THE BEST UPDATE EVER!!

It's been a while since my last update, but I'm happy to say that Jayden is doing better than he's been in months!! He's like a brand new child! We did have a set back due to the addition of Keppra!! for his seizures. He was getting bad reports from school and he was out of control at home and not getting much sleep at night. He was also VERY emotional. If anything left his sight (including me, or a favorite toy) he would get frantic and fall out on the floor weeping :( I read online that children with epilepsy usually have an increase in seizure activity whenever they get sick. Jayden had strep throat and bronchitis when his multiple seizures started, so I say he was pretty sick! So I was thinking that he really didn't need the Keppra!! anymore, and since he was on the smallest dose, I wouldn't need to wean him off. I could just stop it. I called the neurologist and explained my concerns and he agreed to stop the Keppra!! and said for me to keep it handy in case the seizures start again. I think his last dose of Keppra!! was Monday morning, and so far he has been absolutely fine. Each day of school, his report said that he participated well in EVERYTHING! And one day we pulled up to pick him up and saw him taking turns on the slide with his friends. He made a mistake and pushed one little boy in an anxious attempt to get one last slide in before he went home and he got down and did the sign language for sorry and even said "Sorry Trevor"!! I was so proud of him!

Now, I have even better news!! My child EATS!!! He has been eating at least 2 and sometimes 3 meals a day! And get this, he actually ASKS me to eat!! WHO IS THIS CHILD?? This is not the same child who was on the verge of getting a feeding tube placed b/c he wouldn't eat anything other than McDonald's fries once a day! Now he's eating grilled chicken and begging for more. And I have to say a big thank you to a lady named Elizabeth Barbone. I've searched the web for Gluten free recipes, have two other GF cookbooks, and I've tried so many tricks, but all of those recipes were bland and grainy and Jayden wouldn't go near them. Well I saw on a website that this book was a must have in a gluten free kitchen. I saw that it was for baking and thought "I really need FOOD recipes, not desserts" but I still went ahead and ordered it b/c I know I'd been looking for a better cornbread recipe for Jayden. Well this book came in and there's a recipe for buttermilk pancakes. I decided to make a batch since I had all the ingredients on hand. First pancake came out and I tasted it, fully expecting a mouth full of sand...UM, boy was I wrong!! That pancake was better than any gluten filled pancake I've ever tasted. It tastes like the good old fashioned pancakes my grandma used to make for us as kids!! I ate the entire thing!

Then when the next one came out, I offered it to Jayden. I watched him from the side of my eyes and he never sat his fork down. He was happily eating the pancake! And then, when he was done with it, he sat his fork on the table, finished chewing what was in his mouth, then reached his plate out to me and said "Mommy!! MORE!!" HAPPY TEARS!!!! OMG, I gave him as many as he wanted. He stopped at the third :) I froze what was left and he's been enjoying pancakes and sausage for breakfast for a week now. Then he'll eat a sandwich for lunch (usually a late lunch since he eats so much breakfast now!) and a chicken tenderloin for dinner if he's in the mood. I know it's repetitive, but this is a miracle for a child who was living off of fries and milk! And he put on the weight that he lost when he was sick. He looks and acts so much healthier now!

He has a GI appt scheduled for the 4th and we are also meeting with a dietician and were supposed to discuss a feeding tube. I seriously doubt that we will need to discuss that tube anymore! Praise the Lord! I know he will still have set backs since he has the epilepsy, but for now we are living in the present and taking it one day at a time. Thank you to everyone who has been praying for him! And if you don't already have Elizabeth Barbone's cookbook, you need to get it!! It's a must for ANY kitchen! Even if you are not gluten free!!

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!