's getting sensitive about it :( Not sure if any of this has to do with the supplements and/or diet changes or if it's just coincidental. His attention and focus is still not where it should be at his age, but I did notice an improvement. Also, he is very easy to get back on track and to calm down when he gets upset. We've heard lots of "Yes Ma'am" and "Yes Sir" accompanied with him following directions on the first time this past week, which has been a great change. He's still behind on his high function words for kindergarten, but it will be a slow and steady stride to get him at least on track b/c of his attention issues. Last night, he enjoyed reviewing, though, and I think he actually LEARNED 6 words as opposed to memorizing what they look like.
His biggest improvement last week, however, was in the foods he will eat. Jayden is 100% gluten free and has been since he was 2.5 yrs old. Rice is (or should I say, should be) a huge staple in his diet. Not only due to his gluten intolerance, but also because he's part of a Filipino family ;) lol. Well, Jayden used to scream at the sight of rice. We were able to solve the screaming issues long ago and he'd allow the rice to share a spot on his plate but he'd refuse to touch it. If we made him try some, he'd gag. Finally, we got him to start eating it but he'd only eat one grain at a time...I kid you not. So, I decided that rice would be one of the first foods I introduced in his EAT program. The first night was tough and involved me feeding him and we were at the table for an hour. The next day, he fed himself some rice at my mom's house. By Wednesday, he was easily filling a spoon with kid sized bites of rice and feeding himself with no problem. SUCCESS!
He's having no issues at all taking his supplements. The fish oil, he wants straight off a spoon b/c he said it makes his smoothie taste funny. He complained of the oily texture at first but now he doesn't care. He always asks for an entire banana in his smoothie so we struggle with getting the smoothie to freely flow through his straw. I'm going to get him a smoothie cup today. Also, I just purchased a PlanetBox lunch box from a friend of mine so we can start to send a healthier and fresher lunch for him. His first request was for celery sticks and they fit perfectly inside the lunch box.
Anyway, the 1st week was a good one for Jayden, although he did seem EXTREMELY emotional. His notes from school said that he was crying about every little thing. He did the same thing this past weekend. At a birthday party he cried several times and then admitted later to being bullied. The same thing at Sunday school. I think perhaps some kids are teasing him and now he's getting sensitive about it :( Not sure if any of this has to do with the supplements and/or diet changes or if it's just coincidental. His attention and focus is still not where it should be at his age, but I did notice an improvement. Also, he is very easy to get back on track and to calm down when he gets upset. We've heard lots of "Yes Ma'am" and "Yes Sir" accompanied with him following directions on the first time this past week, which has been a great change. He's still behind on his high function words for kindergarten, but it will be a slow and steady stride to get him at least on track b/c of his attention issues. Last night, he enjoyed reviewing, though, and I think he actually LEARNED 6 words as opposed to memorizing what they look like.
His biggest improvement last week, however, was in the foods he will eat. Jayden is 100% gluten free and has been since he was 2.5 yrs old. Rice is (or should I say, should be) a huge staple in his diet. Not only due to his gluten intolerance, but also because he's part of a Filipino family ;) lol. Well, Jayden used to scream at the sight of rice. We were able to solve the screaming issues long ago and he'd allow the rice to share a spot on his plate but he'd refuse to touch it. If we made him try some, he'd gag. Finally, we got him to start eating it but he'd only eat one grain at a time...I kid you not. So, I decided that rice would be one of the first foods I introduced in his EAT program. The first night was tough and involved me feeding him and we were at the table for an hour. The next day, he fed himself some rice at my mom's house. By Wednesday, he was easily filling a spoon with kid sized bites of rice and feeding himself with no problem. SUCCESS!
He's having no issues at all taking his supplements. The fish oil, he wants straight off a spoon b/c he said it makes his smoothie taste funny. He complained of the oily texture at first but now he doesn't care. He always asks for an entire banana in his smoothie so we struggle with getting the smoothie to freely flow through his straw. I'm going to get him a smoothie cup today. Also, I just purchased a PlanetBox lunch box from a friend of mine so we can start to send a healthier and fresher lunch for him. His first request was for celery sticks and they fit perfectly inside the lunch box.
Monday, October 8, 2012
Changes
So...It has been some time since I've updated this blog! Unfortunately, my wonderful husband was laid off in May and still hasn't been able to find employment. As you know, we were a single income family, but his job was always enough to keep us very comfortable. I've had to work in order to keep us afloat, here. So I've been pulling shifts at the gym daycare (which I absolutely love but I miss my baby a lot), booking tons of photography sessions, and selling Scentsy (which I've been quite successful at). I don't think that I could ever match what my husband was bringing home, but it does help us to keep this roof over our heads! On top of all of that, I'm also in school, online, completing my Psychology degree. All of that plus trying to be the best mom I can be to my two precious boys. It's exhausting, to say the least!
So you can see why I haven't had the time to update. However, we've come across an issue in our home that will require some journaling on my behalf so it may bring this blog back to life, just with a slightly different topic.
Just a little backstory: Elias was born almost 4 weeks early and he had the typical struggles of a late term preemie, but didn't require extensive care. He gained weight quickly, but of course always stayed on the lower end of the growth chart (He's 9 months and 16lbs now, at the 5th percentile). That was never a concern for us though b/c he nursed like a champ and now that he's eating solids he eats well. However, he seems to always get sick :( The Dr just associated it with him being a late term preemie. We found out at his 9 month well visit, though, that he's severely anemic. His Hg came back at 5.5 when normal range is 11 or above. The pediatrician simply recommended PolyViSol daily. I'd been struggling with anemia as well, and since I still breastfeed, I know that my lack of iron contributed to his. I found it strange that the Dr didn't recommend an iron rich diet since his levels were that low. Surely, he (and I) would benefit from it! This made me seriously evaluate the way we all eat at home. As I was thinking, I was overwhelmed by the fact that if Elias and I are both anemic despite the variety in our diets, then Jayden HAS to be deficient in so many areas b/c his diet is so limited (picky PICKY eater) and has been that way since he was 2.5 yrs old. I had been planning on putting Jayden in what I was calling "Food Boot Camp". I KNEW that Jayden had to start eating a wider variety of foods, but I was always waiting for the right time b/c I knew it wasn't going to be easy. Since he was 2.5, Jayden's diet mainly consists of (I'm embarrassed to share, but it's time for healing so I'm putting it all out there)hotdogs (we got him jennie-o turkey dogs to make me feel better),french fries, turkey rolls, beans&franks, and Nutella sandwiches on GF bread. For a while, he was on this vienna sausages kick, but I cut that out a long time ago b/c it was out of control. When I was sick and pregnant with the baby, I believe Jayden lived off turkey rolls b/c it was the easiest thing for his dad to feed him. Oh I forgot one...Fruity Pebbles cereal. It's like crack to him.
There you have it. That's what Jayden has been consuming for the past 3 yrs :*( Horrible. Junk. We expressed our concerns with the Dr and she would say that he was still on the growth chart so we should just give him multivitamins daily :eyeroll: Don't get me wrong, I love the boys' Dr but doctors in general do not give nutrition the credit that it deserves in our health and well being. She did refer us to a nutritionist who simply told me that it was a phase all kids go through and to give him pediasure. After 3 yrs of this, I think it's safe to say that this is not a phase and pediasure is not going to cut it when it comes to getting him all the nutrients and vitamins that he needs. So I knew it was time for a change. I had my butt kicked in to gear on Wednesday of last week though when Jayden's kindergarten teacher sent a letter home from school. It said that he's having a hard time keeping up with the kindergarten classwork. That he has a hard time understanding the instructions and cannot complete his assignments. He had been coming home with incomplete assignments or assignments that he'd done completely incorrect (i.e. number search to circle only the number 2, he'd circle every single number). We always made him complete the assignment or do it correctly at home and he has no problem doing it, without our help or instructions. I asked him why he couldn't do his work at school and he told me "It's too loud. They make my ears hurt." and he also says "I can't listen." which to me means, I can't focus. I know he has a huge nutritional gap that's causing these issues so I went in, head first, doing the research to heal both of my boys.
Elias has been pretty straight forward, as I've just been giving him naturally iron rich foods and he's eating them just fine (pancakes made with prune juice, apricots, bone broth, lentils, spinach, etc). Jayden, on the other hand, is going to be a process. That's why I wanted to use this blog to journal his progress.
The issues that we are currently dealing with and hoping will be resolved with nutrition include:
*hyperactivity
*inability to focus
*irritability
*fatigue
*little, to no appetite
*cognitive delay
*blotchy skin
*underweight
*GI issues
We headed out to the health food store and the vitamin shop on Thursday, for supplements to begin giving him immediately. He was already taking a multi vitamin, but we added the other's as of Thursday:
*Multivitamin-Chewy Panda Vites (We plan to change these to Nordic Berries when we eliminate gelatin hopefully within the next month)
*Probiotics-Udo's Choice Infant Probiotics-I got the powder form so that Elias can take it as well. This is essential in healing the gut and keeping it healthy with good bacteria.
*Fish Oil- We usually get Nordic Naturals but we are trying Carlson for Kids tomorrow to see if he can tolerate the taste better. Fish oil is important in brain development and helps to improve concentration and focus.
*Topical Cream for Neuro support-Neuro-Immune Stabilizer Compound. This compound is used to help with mood improvement & stabilization, focus & concentration, and organization skills. *Antioxidants- We are using two different antioxidants for Jayden. CellWise and Provex Plus which also helps with mental sharpness in addition to fighting free radicals. Antioxidants fight the free radicals (destructive molecules that damage your cells) in the body.
*Total Nutrition Drink Mix-X Balance Kid's Superfood. We make this into a smoothie for him and he drinks it once a day and loves it :) Gives him a full serving of fruit and veggies ;)
As for as his diet is concerned, it's going to be a work in progress for sure. I've started him on the E.A.T. program by Kelly Dorfmann It's pretty simple: Eliminate any possible foods causing reactions. Add one food at a time. Try one bite of this food each night for two weeks. So far, so good and it doesn't seem like we will need to drag each food on for 2 weeks. On Thursday night, I had a big talk with him about nutrition. I told him that he needed to eat more than just hot dogs if he wanted to grow up big and strong like "Spiderman". I also told him the honest truth, if you continue to eat only hotdogs everyday you won't be healthy. You'll be sick :( And always tired. I asked him if he would be willing to try new foods and he told me yes. That same night, I served him rice and brown gravy with some green peas. He eats green peas when we serve them to him. He just has a hard time eating rice, so I really only added that one new element to his plate. He was excited to try it and he even asked to sit at the big table with us for dinner (he usually sits at his small table beside us). Great idea! So he sat there and took 20 minutes to eat the tablespoon full of green peas that I gave him. He was eating one grain of rice at a time and he started to get frustrated when everyone else was done eating. So I helped him. An hour later, he had finished the entire tablespoon of rice and gravy. Sure it took much longer than that should have, but he ate it. Progress. And if I have to feed him to get him used to eating, I was prepared to do so. Friday night, I asked him what he wanted for dinner and he told me he wanted "real food", "no hot dogs"!! Woo Hoo! We ate left overs that night and he actually fed himself!. On Saturday, my mom cooked dirty rice (southern style rice dish), green peas, and baked chicken. I served Jayden a very small portion of everything and sat at the table prepared to help him. I asked him if he needed me and he said no, the proceeded to feed himself!! He didn't finish everything on his plate but he ate just about all of his rice! RICE!!! A food that he used to gag on! I was so impressed and I'm proud of him! He is going to do just fine :)
We've already started to eliminate some things such as artificial colors and flavorings, high fructose corn syrup, genetically modified foods, and processed foods. We plan to remove much more in the near future, but right now, getting him to actually EAT food is my priority. Once he is able to trust the food that he eats, then I will start to eliminate more.
As I update this blog, the updates will be based on his progress. Like I said, we started supplementing him on Thursday, My husband said that he noticed that Jayden was very calm and well behaved this weekend. I didn't think much of it b/c he hasn't been struggling with behavior much lately, so I just chopped it up to him having a good weekend. However, he got off the bus today with COMPLETED worksheets!! AND! AND!!! They were done CORRECTLY!!! He did it!! The teacher sent a note home that said "Jayden had a WONDERFUL day today. He did great in his academics!" She has no idea we started supplements so I don't see why she would make it a point to say that he did well in academics unless he truly did show her some real progress. Man, it makes me soooo happy! We are scheduled to meet with her tomorrow afternoon to discuss his issues with schoolwork and I plan to ask her if she did notice a change in his focus on today (and tomorrow) as opposed to the last few weeks. I expect her to say that she has noticed a change. Hopefully, he can adjust and be able to remain in his class with his friends and still be able to learn and do his work. I am very positive about his situation.
Nutrition ROCKS!!!
Just a little backstory: Elias was born almost 4 weeks early and he had the typical struggles of a late term preemie, but didn't require extensive care. He gained weight quickly, but of course always stayed on the lower end of the growth chart (He's 9 months and 16lbs now, at the 5th percentile). That was never a concern for us though b/c he nursed like a champ and now that he's eating solids he eats well. However, he seems to always get sick :( The Dr just associated it with him being a late term preemie. We found out at his 9 month well visit, though, that he's severely anemic. His Hg came back at 5.5 when normal range is 11 or above. The pediatrician simply recommended PolyViSol daily. I'd been struggling with anemia as well, and since I still breastfeed, I know that my lack of iron contributed to his. I found it strange that the Dr didn't recommend an iron rich diet since his levels were that low. Surely, he (and I) would benefit from it! This made me seriously evaluate the way we all eat at home. As I was thinking, I was overwhelmed by the fact that if Elias and I are both anemic despite the variety in our diets, then Jayden HAS to be deficient in so many areas b/c his diet is so limited (picky PICKY eater) and has been that way since he was 2.5 yrs old. I had been planning on putting Jayden in what I was calling "Food Boot Camp". I KNEW that Jayden had to start eating a wider variety of foods, but I was always waiting for the right time b/c I knew it wasn't going to be easy. Since he was 2.5, Jayden's diet mainly consists of (I'm embarrassed to share, but it's time for healing so I'm putting it all out there)hotdogs (we got him jennie-o turkey dogs to make me feel better),french fries, turkey rolls, beans&franks, and Nutella sandwiches on GF bread. For a while, he was on this vienna sausages kick, but I cut that out a long time ago b/c it was out of control. When I was sick and pregnant with the baby, I believe Jayden lived off turkey rolls b/c it was the easiest thing for his dad to feed him. Oh I forgot one...Fruity Pebbles cereal. It's like crack to him.
There you have it. That's what Jayden has been consuming for the past 3 yrs :*( Horrible. Junk. We expressed our concerns with the Dr and she would say that he was still on the growth chart so we should just give him multivitamins daily :eyeroll: Don't get me wrong, I love the boys' Dr but doctors in general do not give nutrition the credit that it deserves in our health and well being. She did refer us to a nutritionist who simply told me that it was a phase all kids go through and to give him pediasure. After 3 yrs of this, I think it's safe to say that this is not a phase and pediasure is not going to cut it when it comes to getting him all the nutrients and vitamins that he needs. So I knew it was time for a change. I had my butt kicked in to gear on Wednesday of last week though when Jayden's kindergarten teacher sent a letter home from school. It said that he's having a hard time keeping up with the kindergarten classwork. That he has a hard time understanding the instructions and cannot complete his assignments. He had been coming home with incomplete assignments or assignments that he'd done completely incorrect (i.e. number search to circle only the number 2, he'd circle every single number). We always made him complete the assignment or do it correctly at home and he has no problem doing it, without our help or instructions. I asked him why he couldn't do his work at school and he told me "It's too loud. They make my ears hurt." and he also says "I can't listen." which to me means, I can't focus. I know he has a huge nutritional gap that's causing these issues so I went in, head first, doing the research to heal both of my boys.
