Prayers for Jayden please

As you know, Jayden's been going through an extremely long weaning process to get him off of 3 different medications that are not working for him and on to one single medication. First, we started by weaning him on to the one medication he will be taking (if it works for him). He had been doing well with the weaning. A few behavior issues here and there, but no bad issues like increased seizures. I think he's had 2 seizures since the 4th.

Anyway, I've been keeping a daily journal during the process. We increased his dose of the Zonegran on the night of the 15th. Yesterday, the 17th, I went to update his journal for the day and when I was logging his behaviors I noticed there was nothing to report for that day b/c he didn't really do much but lounge around. Of course I won't complain about that b/c we all need that time to regroup! However, he took a really short nap and had a very hard time falling asleep last night. Then this morning, he slept in until 10:10 (he had usually been waking up at 7:30 each morning). I peeked in on him a few times b/c I get really nervous when he sleeps late. At 10:10, he woke up and called for me. I climbed in bed with him and we laid there snuggling and hiding under his covers "from the monsters". Then he said something that I couldn't understand so I asked him to say it again. He struggled to find the words (which he usually doesn't do) and then said "I have to pee pee." I really was not worried about him at all at this point. It was still just a typical morning for us, just with a late start. After he went to the bathroom we went downstairs and I gave him his medicine and he sat at the table and was waiting for his late breakfast/lunch. While I was fixing his sandwich he had a dazed look to his face and he kept asking me for his "mama". Just for reference, he does not call me mama. He calls me mommy. And I know that kids "grow up" and start saying mama b/c it's cooler ;) but this wasn't the case. He wasn't asking for me b/c I was right there and he was still pointing across the room for something else called "mama". I kept asking him what did he mean and he would just repeat "I want MAMA!" and he was getting very upset b/c I didn't understand. My husband came downstairs and Jayden said "Daddy, I want mama." My husband told him, "Your mama is right there." He started crying "No I want mama!" and pointed to our room. My husband took his hand and told Jayden to show him what it is he wanted. We haven't had to do that with him since he was 2 yrs old :( So he led my husband to our bedroom, over to my side of the bed, and pulled back the sheets. Then he said "Mama's gone!" Mike came back in the kitchen and said, "Nia, I think he didn't know who you were for a second." We asked him where is mommy and he got a little frustrated but soon enough, he pointed to me. It hurt my feelings a little but I figured he was just still very tired or something. Well after he ate he continued to talk but much of what he said made no sense. It's hard to explain, but he wasn't babbling which he does a lot when he's playing with toys. He was actually holding conversation with me, but none of it made any sense. He called the front door a "baba". Then, after 2 hours of being awake, he fell asleep on the couch. I didn't want to over react, but I sent a quick email to the Dr (I'm so grateful that she gave me the ability to be able to reach her) with my concern. She immediately emailed me back and told me to bring him in tomorrow morning.

My guess is that he's having a different type of seizure that is making him very tired and confused. I'm definitely ready for him to be well and catch a break! Please keep him in your prayers!

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.

Double Edged Sword

Yesterday evening, I rec'd a call from the nurse practitioner that Jayden was supposed to see. Unfortunately, we had to cancel the appointment b/c Tricare wouldn't approve the office visit or any tests that she ordered since he was not an established patient with any of the affiliated Drs. The medical insurance obstacles. Well, she wanted to see if there was any way that she could help over the phone, as she had heard about Jayden having complications and no neurologist to turn to for help. She asked for some detail and thought really hard on how she could help and what else I could do to get him through until January 4. Unfortunately, the Dr that he's going to be seeing is out of town and won't return until January 4, so that's why he cannot be "worked in" on her schedule, however, the NP told me that she'd make some calls to see if he can possibly get in to see one of the partner Drs prior to the appointment on the 4th. She said "No promises", but I'm truly not asking for promises, just for someone to show some concern for my son and to actually help us. And she's doing just that.

