in the form of an EEG report. Medical terminology translated by myself (with a little help from google, lol).
So, we had Jayden's followup appointment this morning at 9. I didn't expect much to come of the appt at all. At this point, I'm so overwhelmed with everything. He's weaning off of one medication and weaning onto another, so trying to keep up with what he gets and how much is definitely a headache. Him constantly missing school b/c of seizures is just not okay with me. His ups and downs...every time I even dare to whisper that he's having a good day, it ends badly. We can't even enjoy our son the way we want to b/c we are constantly on edge, not knowing when the next seizure will be. Saturday night, after a WONDERFUL day, he had a seizure on the couch. Things can change in a matter of seconds for him. So add to all of that, me trying to figure out, pretty much on my own, what I can do to help save my child from this constant pain. What questions do I need to ask that have yet to be answered? Then what do I do with the answers? My brain is just clouded with it all, so I have been praying for some help or at least a small patch of sunshine so I can take a breath and regroup. Rebuild my strength that I need to continue fighting for my son.
God listens :) The Dr came in to the room (ironically, she seemed to have a new nurse) and observed Jayden for about 5 minutes. He was playing with a pop up book and used some words to communicate with the Dr and to put certain pieces of the book back together...
"Sit down" "I read book" "There it is!"
She was impressed and so were we. What I do understand is that epilepsy causes severe neurological damage so we have to constantly watch his speech to be sure that it continues to get better and not worse. He may forget certain things (like ABCs) but as long as he is still adding new skills (like the use of pronouns recently) then he is still doing well. After she observed him doing his thing, she asked about the seizures. We reported the seizure from Saturday night and she explained that we will not notice much difference in the frequency of the seizures until he gets up to the correct dosage of the medication he's slowly being started on. He starts with 10mg per day for 2 weeks (one week is already complete) and then we add an additional 5mg per week until he is up to 50mg per day. He won't get to 50mg until November, so we have to hang in there. Thankfully, the weather seems to be getting cooler so hopefully the seizures at school will decrease. The Dr wrote out the weaning schedule for us (he's weaning off of another med as well, so it's a bit detailed) and then asked if we had any questions, so I asked her to explain to me the results of the EEG b/c I wasn't exactly clear. She said something along the lines of "It tells whether he's having abnormalities in the frontal lobe or generalized and then I can know which medication to put him on. This particular EEG showed that it was time for him to get off of Topomax and try a new drug." She also said that unfortunately, growth and epilepsy do not go well together. As he grows, his seizures can get worse, which is why his meds have to constantly be adjusted. I totally understand the growth/seizure issue, but I still didn't understand the EEG, other than the fact that it was abnormal and told her to change the medications. Hmmm. But my brain is foggy so I just left it alone. She came back in the room with a copy of the EEG report and said "You can keep this for your records. It's probably hard to understand but some parents like to have it for their records." I folded it up and stuck it in my folder to read it later. I actually read it on the ride home and couldn't believe all of the information I was able to decipher without the help of google.
First of all, it read "during drowsiness and sleep, very frequent spikes were seen..." So we now know for certain that most of his activity is happening in his sleep and it's happening often (probably every night b/c he was still on all of his meds during the EEG). What I do know, from my own research, is that sleep induced seizures are harder to treat. We've been asking how we could be sure if he was having seizures in his sleep or not. Here was our answer. That also explains the prescription that the Dr wrote today for a night time seizure medication. So she is treating the issue, but not explaining it at all :/ The EEG report also reads that his abnormal results and location of the spikes suggests a "benign occipital epilepsy of childhood". You can google it (or use swagbucks and earn FREE stuff!!), like I did, and get a better understanding of it. Over two thirds of the seizures occur in sleep. It's difficult to treat, however many children who have an early onset (like Jayden has) generally go into remission within 2-3 yrs of the onset and completely out grow the condition after reaching puberty. SUNSHINE!! I am aware that there is still that chance that Jayden can fall into the small percentage of kids that do not outgrow it (he's fallen into that small percentage quite often) but just knowing that there is a chance that he CAN beat this is enough to make me stronger. Strong enough to keep fighting to increase his odds of beating it.
The Dr told us that there were no changes to the EEG, however, the EEG report (read by the Dr at the hospital) said that there was a difference. In April, he had focal slowing in the left occipital region. This EEG didn't show any slowing so there is question of a structural lesion in his brain. The Dr mentioned that she is contacting the hospital for the results from his MRI in January (why she doesn't have it already, I'm not sure), but it looks like there will be another MRI in his future. We meet with Dr. N (Jayden's 1st neurologist whom we love!) on the 11th and will get his opinion on the results and also a referral to the epilepsy center at Children's Hospital for their opinion. Just knowing that he can overcome this lit a fire under my butt and I'm knocking down every door possible until we get a clear understanding and a solution/plan to helping my little boy. Today, we are one step closer than we were yesterday and I am holding on to that hope, in the form of a piece of paper. Thank you Lord!
Monday, September 27, 2010
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...
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