Elias has been pretty straight forward, as I've just been giving him naturally iron rich foods and he's eating them just fine (pancakes made with prune juice, apricots, bone broth, lentils, spinach, etc). Jayden, on the other hand, is going to be a process. That's why I wanted to use this blog to journal his progress.
The issues that we are currently dealing with and hoping will be resolved with nutrition include:
*hyperactivity
*inability to focus
*irritability
*fatigue
*little, to no appetite
*cognitive delay
*blotchy skin
*underweight
*GI issues
We headed out to the health food store and the vitamin shop on Thursday, for supplements to begin giving him immediately. He was already taking a multi vitamin, but we added the other's as of Thursday:
*Multivitamin-Chewy Panda Vites (We plan to change these to Nordic Berries when we eliminate gelatin hopefully within the next month)
*Probiotics-Udo's Choice Infant Probiotics-I got the powder form so that Elias can take it as well. This is essential in healing the gut and keeping it healthy with good bacteria.
*Fish Oil- We usually get Nordic Naturals but we are trying Carlson for Kids tomorrow to see if he can tolerate the taste better. Fish oil is important in brain development and helps to improve concentration and focus.
*Topical Cream for Neuro support-Neuro-Immune Stabilizer Compound. This compound is used to help with mood improvement & stabilization, focus & concentration, and organization skills. *Antioxidants- We are using two different antioxidants for Jayden. CellWise and Provex Plus which also helps with mental sharpness in addition to fighting free radicals. Antioxidants fight the free radicals (destructive molecules that damage your cells) in the body.
*Total Nutrition Drink Mix-X Balance Kid's Superfood. We make this into a smoothie for him and he drinks it once a day and loves it :) Gives him a full serving of fruit and veggies ;)
As for as his diet is concerned, it's going to be a work in progress for sure. I've started him on the E.A.T. program by Kelly Dorfmann It's pretty simple: Eliminate any possible foods causing reactions. Add one food at a time. Try one bite of this food each night for two weeks. So far, so good and it doesn't seem like we will need to drag each food on for 2 weeks. On Thursday night, I had a big talk with him about nutrition. I told him that he needed to eat more than just hot dogs if he wanted to grow up big and strong like "Spiderman". I also told him the honest truth, if you continue to eat only hotdogs everyday you won't be healthy. You'll be sick :( And always tired. I asked him if he would be willing to try new foods and he told me yes. That same night, I served him rice and brown gravy with some green peas. He eats green peas when we serve them to him. He just has a hard time eating rice, so I really only added that one new element to his plate. He was excited to try it and he even asked to sit at the big table with us for dinner (he usually sits at his small table beside us). Great idea! So he sat there and took 20 minutes to eat the tablespoon full of green peas that I gave him. He was eating one grain of rice at a time and he started to get frustrated when everyone else was done eating. So I helped him. An hour later, he had finished the entire tablespoon of rice and gravy. Sure it took much longer than that should have, but he ate it. Progress. And if I have to feed him to get him used to eating, I was prepared to do so. Friday night, I asked him what he wanted for dinner and he told me he wanted "real food", "no hot dogs"!! Woo Hoo! We ate left overs that night and he actually fed himself!. On Saturday, my mom cooked dirty rice (southern style rice dish), green peas, and baked chicken. I served Jayden a very small portion of everything and sat at the table prepared to help him. I asked him if he needed me and he said no, the proceeded to feed himself!! He didn't finish everything on his plate but he ate just about all of his rice! RICE!!! A food that he used to gag on! I was so impressed and I'm proud of him! He is going to do just fine :)
We've already started to eliminate some things such as artificial colors and flavorings, high fructose corn syrup, genetically modified foods, and processed foods. We plan to remove much more in the near future, but right now, getting him to actually EAT food is my priority. Once he is able to trust the food that he eats, then I will start to eliminate more.
As I update this blog, the updates will be based on his progress. Like I said, we started supplementing him on Thursday, My husband said that he noticed that Jayden was very calm and well behaved this weekend. I didn't think much of it b/c he hasn't been struggling with behavior much lately, so I just chopped it up to him having a good weekend. However, he got off the bus today with COMPLETED worksheets!! AND! AND!!! They were done CORRECTLY!!! He did it!! The teacher sent a note home that said "Jayden had a WONDERFUL day today. He did great in his academics!" She has no idea we started supplements so I don't see why she would make it a point to say that he did well in academics unless he truly did show her some real progress. Man, it makes me soooo happy! We are scheduled to meet with her tomorrow afternoon to discuss his issues with schoolwork and I plan to ask her if she did notice a change in his focus on today (and tomorrow) as opposed to the last few weeks. I expect her to say that she has noticed a change. Hopefully, he can adjust and be able to remain in his class with his friends and still be able to learn and do his work. I am very positive about his situation.
Nutrition ROCKS!!!
Friday, March 11, 2011
Huge update on Jayden
First thing's first...Jayden hasn't had any visible seizures since JANUARY!!!! PRAISE THE LORD!! We had a followup visit with his neurologist on last week and it was a 5 minute visit! That's just how well he is doing :) We discussed the fact that the reading from his 24 hour EEG was, indeed, completely lost due to a hospital system failure. However, she was able to check with the nurses and they reported no seizures. The hospital is going to give him a FREE repeat 24 hour EEG, but his Dr said that since he's doing so well she wants us to hang on to that and we will use it if his seizures happen to return. But for now, she scheduled him for a sedated EEG next month b/c she still needs to see for herself where his seizures are coming from.
On the medicine front, he is almost completely weaned off of ALL unnecessary medications! He is currently taking 2ml of Trileptal in the AM and 4ml at night. This is a tremendous decrease from the 9ml twice a day that he had been taking for months! We have certainly noticed a dramatic difference in his behavior...at home. At home, he listens so well. Responds with "Yes ma'am.", (still working on yes sir, although he does say it when he's playing military with daddy, lol)and "Ok mommy" and "Ok Daddy." At home, he talks better. Last night he looked in his shoe and then ran from it and screamed "Mommy, a spider!! It's in my shoe!" At home, he is more calm. He can actually sit still and watch a movie without swinging his legs or beating on something the entire time. Last night, he picked out a book to read before bed and it was a Berenstein Bears book. For ages 5 and up, so a bit long. However, he sat through the entire story and didn't wiggle or interrupt ONCE! I was actually preparing myself for him to get bored and when I got to the end I exhaled and congratulated him! He was so confused over the celebration, but last night was epic. LOL! At home, he doesn't have tantrums anymore. Barely gets timeouts. Anything he gets in trouble for is usual 4 yr old boy stuff like not cleaning his toys up or talking back. Also, he is sleeping better!! For the longest time, Jayden was waking at 6:45, as soon as the sun came up. For many kids, this is the usual and I understand that, but Jayden has been sleeping until 8:30-9 since he was an infant. Waking at 6:45 (and many times in the middle of the night as well) was making him very cranky and tired, which added to his behavior issues. Now he is back to sleeping until 8:30 and I'm sure that has had a positive impact on his behavior. At home.
In public, it's still a struggle. Actually, I take that back. It's not in public because he does absolutely fine in crowded stores and he surprised us all on Fat Tuesday in the huge crowds. He doesn't do well in SOCIAL situations. He does not understand how to behave around large groups of children. So of course he is still getting into trouble at school and anywhere else there is a large amount of kids. Wednesday night, my husband brought him to my job while I was at work, to let him play in the childcare room. My husband didn't expect Jayden to act out b/c he had been doing so well. When Jayden got there, there were 14 kids ranging in age from 5-11. They were all over. Jayden does not quite know how to play with other kids, especially bigger ones. other than rough housing. And he gets too rough. He immediately jumped on top of one of the older kids. Then proceeded to grab a toy power tool and "stabbed" the boy with it. The older boy found it hilarious (I guess it is funny to see a little 4 yr old play so rough??) so he laughed and Jayden continued. I pulled him away and reminded him to play gently or he'd have to go home and Jayden said "Yes ma'am" but immediately went back to the boy and karate kicked him. I called my husband to come get him, 5 minutes after dropping him off. It was frustrating for both of us. I later asked Jayden why he didn't listen and he told me "I don't know. I sorry mommy." That hurt me, b/c I know it was the truth. That night, anything else going on in my life was pushed aside. My mind went directly to how I can help Jayden and it won't switch gears until I am able to help him.
I researched behavior charts. I wasn't able to find one specific enough for Jayden and one he'd understand and be excited about, so I made my own:
Jayden LOVES to swim. Summer camp at my job starts at the end of May. They swim 3 days a week. It would be very fun for him to attend and very convenient for me as well, to have him right there at work with me. However, there is no way he can go if he's constantly hurting people and not listening to the counselors. My goal was to get him to understand that in order to go to camp and get to swim all summer, he has to remember to play nicely and to listen to the counselors. On days that he hits, he gets a sad face and he has to remove one of the 4 swimming pictures. On days that he doesn't hit, he gets a smiley face and gets to replace a swimming picture (if any are missing). He gets really excited about the chart. There's one major problem though. It's not going to work for him :(
After researching behavior charts, I also downloaded The Explosive Child, by Dr Ross Greene onto my Nook. I immediately started to read through the first few pages, but as each page described my child to the "T", I couldn't put it down. I remember getting to a certain page and reading something that took my breath away:
"Parent: 'We've talked about this a million times...WHY DON'T YOU DO WHAT YOU'RE TOLD? WHAT ARE YOU SO ANGRY ABOUT?'
Explosive Child: 'I don't know'"
excerpt from The Explosive Child
Just hours earlier, I'd had the exact same discussion with my 4 yr old and I rec'd the exact same response. Greene says in his book, "Children do well if the CAN." He also went on to explain certain skills that are needed in order to go on with each day without being extremely frustrated and explosive all the time. Children with developmental delays (like Jayden) lack many of these skills. Executive skills, language processing skills, emotion regulation skills, cognitive flexibility skills, and social skills. Jayden is lacking every.single.one. Take executive skills, for example. Executive skills include the ability to shift from one mind frame to another. This occurs when you shift from one environment to another. Jayden does not transition well at all and this is why. The book explains a child going from recess into reading class. The child who lacks executive skills will still be loud and unruly in reading class. Totally Jayden :( We already know he is delayed with language and has problems with emotion regulation, cognitive skills and social skills. Since they all are SKILLS, they need to be TAUGHT. Not medicated to make up for the lack of skills, and not rewarded for days that the lack of skills didn't hugely impact the child's day, giving you a false security that your child is "learning".
I haven't gotten to the part where we "teach" Jayden these skills, but I do know that we will need the help of a private child psychologist b/c the one at school is definitely not helping him much at all (I'm also planning to place him in another school in August). My hope is that the psychologist will be willing to watch Jayden in different social interactions and help us to TEACH him the skills he lacks. I don't expect him to learn all of this overnight and I do expect him to still have problems going into summer camp (if I can even trust him to attend), but I do know that I won't stop until he is well on the road to success.
As far as the behavior chart above...I like it and Jayden is SO excited about it, so we will still use it. I haven't read yet that it will hurt anything, just that it won't help him b/c he simply LACKS the skills to do well in social situations. It's not that he doesn't want to do well, it's that he CAN'T. So I have to remember that. But if I can reward him for good days, I will. I am, however, rethinking how I'm going to handle taking away the swimming pictures. If it seems to upset him too much, I will re evaluate. He can't help it and he knows it. He truly wants to do better. Poor thing. But he knows that his mommy will not stop until he is able to do better.
Mommy loves you Jayden :)
On the medicine front, he is almost completely weaned off of ALL unnecessary medications! He is currently taking 2ml of Trileptal in the AM and 4ml at night. This is a tremendous decrease from the 9ml twice a day that he had been taking for months! We have certainly noticed a dramatic difference in his behavior...at home. At home, he listens so well. Responds with "Yes ma'am.", (still working on yes sir, although he does say it when he's playing military with daddy, lol)and "Ok mommy" and "Ok Daddy." At home, he talks better. Last night he looked in his shoe and then ran from it and screamed "Mommy, a spider!! It's in my shoe!" At home, he is more calm. He can actually sit still and watch a movie without swinging his legs or beating on something the entire time. Last night, he picked out a book to read before bed and it was a Berenstein Bears book. For ages 5 and up, so a bit long. However, he sat through the entire story and didn't wiggle or interrupt ONCE! I was actually preparing myself for him to get bored and when I got to the end I exhaled and congratulated him! He was so confused over the celebration, but last night was epic. LOL! At home, he doesn't have tantrums anymore. Barely gets timeouts. Anything he gets in trouble for is usual 4 yr old boy stuff like not cleaning his toys up or talking back. Also, he is sleeping better!! For the longest time, Jayden was waking at 6:45, as soon as the sun came up. For many kids, this is the usual and I understand that, but Jayden has been sleeping until 8:30-9 since he was an infant. Waking at 6:45 (and many times in the middle of the night as well) was making him very cranky and tired, which added to his behavior issues. Now he is back to sleeping until 8:30 and I'm sure that has had a positive impact on his behavior. At home.
In public, it's still a struggle. Actually, I take that back. It's not in public because he does absolutely fine in crowded stores and he surprised us all on Fat Tuesday in the huge crowds. He doesn't do well in SOCIAL situations. He does not understand how to behave around large groups of children. So of course he is still getting into trouble at school and anywhere else there is a large amount of kids. Wednesday night, my husband brought him to my job while I was at work, to let him play in the childcare room. My husband didn't expect Jayden to act out b/c he had been doing so well. When Jayden got there, there were 14 kids ranging in age from 5-11. They were all over. Jayden does not quite know how to play with other kids, especially bigger ones. other than rough housing. And he gets too rough. He immediately jumped on top of one of the older kids. Then proceeded to grab a toy power tool and "stabbed" the boy with it. The older boy found it hilarious (I guess it is funny to see a little 4 yr old play so rough??) so he laughed and Jayden continued. I pulled him away and reminded him to play gently or he'd have to go home and Jayden said "Yes ma'am" but immediately went back to the boy and karate kicked him. I called my husband to come get him, 5 minutes after dropping him off. It was frustrating for both of us. I later asked Jayden why he didn't listen and he told me "I don't know. I sorry mommy." That hurt me, b/c I know it was the truth. That night, anything else going on in my life was pushed aside. My mind went directly to how I can help Jayden and it won't switch gears until I am able to help him.
I researched behavior charts. I wasn't able to find one specific enough for Jayden and one he'd understand and be excited about, so I made my own:
Jayden LOVES to swim. Summer camp at my job starts at the end of May. They swim 3 days a week. It would be very fun for him to attend and very convenient for me as well, to have him right there at work with me. However, there is no way he can go if he's constantly hurting people and not listening to the counselors. My goal was to get him to understand that in order to go to camp and get to swim all summer, he has to remember to play nicely and to listen to the counselors. On days that he hits, he gets a sad face and he has to remove one of the 4 swimming pictures. On days that he doesn't hit, he gets a smiley face and gets to replace a swimming picture (if any are missing). He gets really excited about the chart. There's one major problem though. It's not going to work for him :(
After researching behavior charts, I also downloaded The Explosive Child, by Dr Ross Greene onto my Nook. I immediately started to read through the first few pages, but as each page described my child to the "T", I couldn't put it down. I remember getting to a certain page and reading something that took my breath away:
"Parent: 'We've talked about this a million times...WHY DON'T YOU DO WHAT YOU'RE TOLD? WHAT ARE YOU SO ANGRY ABOUT?'
Explosive Child: 'I don't know'"
excerpt from The Explosive Child
Just hours earlier, I'd had the exact same discussion with my 4 yr old and I rec'd the exact same response. Greene says in his book, "Children do well if the CAN." He also went on to explain certain skills that are needed in order to go on with each day without being extremely frustrated and explosive all the time. Children with developmental delays (like Jayden) lack many of these skills. Executive skills, language processing skills, emotion regulation skills, cognitive flexibility skills, and social skills. Jayden is lacking every.single.one. Take executive skills, for example. Executive skills include the ability to shift from one mind frame to another. This occurs when you shift from one environment to another. Jayden does not transition well at all and this is why. The book explains a child going from recess into reading class. The child who lacks executive skills will still be loud and unruly in reading class. Totally Jayden :( We already know he is delayed with language and has problems with emotion regulation, cognitive skills and social skills. Since they all are SKILLS, they need to be TAUGHT. Not medicated to make up for the lack of skills, and not rewarded for days that the lack of skills didn't hugely impact the child's day, giving you a false security that your child is "learning".
