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.

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!

Lunchtime

Anyone who knows Jayden, knows that he is not a fan of eating. But what most people don't know is just how afraid of food he really is. Sitting at a table with a plate of food in front of him is the worse form of punishment for Jayden. This fear comes from the constant stomach pains he had up until he was diagnosed with Celiac Disease at 2.5 yrs old. Can you imagine being in pain for that long? And everything you ate made it hurt worse? So his fear is definitely understandable. Everyday is a struggle to get Jayden to eat and there has NEVER been a day that he has eaten a full 3 meals. In fact, getting him to eat 2 meals in one day is rare. So when he does eat a meal, we are very thankful!

It always begins with him attempting to ignore the plate in front of him. Don't want to eat? Then just put on a show for mommy and daddy!!

Eventually, he realizes that he needs to at least try the food in order to get down from his seat. Although he loves his gluten free bread, anything that he eats always begins with this same look of fear on his face, and it breaks my heart :(

But usually he'll realize that he likes it and it didn't hurt his stomach the last time he ate it so he''ll take a few more bites. He never eats much at all though, but something is always better than nothing.

These pictures were taken last week. Today wasn't a good day for eating. He refused breakfast (gagged on it even) although it was his favorite, suasage with maple syrup. He also refused lunch and he hardly ever eats dinner. And this happens very often. It's funny the things we take for granted in life. A mother never realizes just how important something as simple as eating is until your child downright refuses to eat.

My baby

He's finally feeling better. Still not eating at all, but his referral has already been sent in to the insurance company for a dietician and we just have to wait on the approval. Or the denial. The representative I spoke with believes that it will be covered b/c of his celiac diagnosis, but she couldn't be sure. So we just wait and see. If we cannot get him eating soon, he will need a feeding tube. I have no idea how he's not starving, but he drinks his milk so that must tie him over. That and the cupcake he had yesterday at his cousin's birthday party! Yep! My big boy was able to enjoy a cupcake at a birthday party thanks to his wonderful Aunt who baked a batch of gluten free cupcakes especially for him. Oh he was so excited. I gave him his cupcake and he happily walked into the living room and sat indian style with the rest of the kids and enjoyed hos treat. It brought tears to my eyes. I think it helped that he saw that his cupcake came from the same place that the others came from, and not out of his bag. I need to figure out a plan to get my baby a cupcake at every party he goes to from now on. It may mean baking it at home, smuggling it into the truck, and then sneaking it onto the birthday child's cake table when Jayden isn't looking. And I may have to call ahead to ask about the cake colors b/c I'm pretty sure that's important too ;) Anything to see him smile the way he did yesterday...anything for my baby :

Prayers for Jayden

March has been a tough month for my little man. First, a bout of synovitis, followed by a pretty bad staph infection. Then Friday he had a really bad seizure at school. Saturday he started to run a fever and it hasn't broken much since then, even with Motrin. He's extremely congested and not eating at all, but he's drinking a TON which is very encouraging. I've tried pushing pediasure but he gagged on it and threw it all up. He's just not feeling well at all. I'm waiting for the Dr to call back, both the GI and the general pedi, to see what the next step has to be. He's been in the Drs office for sick visits 3 times in the past 2 weeks.