We talked for about 20 minutes and after giving her a brief history along with the current medications and dosages, we both came to one(possible) conclusion: The Trileptal could be causing the seizures to get worse due to the extremely high dose he's on since it's being used as the sole seizure medication right now. I always wondered if that was the case b/c there have been multiple occasions when Jayden would have seizures immediately after taking his medicine. I do not plan to stop this medication without first seeing the new Dr (neither did the NP encourage me to stop it) because I know that could very well make matters worse.

Today has been a pretty bad day for him today. He was having seizures this morning so I put him in bed for a nap to see if that would help. He only slept for an hour (he usually sleeps 3-4) and he came downstairs and immediately started having the seizures again. He's very uncomfortable right now and I'm just hoping we can avoid the ER tonight...

Always without warning...

We needed to run out to Sears tonight to price some ranges for the kitchen at our property in Jackson. We made sure that Jayden had his bath, dinner, and medication prior to leaving in hopes of avoiding a seizure b/c he hadn't had one all day and we still haven't verged off of this daily seizure road just yet. He was in a good mood. Talking on the phone to Santa and running about singing songs. We got in the truck and he put himself into his carseat. A song came on the radio that both he and I like so we started singing that. When we pulled up to Sears and Mike turned off the truck (causing the song to stop), Jayden told him "turn it on!". When the song went off, we all proceeded to get out of the truck. Jayden climbed out of his seat and walked over to the door so I could get him out of the truck. As soon as he jumped down, he was begging me to hold him. I thought he was just being a little lazy and just wanted to be carried so I joked with him and said "You are half my size. Why don't you hold me?" He kept insisting "Hold me Hold me Hold me!" I didn't pick him up (which is now breaking my heart) so he turned to his daddy and pleaded for him to hold him. Mike held his hand and we continued to walk through the parking lot. Jayden was whining so I reminded him that Santa is watching. Jayden shouted back at me "No!" I asked, "So you don't want Santa to bring you any toys?" He shouted "No!" I said, "Well that's not nice of you so you need to stop shouting at mommy ok?" and he said "Yes ma'am" By this time we were in the store and he just kept whining. I reminded him that we were stopping for ice cream after the store so he needed to behave. Then he looked up at me with the saddest eyes, filled with tears, and said "Mommy, I scared!" This is always our clue that he's about to have a seizure so I immediately picked him up and tried to help him to slow his breathing b/c hyperventilating can bring on a seizure. He relaxed for a minute but then the seizures started, right there in the appliance section of Sears. The associate gave me a seat and I had to take off Jayden's jacket and his shirt right there in the store b/c he overheats when he has the seizures. He screamed and grabbed at the back of his head and yelled "Mommy!!" It was awful. We couldn't leave until the seizure was over, so I sat there consoling Jayden and my husband was able to get help from the associate (while taking several breaks to come check on Jayden). The associate offered a glass of water b/c when the seizures stopped Jayden was pale and sweaty. Unfortunately, he never became alert enough to even drink the water. We did get him to answer some questions though and to tell us his name, so he was conscious. We carried him out to the truck and put him in his seat and he said "Mommy? I sleepy." I told him he could go to sleep and he sure did. It was his bedtime when we got home so I decided not to arouse him and just tuck him in. He was awake by then, but very very groggy, and he was able to help me take his clothes off. He told me goodnight and I love you. As always, the monitor is on in his room.

This is our life. It can go from being a very good day to being a horrible day in a split second :(

So...

I couldn't think of a title to this post b/c I still haven't wrapped my mind around all of the new information that was thrown at me during yesterday's appointment with the genetics Dr.

One thing I want to update on right now is that he does not agree with the anhidrosis diagnosis alone. Jayden isn't sweating anymore, so clinically it is anhidrosis, however, the Dr does not feel that it has anything at all to do with Jayden's medications. Instead, he thinks that we need to dig deeper b/c it is possibly being caused by something that we are not seeing. So he's having a skin biopsy done on tomorrow afternoon :( Also, he is being scheduled for another MRI asap due to the fact that his seizure activity increased in May, we noticed the lack of sweat this summer, and he started regressing in April. Please keep Jayden in your prayers.

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.

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 :)

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.

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...

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.

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!!