I haven't gotten to the part where we "teach" Jayden these skills, but I do know that we will need the help of a private child psychologist b/c the one at school is definitely not helping him much at all (I'm also planning to place him in another school in August). My hope is that the psychologist will be willing to watch Jayden in different social interactions and help us to TEACH him the skills he lacks. I don't expect him to learn all of this overnight and I do expect him to still have problems going into summer camp (if I can even trust him to attend), but I do know that I won't stop until he is well on the road to success.
As far as the behavior chart above...I like it and Jayden is SO excited about it, so we will still use it. I haven't read yet that it will hurt anything, just that it won't help him b/c he simply LACKS the skills to do well in social situations. It's not that he doesn't want to do well, it's that he CAN'T. So I have to remember that. But if I can reward him for good days, I will. I am, however, rethinking how I'm going to handle taking away the swimming pictures. If it seems to upset him too much, I will re evaluate. He can't help it and he knows it. He truly wants to do better. Poor thing. But he knows that his mommy will not stop until he is able to do better.
Mommy loves you Jayden :)
Thursday, February 24, 2011
WOW!!
I have so much to update here on the blog, but first I have to brag about my sweet boy!
He hasn't had a seizure at all this entire month, PRAISE GOD!! However, his behavior was spiraling out of control and he was continuously bringing home bad reports from school and they mentioned that his therapists are not able to get through his behaviors during their sessions with him. He's also been out of control in every single social environment. There is no technique we can use to control him at all. We took him in on Friday of last week for an evaluation with the dev. pediatrician b/c we were told that ADHD symptoms show up at age 4. She immediately noticed that Jayden regressed a bit with his language (he NEVER talks in social interactions, only at home), and that his behavior was simply out of control. He was nice and calm when it was just us in the room, but as soon as the Dr entered, he screamed, banged toys on the floor, slid himself across the floor, and made loud animal sounds the entire time. It was very hard to even talk to the Dr, but it was what she needed to see. He quieted down when she talked to him. In a nutshell, she still agrees (even moreso now) that he is NOT autistic and that it is still too early to say that his behaviors are linked to ADHD. From what she saw, his behaviors are attention seeking and impulsive. She agrees that it may be due to the large amount of seizure meds he's been on, but she can't say for sure b/c she doesn't work with medications and side effects. However, she wants to re evaluate him next month after he weans off more of the meds.
I emailed his neurologist yesterday morning and she gave us the ok to start weaning off Trileptal and sent us a weaning schedule. He went down by 2ml, which is a pretty large amount. Today he went to school and when we picked him up, both his teacher and the teacher's aide came out and said "Wow!! Jayden had a wonderful day today! No screaming fits and no aggression at all!" They send the kids home with a behavior report daily with the following categories:
Attended to tasks.
Attended with (visual) cues.
Difficulty attending.
I actually just had to run downstairs to see what the first one was b/c Jayden has NEVER had that report this entire school year. 90% of the time he'd get difficulty attending and the other times he'd get attended with cues and then notes about bad behaviors. Well, we checked his bag today and his form said "ATTENDED TO TASKS" and the teacher wrote in the remarks section "Jayden was so much calmer today!! :) "
WOW WOW WOW!!! We were SO PROUD OF HIM!!! We made a very big deal out of it and took him for ice cream! We called Nana and she congratulated him over the phone. You could see the pride in his eyes :) I'm not sure what the odds are of his behavior turning around that quickly by simply reducing the amount of a medication, but he was on a very high dose, so it is possible. Today could have been a fluke. It could have been a coincidence. But he did wonderful today and it doesn't matter to us why. What matters is that he CAN do it and he DID do it! So today, we celebrate!
He hasn't had a seizure at all this entire month, PRAISE GOD!! However, his behavior was spiraling out of control and he was continuously bringing home bad reports from school and they mentioned that his therapists are not able to get through his behaviors during their sessions with him. He's also been out of control in every single social environment. There is no technique we can use to control him at all. We took him in on Friday of last week for an evaluation with the dev. pediatrician b/c we were told that ADHD symptoms show up at age 4. She immediately noticed that Jayden regressed a bit with his language (he NEVER talks in social interactions, only at home), and that his behavior was simply out of control. He was nice and calm when it was just us in the room, but as soon as the Dr entered, he screamed, banged toys on the floor, slid himself across the floor, and made loud animal sounds the entire time. It was very hard to even talk to the Dr, but it was what she needed to see. He quieted down when she talked to him. In a nutshell, she still agrees (even moreso now) that he is NOT autistic and that it is still too early to say that his behaviors are linked to ADHD. From what she saw, his behaviors are attention seeking and impulsive. She agrees that it may be due to the large amount of seizure meds he's been on, but she can't say for sure b/c she doesn't work with medications and side effects. However, she wants to re evaluate him next month after he weans off more of the meds.
I emailed his neurologist yesterday morning and she gave us the ok to start weaning off Trileptal and sent us a weaning schedule. He went down by 2ml, which is a pretty large amount. Today he went to school and when we picked him up, both his teacher and the teacher's aide came out and said "Wow!! Jayden had a wonderful day today! No screaming fits and no aggression at all!" They send the kids home with a behavior report daily with the following categories:
Attended to tasks.
Attended with (visual) cues.
Difficulty attending.
I actually just had to run downstairs to see what the first one was b/c Jayden has NEVER had that report this entire school year. 90% of the time he'd get difficulty attending and the other times he'd get attended with cues and then notes about bad behaviors. Well, we checked his bag today and his form said "ATTENDED TO TASKS" and the teacher wrote in the remarks section "Jayden was so much calmer today!! :) "
WOW WOW WOW!!! We were SO PROUD OF HIM!!! We made a very big deal out of it and took him for ice cream! We called Nana and she congratulated him over the phone. You could see the pride in his eyes :) I'm not sure what the odds are of his behavior turning around that quickly by simply reducing the amount of a medication, but he was on a very high dose, so it is possible. Today could have been a fluke. It could have been a coincidence. But he did wonderful today and it doesn't matter to us why. What matters is that he CAN do it and he DID do it! So today, we celebrate!
Monday, January 24, 2011
Definitely not what I imagined it to be...
Motherhood, that is...
I knew I wanted to be a mommy since I was at least 7 yrs old. I loved helping to take care of my younger brother. When my older brother left elementary school for middle school, it left me in charge and I was so proud of that!. I started babysitting at 9 yrs old (with mom home) and had my very first official babysitting job when I turned 12 yrs old. Actually, I had TWO of them. I watched 2 little kids, who lived down the street from our house, after school each day and I babysat 2 little ones on the weekends. I LOVED being the caregiver. I couldn't wait to have kids of my own someday (when I was old enough of course!!).
When I imagined what motherhood would be like, I imagined myself and my child singing and dancing together. Reading stories together. Me teaching my baby the alphabet and how to count to 10 in both english and spanish. Going to the park. Weekend trips to the zoo, maybe even on the public transportation bus like me and my grandmother used to do. Going to playgroups. Fieldtrips. Days filled with laughter and smiles.
Jayden and I have done ALL OF THE ABOVE. However, every single one of those things have proven to be difficult for him, and in turn, for me. He doesn't enjoy being sang to. He's finally to a point where I can read a really short story to him, but only on certain days and those days are few and far in between. I did teach my baby the alphabet...he forgot them...he regressed. That definitely wasn't a part of my fantasy. It's hard to go to parks anymore b/c he cannot tolerate the sun, even if it's cold out. The zoo is just a sensory overload nightmare for him. We gave up on playgroups b/c he never fit in and the local playgroup here definitely wasn't as understanding to his behaviors as our beloved playgroup back in MS. We avoid fieldtrips for the same reason we have to avoid the zoo...sensory overload. We DEFINITELY have days filled with laughter and smiles, but we also have our fair share of days filled with sadness, fear, tears and dispair :( That certainly wasn't a part of my childhood fantasy.
Am I sad that it's not exactly the way I expected it to be? Yes.
Would I change anything if I could? Heck yeah! I'd give anything to end my baby's suffering and constant struggle to try and fit in to a world where things just make no sense to him.
Am I envious of the parents who paint this perfect picture of what motherhood in their home is like? Yes, I do. Facebook makes this incredibly hard for me b/c I have several mom friends who brag and boast on how wonderful their kids are. On bad days, this hurts the most.
Am I angry at God for putting us in this situation, after years of battling infertility and praying for a child? No.
Actually, I am grateful. The devil clouds my mind at times and I often catch myself thinking, "Why me Lord?" "Why us?" Then I am reminded that He chose us because we CAN. I wanted a picture perfect motherhood. Jayden needed two strong, devoted parents. God had a plan. It didn't match my fantasy at all. But He knows us better than we know ourselves. Had you asked me, before I became a parent, what I would do if I found out that my child had celiac disease, a chromosome deletion, epilepsy, autistic behaviors, and a host of sensory issues I would have said "There is no way in HELL I could handle that! I just couldn't do it." Heck, you would have lost me at Celiac disease b/c before Jayden, anything that ended with disease was just too much for me to handle.
As I sit here in this hospital tonight, watching my little boy with electrodes protruding from his head while he sits in the hospital bed playing with his action figures, I think of how far I've come. I went from fantasizing about running through fields playing catch, smiling ear to ear, to not even flinching when I tell someone that my child has a disease. Or that he's lethargic and clammy b/c he just had a seizure. Or that he cannot hold a conversation with them just yet b/c he is delayed due to a genetic disorder. It's my life. And I am handling it, even though I would have never believed I could handle something of this extent. Don't be fooled. I have my fair share of bad days. Some days I stay in bed and cry all day. Several nights I don't sleep a wink b/c I'm too busy worrying about my baby's future. Some days I raise my voice more than I'd like to. Many days, I worry too much about what other people think. But in the end, I am succeeding at one thing, and that's being a good mommy to him no matter what.
Sometimes I think to myself "What if motherhood would have been exactly as I'd imagined it to be?", then I realize just how ignorant I would be. I wouldn't understand why any one would want a break from their child. I'd continue to judge those parents in WalMart whose kids pitch fits over the simplest things. I wouldn't have a clue about sensory needs (most kids DO have sensory issues and many parents just overlook them b/c they have no idea). Had motherhood been exactly what I'd imagined it to be, I would take a lot of days with Jayden for granted. Jayden has taught us to celebrate EVERDAY. Not just once a year. We celebrate every single day. We celebrate the smallest of victories like remembering one of those alphabets that he forgot. Or finally being able to CLEARLY say a word that he'd been struggling with. We even celebrate him pointing to a picture and using a sentence to tell what's going on in that picture. At 4 yrs old, people don't understand why we get so excited about things like that but that's their loss. Something they take for granted b/c they have yet to meet a child like our Jayden. What he has taught us is worth more than any perfect picture of motherhood. But there is one thing about my fantasized motherhood that is exactly how I imagined it and maybe even more...just how much he has filled my heart with love. And my UNCONDITIONAL love for him! Thank you, God, for trusting me with one of your most prized angels!!
I knew I wanted to be a mommy since I was at least 7 yrs old. I loved helping to take care of my younger brother. When my older brother left elementary school for middle school, it left me in charge and I was so proud of that!. I started babysitting at 9 yrs old (with mom home) and had my very first official babysitting job when I turned 12 yrs old. Actually, I had TWO of them. I watched 2 little kids, who lived down the street from our house, after school each day and I babysat 2 little ones on the weekends. I LOVED being the caregiver. I couldn't wait to have kids of my own someday (when I was old enough of course!!).
When I imagined what motherhood would be like, I imagined myself and my child singing and dancing together. Reading stories together. Me teaching my baby the alphabet and how to count to 10 in both english and spanish. Going to the park. Weekend trips to the zoo, maybe even on the public transportation bus like me and my grandmother used to do. Going to playgroups. Fieldtrips. Days filled with laughter and smiles.
Jayden and I have done ALL OF THE ABOVE. However, every single one of those things have proven to be difficult for him, and in turn, for me. He doesn't enjoy being sang to. He's finally to a point where I can read a really short story to him, but only on certain days and those days are few and far in between. I did teach my baby the alphabet...he forgot them...he regressed. That definitely wasn't a part of my fantasy. It's hard to go to parks anymore b/c he cannot tolerate the sun, even if it's cold out. The zoo is just a sensory overload nightmare for him. We gave up on playgroups b/c he never fit in and the local playgroup here definitely wasn't as understanding to his behaviors as our beloved playgroup back in MS. We avoid fieldtrips for the same reason we have to avoid the zoo...sensory overload. We DEFINITELY have days filled with laughter and smiles, but we also have our fair share of days filled with sadness, fear, tears and dispair :( That certainly wasn't a part of my childhood fantasy.
Am I sad that it's not exactly the way I expected it to be? Yes.
Would I change anything if I could? Heck yeah! I'd give anything to end my baby's suffering and constant struggle to try and fit in to a world where things just make no sense to him.
Am I envious of the parents who paint this perfect picture of what motherhood in their home is like? Yes, I do. Facebook makes this incredibly hard for me b/c I have several mom friends who brag and boast on how wonderful their kids are. On bad days, this hurts the most.
Am I angry at God for putting us in this situation, after years of battling infertility and praying for a child? No.
Actually, I am grateful. The devil clouds my mind at times and I often catch myself thinking, "Why me Lord?" "Why us?" Then I am reminded that He chose us because we CAN. I wanted a picture perfect motherhood. Jayden needed two strong, devoted parents. God had a plan. It didn't match my fantasy at all. But He knows us better than we know ourselves. Had you asked me, before I became a parent, what I would do if I found out that my child had celiac disease, a chromosome deletion, epilepsy, autistic behaviors, and a host of sensory issues I would have said "There is no way in HELL I could handle that! I just couldn't do it." Heck, you would have lost me at Celiac disease b/c before Jayden, anything that ended with disease was just too much for me to handle.
As I sit here in this hospital tonight, watching my little boy with electrodes protruding from his head while he sits in the hospital bed playing with his action figures, I think of how far I've come. I went from fantasizing about running through fields playing catch, smiling ear to ear, to not even flinching when I tell someone that my child has a disease. Or that he's lethargic and clammy b/c he just had a seizure. Or that he cannot hold a conversation with them just yet b/c he is delayed due to a genetic disorder. It's my life. And I am handling it, even though I would have never believed I could handle something of this extent. Don't be fooled. I have my fair share of bad days. Some days I stay in bed and cry all day. Several nights I don't sleep a wink b/c I'm too busy worrying about my baby's future. Some days I raise my voice more than I'd like to. Many days, I worry too much about what other people think. But in the end, I am succeeding at one thing, and that's being a good mommy to him no matter what.
Sometimes I think to myself "What if motherhood would have been exactly as I'd imagined it to be?", then I realize just how ignorant I would be. I wouldn't understand why any one would want a break from their child. I'd continue to judge those parents in WalMart whose kids pitch fits over the simplest things. I wouldn't have a clue about sensory needs (most kids DO have sensory issues and many parents just overlook them b/c they have no idea). Had motherhood been exactly what I'd imagined it to be, I would take a lot of days with Jayden for granted. Jayden has taught us to celebrate EVERDAY. Not just once a year. We celebrate every single day. We celebrate the smallest of victories like remembering one of those alphabets that he forgot. Or finally being able to CLEARLY say a word that he'd been struggling with. We even celebrate him pointing to a picture and using a sentence to tell what's going on in that picture. At 4 yrs old, people don't understand why we get so excited about things like that but that's their loss. Something they take for granted b/c they have yet to meet a child like our Jayden. What he has taught us is worth more than any perfect picture of motherhood. But there is one thing about my fantasized motherhood that is exactly how I imagined it and maybe even more...just how much he has filled my heart with love. And my UNCONDITIONAL love for him! Thank you, God, for trusting me with one of your most prized angels!!
