~seizure FREE me~

~seizure FREE me~

Sunday, April 25, 2010

Another hospitalization

First blog entry for Atty. Well really for me, to vent about this whole thing with Atty. Because now my son has some serious health issues. That's hard to even type. If you have been following our family blog then you already know about Atty and you've been with me from the start. All the way from this post and maybe that's why you followed me over here. I wanted to have a place to chronicle everything that is going on with him and a place for me to talk about how I feel. I hope to update it regularly so that I can look back and have a clear picture of what we were going through from day to day. Living it is a blur. I hope to come out of this on the other end with a healed child. I hope he will some day be seizure free, but if that turns out to not be a possibility I want him to be as whole as possible. I want him to be happy and to feel as free as he can be. At the very least I want to have the story for Atty to read some day so he can see how brave he was and how hard we all worked to heal him and how we did it together as a family. How his mommy never gave up. Never.

This is going to read just like a journal. Some of it might not make any sense. Some will just be free flowing thought, raw emotion. It not going to be fancy, or well read, or eloquent. Just a tired mom writing about an emotionally overwhelming struggle to help her son. Please don't judge. Understand that I am writing it as I see it and as it works for our family. I have no preconceived notions that what works for us (or doesn't) will be the same for others. I am learning. I am going on intuitions. On research. On hope. On love. And most of all Prayers and Faith.


We had another week long hospital stay. After Atty's muscle biopsy, two weeks ago, he stopped walking or sitting up at all. He started throwing up numerous times a day and became dehydrated to the point that I had to bring him to the ER at Children's hospital. While there they put an IV in to pump him full of fluids and gave him anti nausea medicine. Atty's wonderful doctor at Children's tried her hardest to get them to put us on the fast track for the Ketogenic diet while we were there, but she is coming up against road blocks left and right. It looks like we still have to wait until at least the end of next month. We both feel strongly that the Ketogenic diet is what Atty needs. It's frustrating to feel so sure about what your child needs and to have been so right about so many other things and to still not be listened too. I am thankful that finally we have one doctor who is ready to listen to me. But she can only get so far. She has seen that I am being ignored. She has seen that I took my child in when he was only 18 months old already worried about possible epilepsy, NF1 and Mitochondrial disease. She was blown away by this. There wasn't enough evidence at the time so all they did was send him in for a sleep study and I left feeling like maybe I was jumping to conclusions. She has seen as every medicine has failed just like I knew it would. Atty processes things differently and I just knew it would be the same for the medicine. I can't tell you how I knew, I just did. I learned early on that he didn't tolerate certain foods well and removed those from his diet. So when I started reading about the Ketogenic diet it seemed to me that this was what Atty needed. Seems like it's all tied in together. I think his body will respond to it. I brought it up to her and she agrees. But there is a waiting list to start the diet and Children's hospital is the only hospital in this area that offers it. Mean while he is getting worse and worse. Two weeks before his muscle biopsy I took Atty into the clinic because he was getting worse again and they ended up telling me I should try another medicine (on top of the three he was already taking). After a long discussion I told them I would try it if that is what they were suggesting but that I knew it wasn't going to work and wasn't willing to try it for more then one month if it didn't help. Well sure enough they think that the fourth medicine was part of the reason for all the vomiting and at the very least it wasn't helping at all so they took him off of it at our last hospitalization. I am getting frustrated with knowing what will help my child and what won't and not being listened to. Beyond frustrated. I at least want to try it my way, as in doing the diet, and if it doesn't work it's better then all this medicine that isn't working and has so many horrible side effects. He will still be on the medicine he is on while starting the diet. If the diet does work, and you have to give it at least three months, then they will slowly go down on two of his meds, but I think he will probably stay on the Lamictal. For some time anyways. Some kids can get off all meds on the diet, some can't. I'm not sure if Atty would be able to or not. But I would love for him to be medicine free and seizure free if he could. That would be amazing and it makes it worth all the stress that I know the diet is going to bring, at least at first. It's not easy, I know that. In fact I'm scared, but so ready to try it. So very ready. So that's how things stand now. We are home, he's still not walking or even sitting up really. He's barely eating, and it's a constant struggle to get him to drink enough. I am hoping he won't get worse then this before we get a chance to start the diet because he needs to be as healthy as possible for that. I am meeting with a dietitian on Tuesday and I've been told she might put him on a modified Atkins diet for now. That's also been show to really help some kids. I don't think it will be enough for Atty, but I have a feeling it will help...I hope.


Lisa said...

Hey girl...
when you have time, (ha, not trying to be funny here) tell us more about this Ketogenic (is that right?) diet. I've never heard of it. Keep your head up....

Kat said...

I just looked up the Ketogenic diet online so that I knew what you were talking about and I think you are right on the money. Mommy instincts are VERY strong and I just wish the big heads (doctors) would get OVER themselves enough to listen to parents.

I can't tell you enough how much I admire and respect you. You are such a warrior for your children. You absolutely rock!

Is there any way that you could just start him on the diet yourself? I mean, why must you wait? It seems crazy to me. It would be driving me nuts. I think you have been more than patient with the doctors. It is their turn to listen to you. After all, Atty is YOUR child, not theirs. You should be able to have a (BIG!) say in what is going on.

I don't know how you do it. You amaze me. Well done!

Prayers for Atty. Prayers for you. And prayers for the rest of your family too!!!