My sensitive boy

Ever since Jayden was released from the hospital in April, we've noticed that he is VERY sensitive to the sunlight. He hates for it to touch his skin. I figured it was just him getting used to the change in climate, but now it's getting worse and worse. He RUNS to find shade now. And when the sun touches his skin he immediately starts crying, scratching, and fidgeting really badly. Today we had to run into walmart and he was crying and grabbing at his neck and then tried to stick his head under my shirt. And when we put him in his carseat he cries in pain if the sun is on it. And his car seat is cloth so it cannot burn him. we've tried putting hats on him but he still complains about the back of his neck and his legs and arms. I cannot dress him in long sleeves and pants in the summer temps! He starts summer camp next week and I'm worrid about how he will tolerate it. At school, their playground is shaded. I'm not quite sure about the playground at camp, so I will have to let the camp counselor know. It seems like it's one thing after the other with my poor boy. Because of this, we are considering canceling our annual trip to Disney World in August. There is no way he will be able to handle being in the sun for hours and we would just be asking for him to have seizures. We are going to go in November instead. J has an appt to see his neurologist next week and I plan to bring this up to him b/c at this point I don't know if it is a side effect of the meds or if it's just something that comes with epilepsy. I'm sad to think of him spending his summer indoors.

1step forward, 2 steps back

Well, since that last MARVELOUS update, poor Jayden has contracted ANOTHER staph infection. He had just gotten over a pretty bad one in March. This one is just above the area where he had the first one. He's on antibiotics for it and it's draining, but painful for him.

So today was his followup with the GI Dr. I was looking forward to this appt b/c Jayden has been eating so well lately. Well it seemed great to me b/c he went from not eating anything, to eating 3 meals a day (although very small portions and no real variety), and lately he's been eating 2 meals a day. I could even see that he'd put on weight. So we got to the Dr this morning and he weighed 32 lbs. He was 30lbs when he got out of the hospital, so he gained 2 lbs. The Dr walked in the room and the very first thing she said was "He's lost weight and I'm very concerned about that." Jayden weighed 35lbs at his last visit 2 months ago. During that visit, the Dr told me that she was concerned about his diet and that if he lost any weight, we'd have to discuss a feeding tube. So here he is 3 lbs lighter than he was at the last appt. She sent him for blood work and we have to send in a stool sample. Depending on those tests results, he may or may not need to have another GI scope done.

We headed upstairs to get his blood drawn. Jayden usually does so well with this, but I think after being at the Dr for the staph infection and remembering that pain, he was not ready for more pain. He did cry when they drew his blood, but he definitely didn't freak out. No kicking or screaming, just an upset cry. When the nurse finished, she gave Jayden 2 spiderman stickers and a sucker. We walked out and I was opening his candy when Jayden started crying and saying "Scared, monster." and he was walking very wobbly. I figured he was being dramatic so I said "It's okay baby. It's all over, no more needles." and I continued to open his candy for him. Then he stumbled over to me and clenched on to my leg really tight and let out a loud scream and said "MONSTERS!!" Then he was hyperventilating. He'd had a seizure :( I had to sit down with him and calm him down but I couldn't sit for long b/c I was starting to have a panic attack and needed to get out of the clinic for some fresh air. Jayden was a s sack of potatoes by then. I put him in his seat and we went to grab lunch (that he wasn't even alert enough to eat) and then headed back to the clinic to meet with the dietician.

As it stands, Jayden needs 1400 calories a day. The dietician estimated that Jayden takes in approximately 650 calories or less, which is not good. I told her what all I've been doing and she said it really sounds like I'm doing all I can. She suggested some minor changes to increase his caloric intake, but really she believes that his gut is just taking a longer time to heal. She mentioned the feeding tube as well, so I do feel a bit defeated and I feel anxious b/c I have 4 weeks to get him to gain more weight and even then, that won't guarantee us that he won't still need a tube. I know it's not the worse thing in the world, but I truly expected to hear different news this morning.