Tuesday, January 4, 2011
Appointment with new neurologist
So, finally, after exactly 2 LONG months of having no neurologist at all for Jayden, he had his appointment with the new one over at Children's hospital. Of course, it wasn't smooth sailing, although I'm beginning to believe it's some sort of Johnson family omen. Or perhaps the devil trying to see just how hard I am willing to fight for my son. Long story short, Jayden's Tricare referral got lost in the shuffle of paperwork and daily faxes. New Orleans is very low on pediatric neurologists so the offices are jam packed. That's when you have to depend on those computer systems. However, in order to depend on one, you gotta know how to USE one! The receptionist at the neurology clinic asked me to call the general pedi to get it faxed over. The nurse over at the pedi's office couldn't locate the referral for the Dr we were scheduled to see. Instead of returning my call, she just didn't do anything. I called twice and the receptionist called the 3rd time. Still no referral. The neuro nurse called and the nurse at the pediatrician's office told her that we didn't have a referral to see Dr. C, it was for another Dr. So the nurse came out and told us that we were scheduled to see the wrong Dr and that we'd have to see Dr. M next week. Oh hell no!! See, we were scheduled all along to see Dr. M this morning at 10am. When Jayden was discharged from the hospital last week, we rec'd a call from the clinic stating that we should not come to the appt to see Dr. M at 10 and instead take him to the Metairie clinic to see Dr. C at 2pm. I immediately called the general pediatrician's office to check on the referral and she checked the system and saw that he did indeed have a referral to see Dr. C and she faxed it over that same day. That's the referral that was lost somewhere. So I pitched a fit. How dare they even think of sending us home to wait ANOTHER 7 DAYS to get my son seen b/c of a mistake someone in their office made. I understand that the nurse and the office manager's hands were tied, but unfortunately, they had to be a sounding board. I actually had to just say "Let me walk out of here before I go to jail." b/c I seriously felt like punching something. I snatched my cell phone and called the pediatrician's office and demanded to speak to the nurse. The receptionist said she could take a message but I said "No. I've left 3 messages and now the neurologist is about to cancel my child's appointment. I need the nurse on the phone now." I was put on hold for about 3 minutes and then the receptionist comes back on the phone and says she has a referral for Dr M. I said, he also has another referral which is for Dr. C. She goes through it again and says she sees one for Dr. A. No, that's the Dr who we are no longer seeing. She looked again and said "OH!! HERE IT IS!" OMG. I headed back inside and asked that receptionist to grab the nurse and they hounded the fax machine and finally, at 3:45 (his appointment was scheduled for 2), the referral came through. Lord...
So, anyway, I walked in there feeling bad about the way I had to act in order to get him seen, but hey at least he was finally being seen. And the best thing about it all...Dr. C was totally worth the wait. Yeah, I know I could possibly be jumping the gun, but I had a bad taste in my mouth for the previous neurologist from the very first visit and less than a week later we were looking for a new neurologist. Dr. C apologized for the referral issue and went to work getting Jayden's history and the names of the medications that he has tried and the ones that didn't work for him at all. The Dr told us that there are still several medications available that we can try him on (which was a relief b/c the last Dr told us that his chances of having his seizures medically controlled were slim...ugh)and we still have several options before having to pursue surgical options. She wants him to have a 24 hour video EEG done soon. She's adjusting his medication and going to attempt to eliminate the ones that he's taking that are simply not helping at all. We discussed the benefits of a vagus nerve stimulator so that we will know that it's definitely an option for Jayden should the medications not work for him. She told us "We are not going to give up on him. We will stop the seizures or work on reducing the frequency b/c it CAN be done, we just have to figure out how."
Before we left, she gave me her PERSONAL email address b/c she simply does not rely 100% on her office staff b/c they are not 100% reliable (example #1, the referral.) She wants me to keep in touch with her via email while he's weaning on to the new medication and to keep her posted on any abnormal reactions. She told me that her emails go straight to her phone and she checks it often. That is so very reassuring to me, you have no idea. She recently completed her residency over at Tulane so she worked with Dr. Nelson (our 1st WONDERFUL neurologist who relocated) and his wonderful nurse Marc and she mentioned how much she misses Marc b/c he was an excellent nurse. To which I agreed! I still call Marc when our backs are up against the wall and even though Jayden isn't his patient anymore, he does what he can to help! I told her I believe Marc spoiled the both of us, lol! Before we left, I apologized to the nurse once again about getting so upset in the waiting room and both she and the Dr chimed in and said "Oh don't be sorry!! That's your son and you are going to fight for him no matter what. We understand." Thank you Lord. I needed to hear that SOMEONE understands b/c for 4 long months we dealt with a Dr that simply did not understand and didn't care to try and understand. I'm so glad we are starting the new year with a new Dr and a new outlook.
So, anyway, I walked in there feeling bad about the way I had to act in order to get him seen, but hey at least he was finally being seen. And the best thing about it all...Dr. C was totally worth the wait. Yeah, I know I could possibly be jumping the gun, but I had a bad taste in my mouth for the previous neurologist from the very first visit and less than a week later we were looking for a new neurologist. Dr. C apologized for the referral issue and went to work getting Jayden's history and the names of the medications that he has tried and the ones that didn't work for him at all. The Dr told us that there are still several medications available that we can try him on (which was a relief b/c the last Dr told us that his chances of having his seizures medically controlled were slim...ugh)and we still have several options before having to pursue surgical options. She wants him to have a 24 hour video EEG done soon. She's adjusting his medication and going to attempt to eliminate the ones that he's taking that are simply not helping at all. We discussed the benefits of a vagus nerve stimulator so that we will know that it's definitely an option for Jayden should the medications not work for him. She told us "We are not going to give up on him. We will stop the seizures or work on reducing the frequency b/c it CAN be done, we just have to figure out how."
Before we left, she gave me her PERSONAL email address b/c she simply does not rely 100% on her office staff b/c they are not 100% reliable (example #1, the referral.) She wants me to keep in touch with her via email while he's weaning on to the new medication and to keep her posted on any abnormal reactions. She told me that her emails go straight to her phone and she checks it often. That is so very reassuring to me, you have no idea. She recently completed her residency over at Tulane so she worked with Dr. Nelson (our 1st WONDERFUL neurologist who relocated) and his wonderful nurse Marc and she mentioned how much she misses Marc b/c he was an excellent nurse. To which I agreed! I still call Marc when our backs are up against the wall and even though Jayden isn't his patient anymore, he does what he can to help! I told her I believe Marc spoiled the both of us, lol! Before we left, I apologized to the nurse once again about getting so upset in the waiting room and both she and the Dr chimed in and said "Oh don't be sorry!! That's your son and you are going to fight for him no matter what. We understand." Thank you Lord. I needed to hear that SOMEONE understands b/c for 4 long months we dealt with a Dr that simply did not understand and didn't care to try and understand. I'm so glad we are starting the new year with a new Dr and a new outlook.
Monday, December 27, 2010
We're home
and doing well :) Jayden was discharged yesterday afternoon with a new medication added to his current two, in order to help decrease his seizure activity. The attending neurologist (who was awesome BTW) told us that he did need to have an additional medication added immediately and then it could be changed if needed once his new neurologist runs any tests she needs to have in order to get him on the correct medications and the best dosage. We also have to bring him back sometime this week for another EEG, more than likely a video EEG. He's been compfrtable at home for the most part, although he does have little moments where he looks like he thinks he's about to have a seizure so he just wants to lay down. I'm pretty sure he's still having some activity, but it is not as bad as last week. Last week was pretty awful. He would scream and cry for help for 6 or more hours. And during this time, he could not eat so he was very miserable and so were we.
When we got home yesterday, Jayden was pretty out of it b/c the new medication makes him very drowsy, but when he saw that Santa came, he ran over to his gifts which included lots of learning toys, some action figures, legos, a board game, a powerwheel, and a new Spiderman Helmet. We expected him to run straight to the powerwheel and not care about anything else but we were SO WRONG! He did run up to the powerwheel, but only to grab his spiderman helmet and beg for us to open it. He refused to open anything else until the helmet was free from the packaging and strapped on to his head. Then he continued with ripping his gifts open. Classic Jayden :)
When we got home yesterday, Jayden was pretty out of it b/c the new medication makes him very drowsy, but when he saw that Santa came, he ran over to his gifts which included lots of learning toys, some action figures, legos, a board game, a powerwheel, and a new Spiderman Helmet. We expected him to run straight to the powerwheel and not care about anything else but we were SO WRONG! He did run up to the powerwheel, but only to grab his spiderman helmet and beg for us to open it. He refused to open anything else until the helmet was free from the packaging and strapped on to his head. Then he continued with ripping his gifts open. Classic Jayden :)
Saturday, December 25, 2010
Merry Christmas
from the hospital :(
Jayden continued to have seizures throughout the day yesterday and was extremely miserable. We had to use his rescue medication on Thursday to stop seizures but they started again 2 hours later. Yesterday evening we decided to bring him in to the ER to see if they could stop the seizures. Well the seizures stopped on their own by the time we were called back, but Jayden was still very wobbly and uncoordinated so they decided to admit him and try to get him stable until his appointment on January 4. They started a new medication and he did well through the night and was doing great this morning. He even had the cutest surprise visit from Santa. The Dr examined him and was happy with his progress. She wanted to order an EEG but the soonest it can be done will be Monday. She decided that instead of keeping him here until Monday, she'd let us take him home so we can enjoy the rest of Christmas at home. We would have had to bring him back on Monday for the EEG and we were fine with that. Just as they were finishing up his discharge papers, he had a seizure. The Drs came in and tried to wake him (he immediately fell into a deep sleep), but he wasn't responding, not even to pain. So they paged the neurologist and she ordered more IV meds and monitoring. He will be re evaluated at in 3 hours. Right now he is resting. It's bittersweet. We were THIS close to heading home. However, I would have been very upset if he would have been discharged only to get home and start seizing again. He's where he needs to be right now and the hospital staff has made sure that his Christmas is just as enjoyable here as it would have been at home! So far Santa has brought him a Handy Manny cell phone, Mr. Potato Head, a musical train (with tracks!), and Candyland! What's funny is that these are ALL his favorites!! Funny how Santa got that all right huh? Thank you Lord. I know you are listening.
Jayden continued to have seizures throughout the day yesterday and was extremely miserable. We had to use his rescue medication on Thursday to stop seizures but they started again 2 hours later. Yesterday evening we decided to bring him in to the ER to see if they could stop the seizures. Well the seizures stopped on their own by the time we were called back, but Jayden was still very wobbly and uncoordinated so they decided to admit him and try to get him stable until his appointment on January 4. They started a new medication and he did well through the night and was doing great this morning. He even had the cutest surprise visit from Santa. The Dr examined him and was happy with his progress. She wanted to order an EEG but the soonest it can be done will be Monday. She decided that instead of keeping him here until Monday, she'd let us take him home so we can enjoy the rest of Christmas at home. We would have had to bring him back on Monday for the EEG and we were fine with that. Just as they were finishing up his discharge papers, he had a seizure. The Drs came in and tried to wake him (he immediately fell into a deep sleep), but he wasn't responding, not even to pain. So they paged the neurologist and she ordered more IV meds and monitoring. He will be re evaluated at in 3 hours. Right now he is resting. It's bittersweet. We were THIS close to heading home. However, I would have been very upset if he would have been discharged only to get home and start seizing again. He's where he needs to be right now and the hospital staff has made sure that his Christmas is just as enjoyable here as it would have been at home! So far Santa has brought him a Handy Manny cell phone, Mr. Potato Head, a musical train (with tracks!), and Candyland! What's funny is that these are ALL his favorites!! Funny how Santa got that all right huh? Thank you Lord. I know you are listening.
Wednesday, December 22, 2010
We'll be home for Christmas...
And probably miserable :(
Jayden tested positive for the flu this morning...We had to skip the flu shot for him this year b/c his seizures were not controlled. I have no idea why things are so bad for him right now. Why can't he catch a break. It just seems like a nightmare that I cannot wake up from. He's still having seizures everyday and b/c of that, the Dr decided that it was best for him not to take the Tamiflu b/c it does have seizures as a side effect. She warned us that his seizures will increase b/c his immune system is fighting off the flu. So that will mean multiple seizures a day. My poor baby. We have to keep a close eye on his temperature and just try to keep him comfortable, but otherwise it has to run it's course.
Jayden tested positive for the flu this morning...We had to skip the flu shot for him this year b/c his seizures were not controlled. I have no idea why things are so bad for him right now. Why can't he catch a break. It just seems like a nightmare that I cannot wake up from. He's still having seizures everyday and b/c of that, the Dr decided that it was best for him not to take the Tamiflu b/c it does have seizures as a side effect. She warned us that his seizures will increase b/c his immune system is fighting off the flu. So that will mean multiple seizures a day. My poor baby. We have to keep a close eye on his temperature and just try to keep him comfortable, but otherwise it has to run it's course.
Friday, September 17, 2010
Another update
Well. Not too long after I blogged this morning, Jayden's condition got worse. I mentioned that my husband had to pick Jayden up from school early b/c he had a seizure. He got home and was on the couch when he had another one. Then, 10 minutes later, another one. I figured, what's the use in calling the Dr b/c she shows no sense of urgency anyway but once my baby started screaming "Mommy help me!" I was going to force some urgency on them. I called and I told the receptionist, " I need Dr. A or her nurse to call me back asap b/c Jayden is having multiple seizures RIGHT NOW and is not recovering." Jayden was SCREAMING in pain as I left the message. I hung up, not expecting a call back anytime soon and went and got a cool wash cloth to place on Jayden as my husband held on to him. 5 minutes after I left the message, the nurse called me back {gasp}. She immediately said, "Dr. A is not in the office today but her partner, Dr. W, said that you need to bring Jayden in to the ER right away." Then she says, "Please keep us posted on his condition, I'm in the office today until 5 pm." Seriously thinking that I talked to a different nurse who just happened to have the same name and voice as the other nurse. Weird.
Well we hopped in the truck and drove to the ER (45 minute drive!). He had another seizure in his car seat on the way there. We didn't wait long at all in the waiting room and didn't wait long to be seen by the ER Dr either. Jayden's eyes were open somewhat and he was barely alert. He responded to pain and followed the Dr with his eyes when she moved around the room. However, he could not lift his head, his reactions were delayed, and we could not lie him flat or even on his sides without him going into hysterics. They drew blood and inserted an IV and then called the neurologist. The neurologist considered him as status epilepticus, which is pretty much intermittent seizure activity for 15-20 minutes or longer without regaining consciousness. So he was given a dose of Ativan through his IV. In less than 2 minutes, Jayden went from being listless, nonverbal, super drowsy, eyes rolling, to being able to hold up his head, smiling, TALKING, and even squealing. I could not believe my eyes. It was seriously the most amazing thing I've witnessed in a long time. That medication brought my baby back in the blink of an eye. When the Dr came back, even she was amazed! She said that based on his reaction, he was more than likely still seizing the entire time (even though we hadn't seen any tensing of his body in the ER at all)and the Ativan stopped it almost immediately. The entire mood in that room was changed. So Jayden was discharged with a Rx for the tablet form of Ativan to take in case of another situation like this one. The Dr also told us that his Diastat (the rectal rescue med that we carry with us) works just like the Ativan and will probably work just as fast since it's rectal, so I won't have to be afraid to use that if needed. Also, I was under the assumption that it should only be used for seizures lasting 5 minutes or longer. The ER doc told me that intermittent seizures (like the ones Jayden was having) lasting more than 5 minutes are just as dangerous if the person isn't regaining consciousness, so they should be treated as if it was an ongoing seizure. Patient education is very important! So now I know that we are prepared no matter the situation although I would LOVE for the seizures to just go away and leave my poor baby alone. Also, we left the ER with a Rx for the medication that his neurologist wanted to add (Lamictal) to his combination on the 27th. I guess God agreed with me, in that there's no reason to make my baby suffer until the 27th. He started it tonight and will begin weaning off of the Topomax on the 27th. I left the emergency room with more hope than I've had since the last time we were able to see Dr. N, Jayden's previous neurologist. I'm praying that this new combination of meds does the trick for him.
