Tuesday, June 21, 2011

Bad Day

Well, we had a good run. We made it 3 week and 2 days. You get to the point where you forget the seizures. You forget what they look like, you forget the fear and anxiety that comes with watching them, and you forget the effect they have. You're pulled straight back into reality when you see your child hit the floor. We've been extremely successful at covering up his symptoms with food, but at the end of the day, Ethan is a child with a severe form of childhood epilepsy.

Ethan has been doing amazing on the diet. We've found a few meals he really loves, and a handful he tolerates pretty well. He's been learning so much more, an more or less acting like a completely and normal 4 year old little boy, it's been AMAZING!!! Yesterday, right after I had gotten off the phone with his doctor trying to get test results, I saw Jet run toward Ethan, and Ethan stagger backward and fall to the ground. I went to position him as we went into a full tonic clonic. Jet did not alert to this seizure, this was the first one he has witnesses. Upon seeing him fall, he ran to him and started licking his face and looking very concerned. He stayed close pacing back and forth until it finally passed, and once I laid Ethan down on the couch to sleep he curled up with him and it was very obvious that he knows this is his job! He's an amazing dog, so calm and loving and smarter than you could imagine! We're so proud of hm!
 Postictal after his seizure but never out of sight of Jet
Ethan rested, and napped and once he woke up he was pretty much back to normal. We really still have to expect seizures, even if they shake us up. He's gone from seizing or sleeping all day and night to having one large seizure every 3-4 weeks. That's an amazing improvement! I'm not sure why he's only having tonic clonics, and no other type, but I know this is much easier on his brain and body. So we assumed everything was back to normal.

Ethan hates drinking his cream, but really likes his other foods so the way we do meals is to literally pour the cream in his mouth before he eats. It gets it done quickly and we know he's getting every drop. I was giving him his cream before he ate dinner and there it was, that eye roll and loss of muscle tone that signals something bad is about to happen. Luckily I was right there to catch him and ease him to the floor and onto his side. The seizure did pass after about 4 minutes (at least they DO stop these days!) but unlike what is normal for a seizure, he couldn't seem to fall asleep. He cried and cried for nearly 40 minutes. I can only imagine what was going on in his brain. He couldn't express what was wrong, and you could tell he was in pain. I called his doctor, and they had us give him an extra klonapin which I assume finally made him pass out. He slept tucked between Mike and I last night, and of course I was up every few minutes to make sure he was breathing. I'm terrified of SUDEP. It's on my mind every day. Think how you feel with SIDS when your baby is a newborn, I live that with a 4 year old every day, only with a much higher chance of it happening:(

Today is a new day, and we'll see where we go next. Hopefully we have another great stretch out of him. I remember when we started the diet we were saying if he has a 30% decrease in seizures it would be well WELL worth it. He's gone from over 1500 seizures a month to 1 or 2. Those are results we couldn't have even imagined at the beginning of all this. So we'll take a deep breath, and continue with life, because what else can you do?