We made it home and Jayden got in his bed and immediately threw up all over himself and his bed. Today has been one of those days that I just want to wake up and start all over again. And also, I went to the Dr for my back last week and the x-ray showed that something is wrong with my discs, so I'm having an MRI on Thursday. I'm doubled over in pain now, from having to carry my sack of potatoes around after his seizure today. I hope that whatever is wrong with my back is easier to fix than Jayden's Celiac and seizures are b/c he depends on me!

BTW, I just want to make sure no one is freaking out thinking that their 3 yr old is underweight and may need a feeding tube b/c s/he weighs the same or less than Jayden. He's not underweight, (although he is on the lower end of the scale in comparison to his height) but it's not a good thing for a child his age to lose weight and we already know that he has the Celiac Disease so he has intestinal damage.

Back in the hospital

Jayden's seizures returned with a vengeance on Monday. Between Monday and Tuesday, we'd lost count of the seizures and by Tuesday afternoon, he started vomitting which is a serious red flag. I called Jyden's neurologist and the nurse called us back and told me that Dr. Nelson wanted us to take Jayden to Children's Hospital to be evaluated by Dr. M, a pediatric neurologist. Now, Dr. Nelson is Jayden's neurologist, but he was seeking a scond opinion on Jayden's condition and he obviously thinks highly enough of Dr. M to trust one of his sicker patients in her care. So we took Jayden to Children's ER. He had a couple of seizures during the ride there and he threw up all over the backseat. I actually had to hold him on my lap. So he was in pretty bad condition. We got to the ER and I signed him in and we waited...an waited...and waited!! He was called back for triage and when I stood him on the scale he fell. He couldn't even stand up :( The nurse took his vitals and returned us to the waiting room and we waited there for close to an hour. This was the 4th time we have had to take Jayden to the ER for seizures (the 2nd time in 4 days) and this was the only time he had to wait out in the ER waiting room, which surprised me at a hospital exclusively for children. And it didn't get any better once we met the ER dr. He asked some questions and we told him that Jayden had had countless seizures that day and that he vomitted twice on the way to the ER. We also told him that Dr. Nelson ordered us to bring Jayden there to be seen by Dr. M. The ER day told us that Dr. M was not at the hospital and "I can tell you that she is not going to come to the ER to see him b/c this is not an emergency." Say what?!?! So I asked him if he could please contact Dr. Nelson b/c he told us we needed to bring Jayden here. So the ER dr huffs out of the room and minutes later we hear him screaming back at someone on the phone and talking about Jayden and saying things like "no seizures in the ER", "does not need to be admitted", "playing with his toy"...Did I mention my mom was there with us, and that she is a nurse? So she got angry. The ER doc came back in an basically told us that Dr. M is pissed b/c Dr.Nelson shouldn't have sent Jayden to the ER b/c it isn't an emergency and she will not come to the ER to see him but she will be happy to see him if we make an appt. Then he went on to tell us why it wasn't an emergency: "Jayden followed orders, he opened his mouth when I asked him to." "He has not had any seizures in the ER." So I guess the countless seizures he had through the day were irrelevant. He also had the nerve to say, "he's playing with his spiderman toy, he's fine." Um, seriously, Jayden was dragging and barely holding on to that spiderman toy and every now and then he would attempt to make the thing move. Usually, Jayden would have Spiderman throwing invisible webs at your face or climbing up every wall in the room while he would attempt to do the same. This pissed me off b/c that's a part of the reason it took so long to find out he had Celiac Disease. Even when he feels bad, he tries to fight through it. He's a fighter! And the GI drs told me he was too "happy" to have anything wrong with him. So don't go there. My mom gave the ER dr a piece of her mind before he politely handed us discharge papers after not doing a thing for Jayden. We took him home and went to bed. The next morning he woke up still vomitting all over. This time, right in my face. Fun. I called the Dr and left a message about what happened the night before. Then we tried just letting him watch some tv and relax. Well every sound coming from the TV triggered a seizure. Then he started hallucinating. Great. Dr. Nelson called back. I explained that maybe I misunderstood the instructions from his nurse about last night. Dr. Nelson said that there was a misunderstanding but that it wasn't on my part. His intentions were for Jayden to be admitted to Children's Hospital on Tuesday and consult with Dr. M once she made rounds on Wednesday. He said that Jayden NEEDS to be in the hospital until the seizures are under control, so we came back to Tulane. We signed in at the ER and barely sat down for 2 minutes before he was taken to a bed. A CT scan was ordered immdiately b/c seizures and vomitting is not the perfect combination. Thankfully the CT scan came back normal, and he was admitted for further testing and observation.