There was something really strange that my husband and I noticed at home today, during the fiasco. We have two mini schnauzers, a male (Kodi) and a female (Kaci). Kaci is 6 yrs old, and very calm around Jayden. She lets him pull at her ears (we stop him whenever we catch him, but once he dragged her across the floor by her ears!). She lets him ride Spiderman on her back. She lets him put sunglasses on her face and then she wears them until he takes them off :) Kodi, on the other hand, is 9 yrs old and not as patient. When he sees Jayden coming, he walks away. He either goes under the dining table and lies there or he goes to the laundry room. In fact, usually Kodi stays in the laundry room until Jayden is either taking a nap, upstairs playing,at schoo, or gone to bed for the night. LOL! He just doesn't have the patience. Well, when Mike got home with Jayden, Kodi came barging out of the laundry room and met them at the door, sniffing Mike's leg. They greet us at the door often, so we paid no attention to this. I hugged Jayden and asked if he was okay and then he put him on the couch and Kodi laid down in front of the couch. Everytime Jayden moaned or whined, Kodi sat straight up. When Jayden started to get really upset and Mike went to pick him up, Kodi got defensive and seemed to be guarding Jayden. He stayed at Mike's foot as if he was watching his every move and his eyes stayed fixed on Jayden. After I spoke with the nurse and we were packing up to go to the ER, Kodi started whining and pacing the floors. Mike turned the truck on and I took Jayden out to put him in his car seat and Kodi was at the door barking. Mike said he went to put Kodi in the laundry room (they go in there when we leave the house) and Kodi would not stay in there. He was scratching at the wall and whining. While Mike was inside, Jayden had another seizure in the truck. I think Kodi can sense the seizures! Crazy. We are thinking of switching up sleeping arrangements and letting Kodi sleep in the room with Jayden each night. We know he has seizures in his sleep, but we are never able to know when. My worse fear is that he would have one in the middle of the night and can't call out to us for help if he needs us. We've considered getting a seizure monitoring system, but as with any electronic device, we would have to expect false alarms and that makes me too nervous. The fact that Kodi is sensing the seizures is like a hidden blessing in the midst of all this sadness. I thank God for every rainbow he is sending our way and I look forward to many more.
Well we hopped in the truck and drove to the ER (45 minute drive!). He had another seizure in his car seat on the way there. We didn't wait long at all in the waiting room and didn't wait long to be seen by the ER Dr either. Jayden's eyes were open somewhat and he was barely alert. He responded to pain and followed the Dr with his eyes when she moved around the room. However, he could not lift his head, his reactions were delayed, and we could not lie him flat or even on his sides without him going into hysterics. They drew blood and inserted an IV and then called the neurologist. The neurologist considered him as status epilepticus, which is pretty much intermittent seizure activity for 15-20 minutes or longer without regaining consciousness. So he was given a dose of Ativan through his IV. In less than 2 minutes, Jayden went from being listless, nonverbal, super drowsy, eyes rolling, to being able to hold up his head, smiling, TALKING, and even squealing. I could not believe my eyes. It was seriously the most amazing thing I've witnessed in a long time. That medication brought my baby back in the blink of an eye. When the Dr came back, even she was amazed! She said that based on his reaction, he was more than likely still seizing the entire time (even though we hadn't seen any tensing of his body in the ER at all)and the Ativan stopped it almost immediately. The entire mood in that room was changed. So Jayden was discharged with a Rx for the tablet form of Ativan to take in case of another situation like this one. The Dr also told us that his Diastat (the rectal rescue med that we carry with us) works just like the Ativan and will probably work just as fast since it's rectal, so I won't have to be afraid to use that if needed. Also, I was under the assumption that it should only be used for seizures lasting 5 minutes or longer. The ER doc told me that intermittent seizures (like the ones Jayden was having) lasting more than 5 minutes are just as dangerous if the person isn't regaining consciousness, so they should be treated as if it was an ongoing seizure. Patient education is very important! So now I know that we are prepared no matter the situation although I would LOVE for the seizures to just go away and leave my poor baby alone. Also, we left the ER with a Rx for the medication that his neurologist wanted to add (Lamictal) to his combination on the 27th. I guess God agreed with me, in that there's no reason to make my baby suffer until the 27th. He started it tonight and will begin weaning off of the Topomax on the 27th. I left the emergency room with more hope than I've had since the last time we were able to see Dr. N, Jayden's previous neurologist. I'm praying that this new combination of meds does the trick for him.
There was something really strange that my husband and I noticed at home today, during the fiasco. We have two mini schnauzers, a male (Kodi) and a female (Kaci). Kaci is 6 yrs old, and very calm around Jayden. She lets him pull at her ears (we stop him whenever we catch him, but once he dragged her across the floor by her ears!). She lets him ride Spiderman on her back. She lets him put sunglasses on her face and then she wears them until he takes them off :) Kodi, on the other hand, is 9 yrs old and not as patient. When he sees Jayden coming, he walks away. He either goes under the dining table and lies there or he goes to the laundry room. In fact, usually Kodi stays in the laundry room until Jayden is either taking a nap, upstairs playing,at schoo, or gone to bed for the night. LOL! He just doesn't have the patience. Well, when Mike got home with Jayden, Kodi came barging out of the laundry room and met them at the door, sniffing Mike's leg. They greet us at the door often, so we paid no attention to this. I hugged Jayden and asked if he was okay and then he put him on the couch and Kodi laid down in front of the couch. Everytime Jayden moaned or whined, Kodi sat straight up. When Jayden started to get really upset and Mike went to pick him up, Kodi got defensive and seemed to be guarding Jayden. He stayed at Mike's foot as if he was watching his every move and his eyes stayed fixed on Jayden. After I spoke with the nurse and we were packing up to go to the ER, Kodi started whining and pacing the floors. Mike turned the truck on and I took Jayden out to put him in his car seat and Kodi was at the door barking. Mike said he went to put Kodi in the laundry room (they go in there when we leave the house) and Kodi would not stay in there. He was scratching at the wall and whining. While Mike was inside, Jayden had another seizure in the truck. I think Kodi can sense the seizures! Crazy. We are thinking of switching up sleeping arrangements and letting Kodi sleep in the room with Jayden each night. We know he has seizures in his sleep, but we are never able to know when. My worse fear is that he would have one in the middle of the night and can't call out to us for help if he needs us. We've considered getting a seizure monitoring system, but as with any electronic device, we would have to expect false alarms and that makes me too nervous. The fact that Kodi is sensing the seizures is like a hidden blessing in the midst of all this sadness. I thank God for every rainbow he is sending our way and I look forward to many more.
EEG results
Jayden's EEG results are still abnormal. The Dr reported that "nothing has changed", meaning that the abnormal brain waves are coming from all areas of his brain and not just one localized region. Unfortunately, this does make it hard to find the correct medication for him. Certain anti-convulsants work best for certain regions of the brain, but in Jayden's case, it's his entire brain so it's going to take time to find the right combination for him. That part, I understand. What I don't understand is why we have to wait until his follow up appointment, scheduled on the 27th, to change his medication. Our first appt with this Dr was on Aug 26th. At that appt, we told her that Jayden was having AT LEAST one seizure a week and that this had been going on since June. I've read (and the Dr actually told me this!!) that the longer seizures are left untreated, the harder it is to control them. So if she knows his seizures are not controlled at this point, and she knows that his EEG is still unchanged, and she knows which medication she wants to wean him off of and what she wants to replace it with, then WHY is she making him (and us!!) wait another week and a half to make the changes? Why not give us the instructions on how to wean him and how to start the new meds and then followup with us on the 27th to see how he's doing? Honestly, I feel AWFUL, as if I'm dictating how this DR should be treating my child and she's been at this for over 20 yrs. I am not even close to being as experienced as she is, and I am SURE that she knows what she's doing and why she's doing it. However, as a mother, I think an explanation of WHY would help me at this point. To them 12 days is just another week or so. To me and my husband, 12 days is another 2 or more seizures that we know we will have to witness and be strong for.
Jayden hasn't been a patient of this new Dr for a month yet, but I know that I am already the mom that they roll their eyes about when they get a message from me. I'm the mom that they gossip about and despise. I know this b/c I have had to call to leave messages at least twice a week for them ever since Jayden 1st saw the Dr and had the 6 minute long seizure that same night. Now when I call, the lady at the call center knows me by name and says "Do you need to leave another message for Dr. A?" Yesterday, I said "Yes, and I promise you I wouldn't be calling this often if they would just return my calls!" It's true, I have to leave at least 2 messages before they return my call and God forbid I miss the call when they finally return it. It's freaking ridiculous! I don't want to be that mom. I have stopped and ask myself, am I calling too much? Since his 1st appt on Aug 26, I called 3 times about his 6 minute long seizure before they finally returned my called. I called twice about getting his prescription renewed before the nurse finally returned my call. Then I called twice about his EEG results and to find out if we needed a followup appt before my call was finally returned. Then, I missed the call from the Dr about the results and I had to call twice before I actually got a call back. One message never does the trick for them, so it's not me, it's them and THEY are annoying me! I mean, what mom is not going to call to answers for WHY her child is having seizures so often. What mom doesn't want reassurance that it will be okay? What mom is going to just wait around, for a month, on a Dr to finally decide what needs to be done with her baby who is having seizures so frequently that he's missing at least one day of school a week?!?! I don't know of any. It makes me wonder if the Dr and her nurse even have kids...
It's frustrating, to say the least. But now I will count the days until the 27th and pray for a decrease in the seizures soon. Until then, I need to go and take care of my little guy who was just checked out of school early b/c he had a seizure during breakfast.
Jayden hasn't been a patient of this new Dr for a month yet, but I know that I am already the mom that they roll their eyes about when they get a message from me. I'm the mom that they gossip about and despise. I know this b/c I have had to call to leave messages at least twice a week for them ever since Jayden 1st saw the Dr and had the 6 minute long seizure that same night. Now when I call, the lady at the call center knows me by name and says "Do you need to leave another message for Dr. A?" Yesterday, I said "Yes, and I promise you I wouldn't be calling this often if they would just return my calls!" It's true, I have to leave at least 2 messages before they return my call and God forbid I miss the call when they finally return it. It's freaking ridiculous! I don't want to be that mom. I have stopped and ask myself, am I calling too much? Since his 1st appt on Aug 26, I called 3 times about his 6 minute long seizure before they finally returned my called. I called twice about getting his prescription renewed before the nurse finally returned my call. Then I called twice about his EEG results and to find out if we needed a followup appt before my call was finally returned. Then, I missed the call from the Dr about the results and I had to call twice before I actually got a call back. One message never does the trick for them, so it's not me, it's them and THEY are annoying me! I mean, what mom is not going to call to answers for WHY her child is having seizures so often. What mom doesn't want reassurance that it will be okay? What mom is going to just wait around, for a month, on a Dr to finally decide what needs to be done with her baby who is having seizures so frequently that he's missing at least one day of school a week?!?! I don't know of any. It makes me wonder if the Dr and her nurse even have kids...
It's frustrating, to say the least. But now I will count the days until the 27th and pray for a decrease in the seizures soon. Until then, I need to go and take care of my little guy who was just checked out of school early b/c he had a seizure during breakfast.
Friday, September 10, 2010
PROGRESS!!
Finally, a post with great news :)
Jayden has been regressing a lot lately due to the increase in his seizure activity. One of the main things we noticed the he lost was his ability to identify the alphabet. It may sound very trivial, but it is very disturbing to see your child go from spelling out words to not being able to identify a single letter. It's extremely hard for me b/c Jayden expressed a love for alphabets very early on. I have a vivid memory of carrying him out of Kohl's one evening, when he was just 2 yrs old when all of a sudden I hear him say "K...O...H...L!" Of course, I know he had no idea what he was spelling, but he saw letters and identified them! And this happened all.the.time. He would pick up the newspaper and start calling out the letters in bold print. Also, I have an Aeropostle shirt that Jayden loves. It has "AERO" on the front and he loved to spell it out. I also have an Air Force shirt with big "AIR FORCE" on it and Jayden would spell that out and then say "Daddy" :)So letters were a big deal to him and it was very painful to watch him lose that. Every letter became B. Even the ABC song was now "B B B B B...." :( We would show him flash cards and every letter to him was B. We tried two letters at a time...A and B, and we would tell him to say A when he sees the A card. He'd repeat after us, but when asked what the A was, he would say B. My Aero shirt meant nothing to him anymore. Letters meant nothing to him anymore. I was very discouraged and worried about him. His teacher told me it wasn't yet an age appropriate skill, but his neurologist did agree with me that the lose of that ability becomes a concern when neurological issues come in to play b/c the brain is being affected.
So in true fashion, I took it upon myself to help my baby :) I ordered him the Leapfrog Learning DVD set. It comes with 3 DVDs (Let's Go To School, Letter Factory, and Talking Words Factory) and alphabet flashcards. It took a while for the set to come in, but it actually came in on the day we left for Panama City, just last Thursday. Jayden instantly loved them. The entire 4 days we spent in the hotel, he requested the DVDs. Whenever he asked to watch a movie in the truck, we turned on the Letter Factory. Before we left Panama City, on Labor Day (only 4 days after watching the videos), Jayden pulled the flashcards out of the box. They were still packaged so of course the only card he could see was the letter A. Remember, before these videos, all letters were B to him. He walked up to me and handed me the cards and said "Mommy, A!!" SO PROUD!! And as if that wasn't enough, last night we were chatting with my mom while she was proofreading nursing notes for her job. Jayden picked one up and grabbed my mom's face and said "You hear me?" (we ask him "Can you hear me?" very often b/c of his staring spells! lol) and then started "reading" the notes to her. On the bottom there are a few sentences in bold, black ink and Jayden pointed to the letters and identified just about all of them!! And this was only 7 days after being introduced to these DVDs!!
I am NOT expecting or even hoping that these DVDs teach Jayden how to read (although these DVDs are highly recommended for teaching early reading skills and is MUCH cheaper than Your baby can Read!). I am simply trying to help him to regain his love for letters. It was something he enjoyed prior to the seizures stealing that from him. His little brain is still so vulnerable, still growing, so there is still hope that he can regain skills that he has lost (or will lose). This is one step in the right direction for him and it certainly puts a smile on my face!
Jayden has been regressing a lot lately due to the increase in his seizure activity. One of the main things we noticed the he lost was his ability to identify the alphabet. It may sound very trivial, but it is very disturbing to see your child go from spelling out words to not being able to identify a single letter. It's extremely hard for me b/c Jayden expressed a love for alphabets very early on. I have a vivid memory of carrying him out of Kohl's one evening, when he was just 2 yrs old when all of a sudden I hear him say "K...O...H...L!" Of course, I know he had no idea what he was spelling, but he saw letters and identified them! And this happened all.the.time. He would pick up the newspaper and start calling out the letters in bold print. Also, I have an Aeropostle shirt that Jayden loves. It has "AERO" on the front and he loved to spell it out. I also have an Air Force shirt with big "AIR FORCE" on it and Jayden would spell that out and then say "Daddy" :)So letters were a big deal to him and it was very painful to watch him lose that. Every letter became B. Even the ABC song was now "B B B B B...." :( We would show him flash cards and every letter to him was B. We tried two letters at a time...A and B, and we would tell him to say A when he sees the A card. He'd repeat after us, but when asked what the A was, he would say B. My Aero shirt meant nothing to him anymore. Letters meant nothing to him anymore. I was very discouraged and worried about him. His teacher told me it wasn't yet an age appropriate skill, but his neurologist did agree with me that the lose of that ability becomes a concern when neurological issues come in to play b/c the brain is being affected.
