Carter had a good weekend, but had another seizure at the end of his school day yesterday and another later in the evening. I gave him the lorezapam ,as his Dr and I discussed last week. Hasn't had another seizure but his arm is doing the shaking thing it randomly has been doing lately, which makes me nervous because he usually does it around the time he has the seizures. I am really struggling to keep it together today. It's really hard to watch my 8 year old son go from being a normal kid to one who is struggling to learn in school and remember simple things like what he named his goldfish. And thats just the icing, watching him have a seizure is like having someone rip my heart out, stomp on it and throw it back in. You would think it would get easier the more he has, wrong, it gets worse because that means he is not improving. This has been going on for what feels like forever.All morning I have been crying and wondering, why is he not getting better, why is the medicine not working. But then I feel guilty for doing so because I know there are kids out there that have a more intense seizure disorder than Carter and I know his situation could be worse. But to me, this is worse, this is life changing. My son is regressing and I can't stop it. After every seizure, he doesn't talk, if he tries to, the words come out slow and you can barely understand him. Everytime I wonder if this will be the time that he doesn't get his speech back. He is in a downward spiral with this stupid disease and I fear that if we don't stop it soon, we will lose him forever, or at least lose the Carter we all know. I know that I am a pessimist to the core, I don't think that any one of you reading this would disagree with that, but how in the heck am I supposed to think positively at this point? I have tried this whole time to stay calm, have faith in the Dr's and think rationally. I am mentally and physically exhausted , I am having nightmares and horrific visions during the day, the other day I spaced out while tanning ( yes I know, slap on the wrist ) and pretty much envisioned the aftermath of Carter's death. I'm not saying that I think he is going to die but that is how "rational" my thinking is these days. Hmmm..... sorry I somehow have made this post about me... oh dear. It did feel good to get that out though.
Thanks for listening...
Nicole
love you girlie! hang in there! xoxo
ReplyDeleteNicole-
ReplyDeleteSending prayers your way.
Brittany
Hang in there Nicole! You are right it could be worse, but it isn't. God only gives you what you can handle, and he knows you can handle this. He also knows why Carter is going through this, we may never know, but he does, and will guide everyone who is affected by this.
ReplyDeleteLove to you and your whole family,
Angela
I know of a diet that is well documented as a cure for seizures etc, just google ketogenic diet. It has been around a long time and was first.developed at johns hopkins medical center, though there are many medical centers that do it now. It is difficult to implement and for.this reason physicians do not usually suggest it. There is a movie based on it called First do no harm with meryl streep in it, its a few yrs old. Also you can find blogs about it and some youtube videos on it. There is one young man who addressed the national symposeum (sp?) on nutrition, very eloquent, i cant remember his name, if i find it i will come comment you a link to his video.
ReplyDeleteNicole here is a link with a bunch of the videos.....the first is an introduction to the ketogenic diet and then the diet on the news, and the third is Charlie Abrams speech. Its all quite encouraging, and i hope you will check it out. Here is the link...http://www.charliefoundation.org/
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