Today he is doing well. He hasn't had any more seizures since being admitted and starting Keppra!!, so I'm pretty sure that when they discharge him he will have to continue that awesome drug. It's awesome b/c it stops his seizures, but it's also awesome (sarcasm!!) b/c it makes him incredibly emotional and angry so I suspect he will have a rough time in school next week if he's able to go back by then. But no seizures was the goal and I think we've reached that. He's been in great spirits while here. Right now he is riding the halls with his daddy, on a tricycle and he just brought me some food that he cooked for me in the playroom. I'm waiting around in the room for the neurologist to discuss a plan of action and hopefully get discharged. Thanks to everyone who has been praying for Jayden. God is definitely healing him!

Seizures and hospitals

My poor little guy has had a ROUGH month, to say the least. Thursday he had a followup appt with his neurologist. He wanted to knwo how Jayden had been doing on the new medication combo. In my opinion, he had been doing well b/c instead of seizures every 2 weeks, he actually went 6 weeks without one and when he had one it was pretty mild. But then he had a really bad one at school, so that was a concern for the Dr. He also believes Jayden may be having seizures in his sleep b/c Jayden sleeps ALOT (4-5 hour naps and 12 hours at night) and if we wake him up out of his sleep he's very lethargic, cranky, and disoriented. So his night time seizure meds were increased. The ironic thing is that when the nurse took his vitals Jayden's temp was 101. He wasn't as active as usual, but he wasn't acting really sick either. But when we got home it was a different story. He was grabbing his neck and crying all night about the pain. I looked in his throat and saw small white spots and his breath had a bad smell. I knew he had strep. Thursday night his temp stayed high, even with Motrin. Of course the Drs offices were closed on Good Friday, so Thursday night I called the on call nurse. The nurse was pretty rude, telling me that these symptoms just set on so I need to give it time to let his body work, to take his clothes off, and that a high fever won't hurt him. That's where I had to cut her off. I told her he has a seizure disorder and a high fever could definitely hurt him. So then she says "Well all offices are already closed and they will be closed tomorrow. He can't have his throat swabbed over the phone and the Dr will not call in an antibiotic without seeing him first." Ok, wow. She was rude. So I simply asked her if there was an Urgent Care center in the area and she told me no. So we toughed it out. Tylenol/Motirn around the clock. He slept in bed with us b/c the fever kept shooting up so high and we worried about seizures. Friday morning I gave him the fever reducers and by the afternoon. after a nap, he seemed better. But by Friday night he was shivering yet burning up. I gave him more meds and we went to bed. At 2 am, my husband woke me up saying Jayden was burning up. I took his temp and it was 104. We took the blankets off of him, as much as he protested b/c he was cold, and just watched him. At 8 am I called the Drs office and got him an appt to go in. He most certainly had strep throat and bronchitis. The Dr gave him a penicillin injection and made us stay for 20 minutes to make sure there was no reaction. He told us that the shot would knock the infection out really fast so Jayden should be like a different child that afternoon. Good news! We were ready for him to feel better.