So in true fashion, I took it upon myself to help my baby :) I ordered him the Leapfrog Learning DVD set. It comes with 3 DVDs (Let's Go To School, Letter Factory, and Talking Words Factory) and alphabet flashcards. It took a while for the set to come in, but it actually came in on the day we left for Panama City, just last Thursday. Jayden instantly loved them. The entire 4 days we spent in the hotel, he requested the DVDs. Whenever he asked to watch a movie in the truck, we turned on the Letter Factory. Before we left Panama City, on Labor Day (only 4 days after watching the videos), Jayden pulled the flashcards out of the box. They were still packaged so of course the only card he could see was the letter A. Remember, before these videos, all letters were B to him. He walked up to me and handed me the cards and said "Mommy, A!!" SO PROUD!! And as if that wasn't enough, last night we were chatting with my mom while she was proofreading nursing notes for her job. Jayden picked one up and grabbed my mom's face and said "You hear me?" (we ask him "Can you hear me?" very often b/c of his staring spells! lol) and then started "reading" the notes to her. On the bottom there are a few sentences in bold, black ink and Jayden pointed to the letters and identified just about all of them!! And this was only 7 days after being introduced to these DVDs!!
I am NOT expecting or even hoping that these DVDs teach Jayden how to read (although these DVDs are highly recommended for teaching early reading skills and is MUCH cheaper than Your baby can Read!). I am simply trying to help him to regain his love for letters. It was something he enjoyed prior to the seizures stealing that from him. His little brain is still so vulnerable, still growing, so there is still hope that he can regain skills that he has lost (or will lose). This is one step in the right direction for him and it certainly puts a smile on my face!
Tuesday, September 7, 2010
EEG scheduled
I was able to get in touch with the Neurology department at Tulane Hospital today and the scheduler was able to get us on the schedule for Thursday morning. I confirmed the date, but she still needed to call the nurse over at Jayden's Drs office to have her to call for the authorization from Tricare and to have her to fax over the order. I do believe it would have been MUCH easier for the nurse to call Tulane herself, but oh well, it's done. I'm still not understanding why he needs a 4th EEG done, though. We KNOW he has epilepsy and we KNOW that his seizures are breaking through the current meidcations. At this point, I have no idea what information she is trying to find by doing a 4th EEG. He has to be sleep deprived for it so we will keep him up until midnight on Wednesday and send him to school on Thursday morning. Then we will pick him up early and head over to Tulane for the EEG scheduled for 11:30. The hard part will be keeping him awake for the ride to the hospital. His genetics appt is scheduled for next Tuesday. If we don't start to get some answers or, at the very least, some medication adjustments or changes, we will be switching doctors.
My mom is the head of her nursing dept and was very upset about the experience I had with the nurse last week. She said that it definitely sounds like the nurse is sending me information prior to seeking advice from the Dr, especially with the refusal to refill Jayden's medications. I do hope that no Dr will ever refuse to refill a patient's seizure medication without good enough reason to do so! So my mom decided to call the nurse and speak with her. She said it was a very pleasant conversation and my mom did mention the State Board of Nursing to her at some point. The nurse told my mom much more information than she told me (not about Jayden or his condition b/c of the HIPPA law) but about why she wanted me to call and schedule the EEG and who to call and that the Dr wants the EEG done asap. Then she told my mom to tell me that she apologizes if she made me feel uneasy or upset. I don't know what to even say to that. We will see if she treats us better at the next appt, which BTW, is not even scheduled. I will make sure to let the Dr know about the issues with the nurse b/c my mom thinks the Dr may not even be aware of the situation.
On a positive note, we took a 4 day trip to Panama City and Jayden didn't have a single seizure! We had a few "scares" where he would get over heated and we'd have to rush to get him cooled off, but he never had a seizure and we were are so grateful! He was even able to play and enjoy himself on the beach (we had to stay close to the water though). We are hoping for many more family vacations like that one :)
My mom is the head of her nursing dept and was very upset about the experience I had with the nurse last week. She said that it definitely sounds like the nurse is sending me information prior to seeking advice from the Dr, especially with the refusal to refill Jayden's medications. I do hope that no Dr will ever refuse to refill a patient's seizure medication without good enough reason to do so! So my mom decided to call the nurse and speak with her. She said it was a very pleasant conversation and my mom did mention the State Board of Nursing to her at some point. The nurse told my mom much more information than she told me (not about Jayden or his condition b/c of the HIPPA law) but about why she wanted me to call and schedule the EEG and who to call and that the Dr wants the EEG done asap. Then she told my mom to tell me that she apologizes if she made me feel uneasy or upset. I don't know what to even say to that. We will see if she treats us better at the next appt, which BTW, is not even scheduled. I will make sure to let the Dr know about the issues with the nurse b/c my mom thinks the Dr may not even be aware of the situation.
On a positive note, we took a 4 day trip to Panama City and Jayden didn't have a single seizure! We had a few "scares" where he would get over heated and we'd have to rush to get him cooled off, but he never had a seizure and we were are so grateful! He was even able to play and enjoy himself on the beach (we had to stay close to the water though). We are hoping for many more family vacations like that one :)
Thursday, September 2, 2010
I'm Done.
First of all, let me apologize for what is about to follow. I need to vent. I just need to get this out, so I have to come to my blog...
Yesterday morning, before I even typed out that blog, I called and left a message for the nurse. The way this clinic works is that there is one front desk for every specialty clinic in the building. They take the message and email it to the correct nurse. Even if you miss a call (like I did today) you call back to the front desk and they send another email simply stating that you returned their call. Totally frustrating. Well anyway, my message yesterday was that Jayden was almost out of Topamax refills so we needed a new prescription called in. I left the name of the pharmacy and the number. I also asked for an update on the EEG that the Dr was supposed to be calling to have done sooner than the 16th. Of course, no one ever called me back. I wasn't surprised, but I was hoping that the nurse was smart enough to call in my child's seizure medications before he ran out with a 3 day weekend ahead. I called CVS and they checked the system and said that he had a prescription for Topamax on hold that they could fill. Since it was on hold, I knew it wasn't called in by the new Dr. It was on hold from Jayden's previous Dr from a mistake that was made by the pharmacy a few months ago. However, I waited until I got to the pharmacy to be sure. I was right. The prescribing physician was his previous neurologist. So I had the medication, which is great, but I was (and still am) angry at the fact that they didn't even bother filling his medication. Thank God I was silly enough to wait until he was completely out, but we leave for Florida tonight and he did not have enough to last the weekend. So I called again this morning. Oh yeah, I know I am the aggravating parent of the clinic now. I don't give a shit at this point. The nurse called me a few hours later but I missed her call. I called back and had to do the message circle again. She called back an hour later with a huge attitude. She immediately started to defend herself for not calling me back.
She said "We cannot call in that prescription for Jayden b/c we didn't prescribe it."
Wait, what?!?!
I said, "I know, his previous neurologist prescribed it and we just happened to run out of refills and need a new prescription called in since he is about to run out and I know that we cannot wait until the EEG b/c he will be out of medication by then and his seizures are already out of control." She then says, "Well when you came in on the 27th YOU told us that he was taking 15mg of Topamax, but you are asking us to fill a prescription for 25mg." I told her, "No ma'am. What I told you was that I was not sure of the mg but I could call you when I got home to check the bottle." I didn't want to turn around and point the finger at her, when in actuality, she went into the computer and it was listed there as 15mg so she went with that. But here is my problem with this...When I left the message I was reading off of his prescription bottle. 25mg. That's what he's been taking. That's what I read off the bottle. So you mean to tell me that b/c what I am telling you is on his bottle of meds does not match what's in your computer, you will NOT call in his medication? Does she know what will happen to my child if we just all of a sudden stop giving him his medication? She the nurse of a neurologist, so you would think that she'd know how serious that would be. But judging from her attitude, I don't think she knew, or she just doesn't give a shit. I told her, "Ma'am, he takes 25mg capsules. I read it from the bottle. He needs more medication." She said okay it will be called in. Thanks! So then I ask if the Dr spoke to her about moving the EEG up. Here goes...more finger pointing and defensiveness.
"No. {insert patronizing laugh}The Dr told YOU to call Tulane and schedule the EEG."
SERIOUSLY?! What is my insurance company paying her for???
I said, "So I just call neurology and tell them that I need my son to have an EEG done?" Nurse, "Yes." I said "Okay, thanks!" and hung up the phone. She is full of it. I cannot call a hospital and request an EEG for my own child without orders from a Dr. Besides that, it's NOT my job!!! That's ok. I'm going to ATTEMPT to call Tulane tomorrow. I imagine I will get several confused receptionists and schedulers (if I even get that far) who will be wondering why I am calling to schedule my child's EEG. Then I will have to call the neuro's office back, leave a message, wait for them not to call back. Then we will go on through a 3 day weekend. Who knows how many seizures Jayden will have had by the time the nurse calls me back. And by then, what's the use of having the EEG moved up sooner. This is unacceptable.
What's crazy is that this Dr is highly recommended and supposedly the best in New Orleans. I truly expected much better care than this for my son. The communication there is awful, and honestly, the Dr needs to find herself a new nurse b/c this nurse is giving her a bad rep. My son has had 4 freaking seizures since he saw her on Thursday, 7 days ago. I have had ZERO support from them and then today the nurse tries to REFUSE to fill his medication. The Dr may very well be the best in New Orleans, but unfortunately I don't think she is good enough for him.
Yesterday morning, before I even typed out that blog, I called and left a message for the nurse. The way this clinic works is that there is one front desk for every specialty clinic in the building. They take the message and email it to the correct nurse. Even if you miss a call (like I did today) you call back to the front desk and they send another email simply stating that you returned their call. Totally frustrating. Well anyway, my message yesterday was that Jayden was almost out of Topamax refills so we needed a new prescription called in. I left the name of the pharmacy and the number. I also asked for an update on the EEG that the Dr was supposed to be calling to have done sooner than the 16th. Of course, no one ever called me back. I wasn't surprised, but I was hoping that the nurse was smart enough to call in my child's seizure medications before he ran out with a 3 day weekend ahead. I called CVS and they checked the system and said that he had a prescription for Topamax on hold that they could fill. Since it was on hold, I knew it wasn't called in by the new Dr. It was on hold from Jayden's previous Dr from a mistake that was made by the pharmacy a few months ago. However, I waited until I got to the pharmacy to be sure. I was right. The prescribing physician was his previous neurologist. So I had the medication, which is great, but I was (and still am) angry at the fact that they didn't even bother filling his medication. Thank God I was silly enough to wait until he was completely out, but we leave for Florida tonight and he did not have enough to last the weekend. So I called again this morning. Oh yeah, I know I am the aggravating parent of the clinic now. I don't give a shit at this point. The nurse called me a few hours later but I missed her call. I called back and had to do the message circle again. She called back an hour later with a huge attitude. She immediately started to defend herself for not calling me back.
She said "We cannot call in that prescription for Jayden b/c we didn't prescribe it."
Wait, what?!?!
I said, "I know, his previous neurologist prescribed it and we just happened to run out of refills and need a new prescription called in since he is about to run out and I know that we cannot wait until the EEG b/c he will be out of medication by then and his seizures are already out of control." She then says, "Well when you came in on the 27th YOU told us that he was taking 15mg of Topamax, but you are asking us to fill a prescription for 25mg." I told her, "No ma'am. What I told you was that I was not sure of the mg but I could call you when I got home to check the bottle." I didn't want to turn around and point the finger at her, when in actuality, she went into the computer and it was listed there as 15mg so she went with that. But here is my problem with this...When I left the message I was reading off of his prescription bottle. 25mg. That's what he's been taking. That's what I read off the bottle. So you mean to tell me that b/c what I am telling you is on his bottle of meds does not match what's in your computer, you will NOT call in his medication? Does she know what will happen to my child if we just all of a sudden stop giving him his medication? She the nurse of a neurologist, so you would think that she'd know how serious that would be. But judging from her attitude, I don't think she knew, or she just doesn't give a shit. I told her, "Ma'am, he takes 25mg capsules. I read it from the bottle. He needs more medication." She said okay it will be called in. Thanks! So then I ask if the Dr spoke to her about moving the EEG up. Here goes...more finger pointing and defensiveness.
"No. {insert patronizing laugh}The Dr told YOU to call Tulane and schedule the EEG."
SERIOUSLY?! What is my insurance company paying her for???
I said, "So I just call neurology and tell them that I need my son to have an EEG done?" Nurse, "Yes." I said "Okay, thanks!" and hung up the phone. She is full of it. I cannot call a hospital and request an EEG for my own child without orders from a Dr. Besides that, it's NOT my job!!! That's ok. I'm going to ATTEMPT to call Tulane tomorrow. I imagine I will get several confused receptionists and schedulers (if I even get that far) who will be wondering why I am calling to schedule my child's EEG. Then I will have to call the neuro's office back, leave a message, wait for them not to call back. Then we will go on through a 3 day weekend. Who knows how many seizures Jayden will have had by the time the nurse calls me back. And by then, what's the use of having the EEG moved up sooner. This is unacceptable.
What's crazy is that this Dr is highly recommended and supposedly the best in New Orleans. I truly expected much better care than this for my son. The communication there is awful, and honestly, the Dr needs to find herself a new nurse b/c this nurse is giving her a bad rep. My son has had 4 freaking seizures since he saw her on Thursday, 7 days ago. I have had ZERO support from them and then today the nurse tries to REFUSE to fill his medication. The Dr may very well be the best in New Orleans, but unfortunately I don't think she is good enough for him.
Wednesday, September 1, 2010
Not Happy
I hate that I am even in a position to have to type this out....
I am not happy with Jayden's new neurologist!
We waited for months and I was SO HOPEFUL! So far, she was not worth the wait. If you read my last post, you know I'm not saying this b/c of her inability to "magically" heal my son and give us answers. I completely understand that she is human and I trust that she has some sort of plan to figure out what's going on with him and how to help him. HOWEVER...
Jayden was off Thursday morning. We actually left out of the house late b/c he was just not himself. He dazed almost the entire 45 minute ride to the clinic. Then when we got there he was very sleepy and lying in my husband's lap (pretty sure he'd had an absence seizure in the car). Well he was fine after a nap and we went over to my parents' house for dinner. Jayden played with his cousin and they even went to sell some of his cookie dough for school to the neighbors. He was just fine. But then he sat on the couch and we were at the dining table and could see him clearly. All of a sudden I heard him whine and I looked over at him. He tried to get off the couch but ended up doing a faceplant into the couch cushions. He cried and reached and the first person to get him was my niece. She sat him up but told me that he didn't want to get off the couch. Thinking back, when he starts having a seizure, he is impossible to easily pick up. It's like his entire body fights you. So she probably thought he was pulling away from her. He cried more and reached for me and I knew he was about to have a seizure (or having it already) so I picked him up and brought him to the table with us. It only got worse from there. He moaned, pounded on his head with his fist, pounded on my shoulder. He was hot and clammy and drooling. And this went on for 6 minutes. 6 long ass minutes. Can you imagine watching your child OBVIOUSLY in pain and you cannot do a thing FOR 6 MINUTES!?! My mom was ready to give him his rescue meds, but honestly, I wasn't prepared. I was worried about how he would react. The Diastat is rectal valium. The nearest hospital is over 20 minutes away. His seizures never lasted this long. I just kept saying, "It's gonna stop. It's gonna stop. It HAS to stop!!" It did stop eventually. But it left us with a baby that was out cold and family full of worry. He was absolutely fine the next morning albeit pretty hyper and uncoordinated.
So, of course, as would any concerned mother would do after an event like this, I called the Dr to leave a message on the next morning (Friday). My message was that my little boy had a 6 minute long seizure and his coordination is still off and I'm concerned. No one bothered returning my call. Bad taste. We stayed home (or close to home) all weekend b/c I couldn't bare him having a long seizure like that out in public. My strength is breaking. Sunday he had another one. It was VERY short, but strong enough to make him scream out in pain and then pass out. I called again on Monday and this time I said that I left a message on Friday and I didn't get a call back but really need to speak with someone b/c I'm concerned about my son. 2 hours later, the nurse called back. I told her about the seizure and she asked me if he was breathing the entire time. He moaned alot and every now and then he did take a deep breath before he seized again. That's all I could tell her. His face was losing color but it had been that way all day (the color of his face is the first thing I notice on a bad day). So then she says she will tell the Dr and the Dr will give me a call back. Well that was at 10am. 4:30 came and I never heard from the Dr. I called back and left a message asking if the nurse spoke to the Dr about my son. Yeah, I annoyed the shit out of them, but I cannot be timid about this when my child is suffering and possibly having some brain damage done during all of these seizures! If anything, give me a call back for reassurance. Well at 4:55 my phone rang and it was the Dr. I gave her a run down of what was going on and she said that she will call another hospital to see if they can do his EEG sooner than the 16th (the 4th EEG when the first 3 were all abnormal anyway...)but that she couldn't do that until the next day b/c scheduling was closed. Scheduling would not have been closed had she called me back sooner. But I give her the benefit of doubt and say that she was more than likely very busy with patients. HOWEVER, what if my son was an emergency situation?! I'm just not comfortable with that. This conversation with her was on Monday. She did not call me yesterday with any info on his EEG. I called this morning to find out about it. I left a message and I don't expect a call back today. I don't like chasing behind her. It's one thing if Jayden was a 100% healthy child with no serious issues, but frequent seizures is very serious. She should be making a bigger effort to not only get him help but to reassure us that she is working on a plan. To reassure me that the seizures he's having is not hurting him even though they are NOT controlled. To reassure me that the medication I'm dumping into his system twice a day (that is NOT working) is not poisoning his little body. Instead, all I get from her after I track her down is "Let me see if I can move his EEG up sooner, but the main thing we need is the genetics appt b/c I have to know if this is even something worth treating." Um, gee thanks for that reassurance!
I am so sick over this. I feel like I am failing him. His last neurologist was wonderful, despite the fact that he did not specialize in epilepsy. When Jayden was referred to him, he only had the abnormal EEG. We hadn't witnessed multiple seizures until the first (that we saw) grand mal seizure on Thanksgiving Day. After that, the seizures kept coming and he got the diagnosis and Dr. N was honest with us and told us that he needed to refer us to a neuro who specializing in E. But one thing about Dr. N...he returned calls. He reassured us. When Jayden's seizure activity increased, he did something about it. And when Jayden was very sick in April with breakthrough seizures (40-50 seizures a day!!) Dr. N returned calls immediately telling us what to do. He even called down to the ER to let them know that Jayden needed to be admitted when he arrived there. I am so afraid of that happening again while he is under the care of this Dr. She is not easily reached and does not seem to think that we are even deserving of a returned phone call concerning our son's health. I'm not happy with her. Sometime I wonder if I'm expecting too much b/c this is my son. But NO!! What is a phone call? What is a few minutes out of your busy day to let a very concerned parent know that you are actually working on a plan for her sick child? I don't even need the Dr to call me. Pass the message to your nurse for crying out loud. Here we are, going into a 3 day weekend. We have had a trip planned to visit my inlaws in Fl for some time now. We will have to go prepared for Jayden to have a seizure. I can handle the seizures. It's tough (especially the long ones!) but he's so scared when he's having one so I have to reassure him that it's gonna be alright. I only ask the same of his Dr. It's time for me to start the search for a new one...
I am not happy with Jayden's new neurologist!
We waited for months and I was SO HOPEFUL! So far, she was not worth the wait. If you read my last post, you know I'm not saying this b/c of her inability to "magically" heal my son and give us answers. I completely understand that she is human and I trust that she has some sort of plan to figure out what's going on with him and how to help him. HOWEVER...
Jayden was off Thursday morning. We actually left out of the house late b/c he was just not himself. He dazed almost the entire 45 minute ride to the clinic. Then when we got there he was very sleepy and lying in my husband's lap (pretty sure he'd had an absence seizure in the car). Well he was fine after a nap and we went over to my parents' house for dinner. Jayden played with his cousin and they even went to sell some of his cookie dough for school to the neighbors. He was just fine. But then he sat on the couch and we were at the dining table and could see him clearly. All of a sudden I heard him whine and I looked over at him. He tried to get off the couch but ended up doing a faceplant into the couch cushions. He cried and reached and the first person to get him was my niece. She sat him up but told me that he didn't want to get off the couch. Thinking back, when he starts having a seizure, he is impossible to easily pick up. It's like his entire body fights you. So she probably thought he was pulling away from her. He cried more and reached for me and I knew he was about to have a seizure (or having it already) so I picked him up and brought him to the table with us. It only got worse from there. He moaned, pounded on his head with his fist, pounded on my shoulder. He was hot and clammy and drooling. And this went on for 6 minutes. 6 long ass minutes. Can you imagine watching your child OBVIOUSLY in pain and you cannot do a thing FOR 6 MINUTES!?! My mom was ready to give him his rescue meds, but honestly, I wasn't prepared. I was worried about how he would react. The Diastat is rectal valium. The nearest hospital is over 20 minutes away. His seizures never lasted this long. I just kept saying, "It's gonna stop. It's gonna stop. It HAS to stop!!" It did stop eventually. But it left us with a baby that was out cold and family full of worry. He was absolutely fine the next morning albeit pretty hyper and uncoordinated.
So, of course, as would any concerned mother would do after an event like this, I called the Dr to leave a message on the next morning (Friday). My message was that my little boy had a 6 minute long seizure and his coordination is still off and I'm concerned. No one bothered returning my call. Bad taste. We stayed home (or close to home) all weekend b/c I couldn't bare him having a long seizure like that out in public. My strength is breaking. Sunday he had another one. It was VERY short, but strong enough to make him scream out in pain and then pass out. I called again on Monday and this time I said that I left a message on Friday and I didn't get a call back but really need to speak with someone b/c I'm concerned about my son. 2 hours later, the nurse called back. I told her about the seizure and she asked me if he was breathing the entire time. He moaned alot and every now and then he did take a deep breath before he seized again. That's all I could tell her. His face was losing color but it had been that way all day (the color of his face is the first thing I notice on a bad day). So then she says she will tell the Dr and the Dr will give me a call back. Well that was at 10am. 4:30 came and I never heard from the Dr. I called back and left a message asking if the nurse spoke to the Dr about my son. Yeah, I annoyed the shit out of them, but I cannot be timid about this when my child is suffering and possibly having some brain damage done during all of these seizures! If anything, give me a call back for reassurance. Well at 4:55 my phone rang and it was the Dr. I gave her a run down of what was going on and she said that she will call another hospital to see if they can do his EEG sooner than the 16th (the 4th EEG when the first 3 were all abnormal anyway...)but that she couldn't do that until the next day b/c scheduling was closed. Scheduling would not have been closed had she called me back sooner. But I give her the benefit of doubt and say that she was more than likely very busy with patients. HOWEVER, what if my son was an emergency situation?! I'm just not comfortable with that. This conversation with her was on Monday. She did not call me yesterday with any info on his EEG. I called this morning to find out about it. I left a message and I don't expect a call back today. I don't like chasing behind her. It's one thing if Jayden was a 100% healthy child with no serious issues, but frequent seizures is very serious. She should be making a bigger effort to not only get him help but to reassure us that she is working on a plan. To reassure me that the seizures he's having is not hurting him even though they are NOT controlled. To reassure me that the medication I'm dumping into his system twice a day (that is NOT working) is not poisoning his little body. Instead, all I get from her after I track her down is "Let me see if I can move his EEG up sooner, but the main thing we need is the genetics appt b/c I have to know if this is even something worth treating." Um, gee thanks for that reassurance!
I am so sick over this. I feel like I am failing him. His last neurologist was wonderful, despite the fact that he did not specialize in epilepsy. When Jayden was referred to him, he only had the abnormal EEG. We hadn't witnessed multiple seizures until the first (that we saw) grand mal seizure on Thanksgiving Day. After that, the seizures kept coming and he got the diagnosis and Dr. N was honest with us and told us that he needed to refer us to a neuro who specializing in E. But one thing about Dr. N...he returned calls. He reassured us. When Jayden's seizure activity increased, he did something about it. And when Jayden was very sick in April with breakthrough seizures (40-50 seizures a day!!) Dr. N returned calls immediately telling us what to do. He even called down to the ER to let them know that Jayden needed to be admitted when he arrived there. I am so afraid of that happening again while he is under the care of this Dr. She is not easily reached and does not seem to think that we are even deserving of a returned phone call concerning our son's health. I'm not happy with her. Sometime I wonder if I'm expecting too much b/c this is my son. But NO!! What is a phone call? What is a few minutes out of your busy day to let a very concerned parent know that you are actually working on a plan for her sick child? I don't even need the Dr to call me. Pass the message to your nurse for crying out loud. Here we are, going into a 3 day weekend. We have had a trip planned to visit my inlaws in Fl for some time now. We will have to go prepared for Jayden to have a seizure. I can handle the seizures. It's tough (especially the long ones!) but he's so scared when he's having one so I have to reassure him that it's gonna be alright. I only ask the same of his Dr. It's time for me to start the search for a new one...
Thursday, August 26, 2010
Broken
Well, today was the day that we've patiently waited on for nearly 2 months now..To meet with the pediatric neurologist who specializes in childhood epilepsy. I prayed that we'd walk in there with our list of questions and leave there with all of them answered. I believe that we often expect way too much out of Drs. Almost as if they have an answer for everything when they simply do not (b/c they are HUMAN!) and we expect them to have a magic wand that they can wave and say some magic words..."Seizures be gone!!" and voila, he's healed. It's not like that at all :(
I can't say that the appointment started off in a positive fashion. We live 45 minutes away from the clinic and we tried really hard to get out of the door on time. That's pretty hard to do when you have a little one who has to take 5 different medications each morning and that same little one is having a rough morning. So we left out of the door 10 minutes late. Our appointment was scheduled for 10:30 and we got there at 10:42(per my watch). We get checked in and they call Jayden back. The first thing the nurse says is "We won't be able to triage him as we usually do b/c you are running late." I ignored her b/c really, it takes all of 2 minutes to triage and I'm sure the Dr would have us waiting longer than that. So as she waled us to the room she asked something about our address and she noticed we live in Slidell so I said "That's why we are a bit late. We had a ways to travel to get here." Then she says, "Yeah well, you can't be more than 15 minutes late or we would have to reschedule the appt." So I smiled and said "Oh okay, we were just about 15 minutes late and I apologize for that." She said "16...you were 16 minutes lates." ARE YOU KIDDING ME? I simply said, "Wow." I wanted to slap her. I told my husband that if the Dr is as nasty as her nurse then we will have a problem. Thankfully, that wasn't the case. In fact, the Dr shooed her crazy nurse away when she questioned me about Jayden's med dosage when what I was telling her wasn't matching what was in the system. The Dr said, "Mom knows how much he's supposed to get and it probably just wasn't changed in the system. It happens." So anyway...about that appt.
The first thing the Dr says is "Ok, if it's not broken, I won't fix it, but if it is broken, I WILL fix it!" Big sigh of relief :) So the first thing we tell her is that he's been having seizures at least once a week. She says okay that's not good. That needs to be fixed. So she asked about the nature of his seizures and his postictal state. I also gave her a list of our concerns (I'm THAT mom) but she was very thankful for it and even asked if she could keep it for her records. She highlighted things that were red flags to her. She seemed mainly concerned with his lack of coordination and constant falling. She asked if we noticed any seizure activity when he would fall, but we didn't. We just thought he was clumsy or thrown off by his meds. She told us that since his seizures start and end so quickly, the falls may be seizures. She was also VERY concerned about the regression. Jayden's pre K teacher told us that it really wasn't a concern b/c the skills that he was losing (ABCs, counting, colors, etc) are not necessarily age appropriate skills. The Dr agreed with that, but she said it becomes a concern when there is a know neurological issue. This means that his brain is being directly affected. We were very surprised that she wasn't as concerned about the heat sensitivity. She told us that heat makes epilepsy worse. So he's avoiding the heat b/c the heat makes him "feel funny", which is the aura he gets prior to seizing. Makes good enough sense. So the seizures need to be better controlled and then the heat sensitivity should get better.
The Dr wants us to get him back in to see the genetics Dr so that he can dig further into the chromosome abnormality and find out how it's directly affecting (or causing) the epilepsy. She also scheduled another EEG. This will be his 4th (or 5th) I've lost count. He has to be sleep deprived which means I will be sleep deprived. And I have class on the day that it was scheduled. Oh joy!! She pretty sure that he will need his medications changed but she wants to find out exactly what part of his brain the seizures are coming from so that she can get him on the correct meds and dosage. She left us with a warning that since his seizures went untreated for so long (she said his initial regression at 18 months could have been due to seizures and we didn't catch them until over a year later), they will be harder to control, even with medication. So in a nutshell, it's broken and needs to be fixed. And fixing it is not going to be as easy as waving that magic wand and saying those magic words. If only we lived in a perfect world.
I can't say that the appointment started off in a positive fashion. We live 45 minutes away from the clinic and we tried really hard to get out of the door on time. That's pretty hard to do when you have a little one who has to take 5 different medications each morning and that same little one is having a rough morning. So we left out of the door 10 minutes late. Our appointment was scheduled for 10:30 and we got there at 10:42(per my watch). We get checked in and they call Jayden back. The first thing the nurse says is "We won't be able to triage him as we usually do b/c you are running late." I ignored her b/c really, it takes all of 2 minutes to triage and I'm sure the Dr would have us waiting longer than that. So as she waled us to the room she asked something about our address and she noticed we live in Slidell so I said "That's why we are a bit late. We had a ways to travel to get here." Then she says, "Yeah well, you can't be more than 15 minutes late or we would have to reschedule the appt." So I smiled and said "Oh okay, we were just about 15 minutes late and I apologize for that." She said "16...you were 16 minutes lates." ARE YOU KIDDING ME? I simply said, "Wow." I wanted to slap her. I told my husband that if the Dr is as nasty as her nurse then we will have a problem. Thankfully, that wasn't the case. In fact, the Dr shooed her crazy nurse away when she questioned me about Jayden's med dosage when what I was telling her wasn't matching what was in the system. The Dr said, "Mom knows how much he's supposed to get and it probably just wasn't changed in the system. It happens." So anyway...about that appt.
The first thing the Dr says is "Ok, if it's not broken, I won't fix it, but if it is broken, I WILL fix it!" Big sigh of relief :) So the first thing we tell her is that he's been having seizures at least once a week. She says okay that's not good. That needs to be fixed. So she asked about the nature of his seizures and his postictal state. I also gave her a list of our concerns (I'm THAT mom) but she was very thankful for it and even asked if she could keep it for her records. She highlighted things that were red flags to her. She seemed mainly concerned with his lack of coordination and constant falling. She asked if we noticed any seizure activity when he would fall, but we didn't. We just thought he was clumsy or thrown off by his meds. She told us that since his seizures start and end so quickly, the falls may be seizures. She was also VERY concerned about the regression. Jayden's pre K teacher told us that it really wasn't a concern b/c the skills that he was losing (ABCs, counting, colors, etc) are not necessarily age appropriate skills. The Dr agreed with that, but she said it becomes a concern when there is a know neurological issue. This means that his brain is being directly affected. We were very surprised that she wasn't as concerned about the heat sensitivity. She told us that heat makes epilepsy worse. So he's avoiding the heat b/c the heat makes him "feel funny", which is the aura he gets prior to seizing. Makes good enough sense. So the seizures need to be better controlled and then the heat sensitivity should get better.