But it didn't quite work out that way...We got home and put Jayden in our bed. He asked to eat and I was so excited b/c he hadn't eaten a thing AT ALL since Wednesday night. I warmed him a hot dog and took it to him in the bed. I tried to feed it to him and he said no and put his head back on the pillow. I sat the bowl aside and he started screaming. A very high pitched scream. I tried to pull him up into my arms but his body was so tensed and being pushed into the bed, I couldn't get him up. My husband pulled Jayden's thumb out of his mouth b/c he was biting down. I finally was able to get him in my arms, and it felt like forever, and he continue to tense up and seize for about 45 seconds. Then he relaxed and closed his eyes, the typical postictal state. But just as soon as he relaxed, he screamed again. Another seizure. Much shorter than the first though. And this time he immediately passed out, which is also a typical postictal state as long as he's breathing, and he was. I held on to him for a while and talked to my mom. I told her I wasn't worried, even though this was the scariest one since the Thanksgiving Day seizure b/c he nearly bit his thumb off and I felt helpless. But he was asleep now and Jayden always feels better after a nap when he has a seizure. So he napped, and we napped. I woke up and did some house work and Jayden stayed asleep. Close to 5 and 1/2 hours. I woke him up to see how he was feeling and it was odd that he was still in the postictal state. This is never the norm for Jayden. Usually after a nap, it's as if nothing happened, but not this time. I didn't panic though b/c I also knew that he hadn't been feeling well so he must have been exhausted. I let him stay in our bed and turned on the cartoons. His temp was back to normal, 98.4. I called my mom and I said "I'M BORED!!! Come over and watch movies!" So we were trying to figure out what movies we would watch when Jayden screamed again. It was quick though. He screamed, tensed up, and then turned around and said "MOMMY HELP!!" I held him and he immediately fell asleep again. My mom told me to bring him to the hospital b/c by this time he'd had 3 seizures and was not recovering from them. I was getting dressed and he had another one. He remained disoriented on the ride to the hospital. We got there and they took him straight back where he just layed on the cot. He was also still experiencing dizzy spells and wouldn't allow anyone to move him without him screaming. The ER Dr came in and as she was examining him he had another seizure. She left the room to contact Jayden's neurologist. They gave him a huge dose of Keppra!!, the drug that we despise b/c of how emotional and hyper it makes Jayden, but I really didn't mind as long as it would help him. Then the ER Dr came back in and said that Jayden would need to be admitted. At this point, the seizures were no longer the concern b/c they were so short. The concern was the fact that he could not come out of the postictal state. We got to his room and they had to bring in oxygen tanks and other scary stuff, just in case. Jayden slept peacefully all night, with no seizures. He woke up the next morning, and was very quiet so I was worried, but soon enough he said "Juice" "On" (for the TV) and "GiGi" (his favorite person!). His vitals remained satisfactoryand the Drs concluded that Jayden was having so many seizures b/c his body was working really hard for the past 3 days to fight off the infection and once the penicillan kicked in, his body reacted to not having to fight so hard so suddenly. They didn't think it was a reaction to the penicillin, but they still wanted to watch him at least until lunchtime and to give him another dose of Keppra!!. So we all hung out in the room. My mom brought him an Easter basket and pretty soon Jayden was up playing around and making us laugh. His gait was still very unstable, but the Dr thinks it was from the Keppra!! and not b/c of the seizures, which was a relief b/c with the last seizure he had, he couldn't walk at all for about 4 hours. So we were staring at the clock, anxious to get discharged and then Jayden screams and had another seizure. Went straight to sleep. We had to report this to the nurse and of course we didn't get discharged at lunchtime. The good thing, though, is that after that nap, Jayden recovered and was bright and alert. So they monitored him for another 3 hours or so and told us that they would discharge him as long as we felt comfortable and knew when to bring him back in to the hospital. The neurologist had them to write an increase on his current seizure medications and I can't wait to see him next week so I can hug him for not sending Jayden home on that Keppra!! drug that we hate so much! LOL!

This morning, Jayden does have a fever of 100.8, but I gave him some Tylenol and he's lying down watching television. I'm hoping that he is on the road to recovery now b/c this has been a whirlwind of a weekend for us!

13 days...

I may as well use my blog as a journal as well for the seizures. 13 days after adding an additional medication for the seizures, he had another one tonight. It was very short and he just seemed to hallucinate for a while, freaking out saying he saw a monster, and then he got VERY dizzy and wobbled and fell all over the floor. My husband picked him up and his eyes couldn't focus, they just kept rolling. Now he's exhausted and cannot sit up b/c the room must still be spinning to him. I'm calling the Dr tomorrow morning to report the seizure. A part of me is PRAYING that they do not increase the dosage on the Keppra b/c that medication has caused his behavior to spiral OUT OF CONTROL, but then another part of me just wants them to do whatever they can to stop these seizures.

Another one...

Jayden had another seizure today. It was very short, but he was still just as lethargic and non responsive as he was when he had the seizure on Thanksgiving day. The ER doctors told us that it's okay for him to sleep after the seizures b/c they wear him out, so we let him go to sleep and I am eyeing him like a hawk. Surprisingly, I didn't freak out when he had the seizure like I thought I would have. I just felt sorry for him b/c he was so uncomfortable and scared. I am worried, though, b/c I want to know why he keeps having them. I want to know what's wrong with him. I want the Dr to fix it. I left a message for the nurse and I'm waiting for a call back. Please pray for my baby.

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Update: The Dr just called us back. Jayden's MRI is normal (THANK YOU LORD!!), now I can stop inspecting his head for lumps and knots that don't belong there! However, his EEG is still abnormal, but that is no surprise b/c we are seeing the seizures happen. So he may be epileptic. The Dr is starting him on the pediatric dose of Keppra, in addition to his Trileptal. The Dr warned us that Keppra is known to cause behavior problems in small children. This could be a problem b/c Jayden is currently in behavior therapy. But the seizures have to get undder control, so we will do what we need to do. Hopefully once the seizures are controlled, his behavior will get better. I have noticed a difference since he started the Trileptal, so hopefully the Keppra won't make much of a difference. He has to go back in to see the Dr in Jan, so I will keep you posted. Please keep praying for us!

A Thanksgiving to remember...

How was YOUR Thanksgiving? Let me tell you all about ours!

Our day started off really slow. We actually hung around the house in PJs for the first half of the day. We toyed around with the idea of going to get our tree (out of sheer boredom!), but decided that we'd rather stick to our tradition of picking out our tree on the day after Thanksgiving. Jayden went down for a nap, my husband ran to 7 (or was it 13?!) gas stations to find me a Thanksgiving newspaper, and I knitted. Bored. I thought about gumbo and wished I had some. Instead, I made me a turkey sandwich and announced that at least I enjoyed some turkey on Turkey day. Jayden woke up from his nap in a great mood and my husband said "I wonder if Bass Pro Shop is open today?" Actually, they were and Santa was there! So we got dressed and headed over to Bass Pro. Jayden remembered the building from last year and as soon as we pulled up he yelled, "HO HO HO!!" He knew he was going to see Santa. We got inside and Jayden was saying, "Santa, where are you??" We got to the back and Jayden ran straight to Santa's lap. He took some pictures and then went to write a letter to Santa and we snapped some pictures of him mailing his letter. I should really get back to sharing pictures on this blog. Really, I should! After he mailed his letter, he ran back to Santa again. He just couldn't get enough of the big guy (and the candy canes!). Next he played on some boats and sat on some quads. Then we decided to go out for our non traditional Thanksgiving dinner at LoneStar Steakhouse. This is where someone decided that our day was simply too boring and we needed some excitement...