The Dr wants us to get him back in to see the genetics Dr so that he can dig further into the chromosome abnormality and find out how it's directly affecting (or causing) the epilepsy. She also scheduled another EEG. This will be his 4th (or 5th) I've lost count. He has to be sleep deprived which means I will be sleep deprived. And I have class on the day that it was scheduled. Oh joy!! She pretty sure that he will need his medications changed but she wants to find out exactly what part of his brain the seizures are coming from so that she can get him on the correct meds and dosage. She left us with a warning that since his seizures went untreated for so long (she said his initial regression at 18 months could have been due to seizures and we didn't catch them until over a year later), they will be harder to control, even with medication. So in a nutshell, it's broken and needs to be fixed. And fixing it is not going to be as easy as waving that magic wand and saying those magic words. If only we lived in a perfect world.
Wednesday, August 11, 2010
Back to School
Today was Jayden's 1st day back in preschool after his summer break. He was excited to go back. He has grown so much over summer break, physically and mentally. He's talking in complete sentences, making requests, and he's completely potty trained. When school let out in May, he had the pee pee part down but due to the damage in his intestines caused by the celiac disease, he was still working on gaining control of his bowel muscles. When I told his teacher that he was in underwear and 100% potty trained she said "He's WHAT?!?!" I said "He's potty trained!" and she gave me a hug! LOL! One less pullup/diaper she has to change, so I can understand the relief!
Here's a cute video of Jayden headed to his class on the first day :)
Here's a cute video of Jayden headed to his class on the first day :)
Sunday, August 8, 2010
Annual Family Vacation 2010, RECAP
We've been going to Orlando each summer in August since 2004...Mom, Dad, my niece, and Mike and I. Once Jayden was born, he joined in on the fun. And this year was the best yet! But, of course, as with any vacation there is always The Good, The Bad, and The Ugly!
Let's start with the Good...
WE HAD FUN FUN FUN!! The drive to Orlando and back was AWESOME! Jayden was so well behaved that we hardly knew there was a 3 yr old in the truck. This was completely opposite of last year. Last year was AWFUL, but of course we had no idea what was truly going on with Jayden and were still fighting medical Drs to find out. This time around he watched his movies, got out at rest areas to use the restroom, and was just all around a great traveler. Once we got to the resort, Jayden had to have said "Wow" about 50 times. He was truly amazed and he showed that. We went to Universal Studios, Islands of Adventures, Magic Kingdom, Epcot, and Hollywood Studios. We also did a day at Blizzard Beach Water Park. Jayden met and took Pictures with Spiderman (and the other Marvel comics superheroes),Mickey and the Gang, and several other characters that he knows and loves. He is exactly 40 inches tall so he was able to ride on a few rides. His reactions were PRICELESS! On the Spiderman ride, I wish I could have had him on video. He was helping Spiderman to fight crime and had his jaw on the floor the entire time b/c he really thought he was in the scene. And we took him on a Jaws ride. We didn't think he knew anything about Jaws, but when we got to the attraction he pointed to the shark and said, "Jaws!!" Then we remembered that he watched Jaws at on of the gym's dive in movies. He has a superb memory. He was so into all of the action and he does this thing where when he gets shocked he shakes his head as if he's doing a double (or triple take) and holds his mouth open in shock. He had so many people laughing. The parks were very accommodating to Jayden's needs as well. We were given a red sticker to put on his stroller to allow us to use it as a wheelchair so we only took him out when we really needed to. For the most part, he was able to stay in the stroller and the park staff was very kind about it. This helped him alot b/c at one point (going to meet Mickey at Magic Kingdom) I didn't use the option b/c I thought he could handle the line since it was inside in the AC and within 10 minutes of waiting, he started hyperventilating. He still has the fear of large crowds and I'm sure the noise of all the people talking was overstimulating to him. After that, I decided to just use the pass to it's full advantage. Jayden was also accommodated at the food areas as well. One day he enjoyed a hot dog on a tapioca bun. Pure joy! This was truly his magical year!
Now how about the Bad...
Of course, the seizures :( We definitely didn't expect to get through this trip without a single seizure. We actually went prepared for them. We had BOTH of his Diastat meds in case of a seizure lasting 5 minutes or longer. We had an ice pad for his stroller, two fans, and a stroller parasol. So many people commented on his get up, lol! We had ice packs in case he overheated, his noise reduction headsets in case he got overstimulated by the noise, his blanket for security, and lots and lots of water. We were also prepared to leave the parks at anytime for him b/c we knew that he'd been having issues with the heat/sun lately. However, his seizures all happened outside of the parks, in air conditioned areas. The 1st one was bright an early Sunday morning, before we even left the resort. Mike and I were packing his bag, my mom and dad were in their room, and Jayden was on the couch with my 13 yr old niece. He went from being a speed demon to sitting on the couch whining just like that. I never seem to panic when he does this, I have no idea why. I went and held him for a while and he was just acting sleepy so I figured he was just tired from the long day we had Saturday. I sat him on the couch and went to finish packing his bag. They were watching the Disney channel and I heard Jayden say "I'm scared". He says this before a seizure, but it still didn't register to me b/c I wasn't looking at him. I heard my niece say "You're not scared, this is a cartoon!". He kept whining saying he was scared and then he got quiet (I thought my niece picked him up) and then all of a sudden was a full on cry, as if he'd fell and hurt something. I went to get him and immediately knew he had a seizure. I didn't want to scare my niece so I just picked him up and carried him to our room where he immediately passed out. My mom came out after a few minutes and when she saw him she asked what happened but she already knew. I told her he had a seizure and my niece came running in very concerned. She said "He just started screaming, I didn't know it was a seizure." It's so hard on younger kids to understand that seizures are not going to always be extreme like the ones they see on movies. I told her what to look for in case he was with her again and we were not in the room. A major sign would be him whining and saying he's scared. I assured her that it wasn't her fault and he would be okay. He woke up after a good 45 minute deep sleep and then we headed to the park to see Spiderman and the rest of his day went extremely well! Mike and I were sure that this would be the only seizure b/c he has been having one a week for some time now. So we were both glad to "get that out of the way", but we were wrong. Mon-Wed went GREAT and Jayden was having so much fun! Thursday was Mike's birthday and we had reservations at Chef Mickey's for breakfast. Jayden woke up feeling warm. I left his thermometer at home, but my mom and I both agreed that he felt warm enough to need some Motrin, so I gave him some before we left for breakfast. He was very quiet and drowsy on the ride to Chef Mickey's. My dad and I kept saying "I don't think today is gonna be a good one for him." We got to Chef Mickey's and he seemed to perk up a bit, but you could tell he still wasn't feeling well. He only wanted to sit on my lap. When his food came out, he did eat some, which I thought was a good sign. His eyes had a very far away look to them though and he kept staring off into space. When Mickey and Minnie came to the table he hopped out of his seat to give them hugs, but his coordination was WAY off. He still wanted to see them though. He'd give hugs, pose for a picture, and then walk back to his seat and finish eating. And can I just say that we found out that Jayden has a huge crush on Minnie?? He gives her the sweetest look and the smile that shows both of his dimples. That was no different on this morning and he even followed her to give her one last hug before he came back to the table. I went to get him some more sausage links and when I got back to the table my mom was holding him. He was moaning in her arms, just very uncomfortable. Then his moaning got loader and suddenly stopped. His eyes rolled back and he tensed his limbs. It was as quick as 3 seconds but it exhausted him :( He was in and out of it for the rest of breakfast. He was still whining and pointing at Goofy and Pluto b/c he wanted his picture with them. I held him in those pictures and then when I sat back down, he crashed. The chef (who fixed Jayden's GF meal) came out to check on him and asked if we needed someone from first aid, but we figured he'd be ok. We sat at the table a while longer so that he could rest in the AC before we went out in the heat to either go back to the resort or head to Hollywood Studios. It's hard to tell with Jayden b/c he can pass out after a seizure and wake up like nothing ever happened and trust me you'd hate to be the one trapped in a resort with him once he gets up b/c it's like his little body has completely recharged and he cannot stop! He slept for about an hour in the restaurant and in the hotel lobby. When he woke up he was talking and pointing, even responding to questions. This usually means he's okay, so we caught the transport bus to Hollywood Studios. When we got to the gates he said "YAY!! Disney!!" We got a map and we 1st went on the movie ride (it's like a moving theater that rides you through different movie scenes). Jayden LOVES the movies! He got in his seat, which was right behind the driver and he pointed to himself and said "Hi, I Jayden Johnson!". He was SO ALERT on this ride and his face of shock had returned. At one point our driver got off and played in a scene and another person hopped on and "stole" our moving theater. Jayden looked at her with his eyebrows down and said "HEY!!" He was completely there so we had no reason to think that he was not okay. When the ride was over he stood up and clapped :) After that, we headed to the Muppet 3D show. We were trying to take advantage of everything that was indoors in AC until later, just in case. Well, in the Muppet 3D show, just in case actually happened. We used the handicap entrance (and can I say how guilty I felt pushing my child in a stroller through the handicap line with kids who were in wheelchairs??) and sat in the accessible rows which were right near the exit. He sat on my lap and then once the show started he got clammy and started crying. He kept saing "Ouch". I asked what hurt and he was very uncomfortable. His whining turned into crying. Sometime he throws up after a seizure so I thought maybe he was about to through up after his seizure he had that morning. I kept saying where's your bobo and he pointed to his head :( Then he had another seizure. Mike picked him up and sat on a bench against the wall to calm him down. Then we put him in his stroller and went straight to first aid. They gave us more ice packs and let us sit in there with him for as long as we needed. We decided that going back to the resort at that point wouldn't be the best option b/c it would mean bringing him in the heat to wait for the Disney transport, taking him out of the stroller to get on the bus, walking in the heat to the truck, etc. It was just too much stimulation when what he really needed to do was rest. So we sat there with him. First me, then my dad, while we took turns taking my niece around the park. She wouldn't smile though. She didn't want to go around the park, she wanted to be with Jayden. In the 1st aid center, another mom commented on how he was living the good life. Little did she know that he was actually suffering. We weren't in there just so he could get a nap in. He slept in the first aid center for about 30 minutes then woke up and watched the cartoons. When we got there to check on him my dad said that he was up for a long time but wasn't talking. That concerned us b/c it had been nearly 2 hours since the seizure. So I started asking him questions. He never answered any. Then I asked him if he wanted ice cream and all of a sudden he says "Let's go!" LOL! We took him to get his picture taken with Buzz and Woody and by the time he was done with that, Jayden was back and ENERGIZED. He was not listening, he was touching everything, he was singing, and he was begging for everything he saw! we went inside to the playhouse disney show and he was dancing all over and screaming "OH TOODLES!!" Yep he was refreshed!
Oh and there was lots of Ugly on our trip as well...
First lets talk about the Harry Potter ride!! The ride that many people waited in line for nearly 8 hours at a time when it first opened. We had a fast pass so we didn't wait nearly as long (maybe 10 minutes tops) but little did we'd be on the actual ride for well over an hour. We were riding and all of a sudden the sound stops and the rides comes to a stop. An announcer comes over the loud speaker and says something about technical difficulties. I thought it was a part of the ride as we were hanging there leaning forward with all of our weight on the chest bars. Then about 3 minutes later we are still sitting there and the lady says something else about technical difficulties and that they will be turning on the lights for us and moving our seats to a more comfortable position. 10 more minutes pass and then she comes on and says "I apologize but we are not able to move your seats at this time. We will be sending an emergency crew to evacuate the cars one by one. This evacuation process could take close to an hour to complete. Thank you for your continued patience." WOOOOOOW!!! So we just hung there. At first we tried to make light of the situation and we told jokes and got really acquainted with the guy who was in the car with us. But after hanging like that for over 30 minutes and no rescue in sight, panic started to sink in. My mom was getting a headache and I was getting claustrophobic. I used my mind to ward off two panic attacks that almost set in. I actually had to close my eyes and think of my somewhere totally different. It was AWFUL! But to make matters worse, when we were finally rescued after hanging there for over an hour, the ride staff was VERY NASTY to us. One person yelled at a rider for taking pictures with his phone. Then a lady yelled at me when I stopped to wait for my mom who was looking very sick and could barely walk straight, "THE EXIT IS RIGHT THERE KEEP IT MOVING!" No apologies or anything. We went to guest services and complained and they issued us an extra day in the park. We couldn't use the extra day but at least they did something about the matter. When we got back to the resort we found out that the Harry Potter ride has these technical issues very often. Just go on youtube and search for "Stuck on Harry potter ride". You'll find several videos. I guess the person who yelled at the guy for taking pictures didn't have the opportunity to catch all of the videos being made, LOL! Surprisingly, we also ran into some ugliness at a Disney Park. We were at Epcot and all of a sudden there was a huge downpour of rain. A huge crowd of people were running to the building to get out of the rain. Of course you have to expect to get bumped into. I was running and pushing Jayden's stroller when I mistakenly ran up on a woman's leg. She stopped and turned around and looked at me with the death stare. I said "I'm so sorry I'm just trying to get my son out of this rain." She continued to stare and wouldn't let me move and then I ended up being pushed by the crowd behind me and the stroller hit a man. He proceeded to turn around and yell at me in Spanish. It was a huge, ridiculous mess. I simply said "What do you expect to happen when a large crowd of people are running to the same place at the same time??" Goodness!! And finally, on our last day at the parks, Jayden's stroller tire went flat. It would not hold air in it so we had to use one of the rental strollers from the park. Poor Jayden was SO uncomfortable. Who wouldn't be?! Those stroller are awful! I was so upset, but thankful that this happened on our last day.
Looking back, I've learned so much on this trip. First of all, I don't think I had fully accepted just how bad Jayden's epilepsy is. I thought I did, but truly I hadn't until I looked back at the pictures on my camera. On the days where he was not having seizures, he has so much life in his eyes. On that day at Chef Mickey's, even before the first seizure, there was nothing. He just had a blank expression in every picture. Even if he smiled there was nothing behind the smile. That broke my heart. The seizures truly affect him in ways I never seemed to notice. I don't know why I never noticed it. Maybe b/c I want to wish it all away. But it is there and I need to accept it. Sure, it could be worse. He could be wheelchair bound like so many of the kids I saw at the parks. But the truth is, I should not feel any guilt for pushing him through the handicap entrance b/c he truly needs the accommodation. I always tell people that the seizures don't scare me much, I just feel really sorry for him when it happens b/c he's scared. Perhaps I was in shock or denial about ti all, b/c after this week, I am nervous and scared about them. I don't want him to have them anymore b/c I don't want to see him with that blank expression ever again. I don't want to imagine just how scared he must be or how much it must hurt him. I want them to stop. I've also realized just how much he NEEDS a stroller. He's 3.5 and 40 inches tall. You'd think that by now we could just toss the stroller, but I saw how his coordination is thrown way off well before he even has a seizure. There are days when I'm dragging him out to a store with me and he falls in the parking lots, or cries and says his head is hurting, and then later he has a seizure. He knows when they are coming, I don't. I think keeping him in a stroller would help both of us b/c I know how hard it is for me to walk when I'm dizzy and I also know how hard it is for me to have to carry him after he has a seizure and I am miles away from the truck. The hard part about that will be finding a stroller that's big enough to accommodate him, yet small enough for me to keep in our car or truck whenever we go someplace. I have learned that I need to carry a thermometer and Motrin with me at all times. He doesn't normally have febrile seizures (actually Thursday was the first time he had a fever before having a seizure), but I definitely need to make sure his temps are not going over 99.5 since he does have the seizure disorder. I also realize just how much we need this new neurologist to find out why he is having so many seizures and how we can better control them. We need some answers b/c he is still suffering. Sure the seizures are only 3-5 seconds long, but we have no way of knowing how strong and painful those 3-5 seconds are to him. They are obviously very strong b/c he passes out after. And not to mention how horrible he feels well before the seizure even happens. We need answers and I pray that this Dr can help him. we meet with her on the 26th of this month. I've learned that it's time for me to accept that my child has a disability and I need to make changes in our life to make his life easier. I can and I will do it for him. He deserves it.
All in all, our family vacation was a huge success!!
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