Lonestar was dead! What? No one eats steak for Thanksgiving?? LOL! It was fine for us though b/c we knew Jayden would do better in a less crowded environment. We got our seat and Jayden unrolled his silverware and started playing with the utensils, as usual. He was also climbing under the table going to sit with my husband and then coming back to sit with me. Nothing unusual for him. We colored on his coloring page, I traced his hand, and I gave him his drink. He was totally fine. Then my cell phone rang. It was my sister in law calling to check in on us since we weren't able to make it to the family dinner in New Orleans. I could hear all of the chaos in the background and I said, "Oh yeah, it sounds hectic over there!" As we were talking, Jayden was still playing under the table (at least I thought he was) and then he started screaming. But Jayden is a screamer, so I didn't even think anything was wrong. I told my siter in law, "Girl, let me tame my child, I'll call you back!" I hung up the phone and Jayden was closer to my seat so I was trying to pull him up and my husband was trying as well. Jayden was facing me and screaming, but I wasn't really looking into his face b/c, again, I didn't think anything was wrong, just that he was being naughty. I noticed that he was extremely hard to pull up, as if he was stuck. Then he started screaming and crying "Mommeeee, mommeee, mommeeeee!!!" I heard fear in his voice and it was a sad cry, not his angry cry. I looked down in his face and it was like he was begging for help. His fists were clenched and I had to PRY the fork out of his hand. I kept trying to pull him up and reached down to see if his leg was stuck or something b/c something was hurting him. Then I noticed his legs were crossed and he wouldn't uncross them. It still didn't cross my mind that he could be having a seizure though. I could NOT get him from under the table, so my husband was able to grab Jayden's shirt and pull him from under. Jayden got into the booth by my husband and his expression was just distant. He stared up at the ceiling trembling, clenching the table and whining saying "Scared scared" and at one point he said "Spiderman", but the look on his face was like he had checked out. I looked at my husband and I said "Now I think that was a seizure." Only, we didn't know what to expect next. He leaned against my husband and wanted to be held close. He screamed if he wasn't snuggled up against his daddy. Mike took him outside and I was calling my mom to see if a trip to the ER was necessary. My mom didn't answer. The waiter deliever our food just as Mike came back and gave Jayden to me. He was still whining and the only word him would say is "scared" and his voice was getting weaker and weaker. Then he got very cold and clammy and just went kind of limp. Mike ran to get our waiter, got our check, and left...no dinner for us! As we got outside, Jayden wasn't responding to me anymore, just a very weak cry. I contemplated calling an ambulance at that moment, but I knew I wouldn't be able to wait around for one so we jumped in the truck and I sat in the backseat and held Jayden while Mike drove to the ER. He had on his hazard lights, but the traffic wasn't bad at all and we got to the ER pretty quick. I went to checxk him in and the girl at check in was basically ignoring me at the window so I said "My son is having seizures and is non responsive. Then she noticed the limp, moaning child in my arms and got us checked in and called back immediately. In triage, they made me stand him up and he was just moaning, not responding to anything, not even candy or spiderman stickers. And when I stood him up he fell. My baby couldn't even walk :( I was SO scared. All of his vitals were stable though. We went to a room and 3 ER doctors checked him out. We were telling them that we "think" he had a seizure, but we just weren't sure. The Drs all agreed that Jayden was showing the classic symptoms of a generalized seizure that affected his entire brain, which is why he couldn't walk or talk and why he was probably hallucinating when he said spiderman when we were in the restaurant. The main concern was how long the seizure lasted. We believe it lasted for 30-45 seconds, but we are certain it didn't last for 5 minutes, which is when they say it gets dangerous for him. So now the hard part was him recovering from it and his brain activity returning to normal. After about an hour in the ER, he was talking again. He even asked the Dr for some juice. He still couldn't walk though and that was very scary. We had to stay until he was pretty stable on his feet. Once he was able to walk without falling backwards, they let us go. They gave us a prescription for a medication called Diastat, which is basically a seizure medication given rectally to stop a seizure that has gone on for 5 minutes or more. We have to carry it with us where ever we go. The ER dr also told us that it is VERY important for him to have a followup with his neurologist since this is basically the first time he's had a seizure like this (that we know of) since being on his antiseizure medication. His neurologist needs to know this b/c he may have to change Jayden's medication or the dosage, and he needs to get the results from Jayden's MRI back stat b/c his condition has changed since starting his antiseizure meds. So the clinic is closed today, but I will be calling on Monday morning. His MRI is scheduled for Wednesday, so I'm hoping that the Dr can squeeze us in on wednesday after the MRI and hopefully have some answers for us.

Jayden bounced back by 10 o clock last night. He did throw up twice, which is what I was waiting for b/c whenever I've witnessed someone have a seizure, they usually threw up afterwards. After he threw up, he was jumping in bed, requesting movies, and being bossy! LOL. Jayden was back. This morning he was OFF.THE.CHAIN. But let me tell you how thankful I was to have my hyperactive, mischievous, son back. Last night, when he was limp, quiet, non responsive, and not able to walk, I just imagined what life would be like if my baby didn't gain his skills back. Things like this happen to parents so often when children have brain injuries, and I just had that fear. I thank God that we didn't have to endure such heartache and I pray for the parents that are going through that hell.