Saturday, May 28, 2011

I HATE Seizures

Ethan has been doing amazingly. With the exception of one tiny drop seizure, we haven't seen anything out of him in nearly 3 weeks, it has been amazing! Yesterday I decided to venture out and take the kids to the park. After all, Ethan isn't seizing anymore, he should be able to go to the park like a normal 4 year old. I found a great park a mile from the house where all the play equipment is pretty low. I loaded the kids up in the stroller and walked up there. Ethan was so excited to, "Go play park, and slide on the weeeeee, and do swings!". Taylor doesn't have much park experience because we have been so afraid to take Ethan, so I got them there and pretty much let Ethan go and played closer to the ground with Taylor. It's so wonderful to see him being to free and normal!

We had been there a while and Ethan started gravitating toward a boy on the swings. His name too happened to be Ethan and he was a few years older and Ethan was trying to do all the cool twisty swing tricks he was able to go. I was chatting with the boy's aunt, and she happened to be a nutritionist and we were talking all about Ethan's diet. I told her he has epilepsy but the diet had literally wiped out his seizures, all due to food. I turned my back for two seconds to grab Taylor from Eating more sand, and see started calling for me. The second I turned I saw that terror on Ethan's face and him going into a huge seizure. She caught him as he fell, and I ran to hold him as he started convulsing. My mind started racing, I had no emergency meds to stop this seizure, and I was a mile from home with no car. If I had to call an ambulance I wouldn't be able to go with him because I had Taylor. I was just praying this one would stop on its own,

The other Ethan that he had been playing with asked me what a seizure was. I took a deep breath and tried to stay calm while holding a seizing child and explained to a 7 year old what was going on, and kept him from being scared by assuring him that he was feeling no pain and it was just a little extra electricity in his brain. There happened to be another mom that was helping with the situation who had a child who had grown out of epilepsy and was helping to calm the rest of the kids. The woman who I had been talking with was watching the time for me and giving me updates and was ready to call 911 if he went over the time limit.

Very luckily this one did stop at 3 minutes. Ethan passed out and was completely postictal. I didn't know what I was going to do. I had to walk them the mile home, and no one wants to do that with an unstable child. Well once again this woman came to the rescue. She ran her nephew home and came to pick us up to drive us home. I was terrified because I had no car seat for either child, but I figured it was safer to drive the mile home without them.

We got back to the house and got Ethan laid down on the couch, and Taylor was exhausted from crying the whole time because I was tending to Ethan and not holding her (she has serious attachment issues). I took her up to her crib for a nap and she fell asleep right away. Ethan stayed asleep for 2 solid hours before he woke up with zero memory of the event. His dog was there waiting for him when we got home, and didn't leave his side. Really wish I would have brought him with me, but I thought a dog and the two of them would be too much, I know better for next time.

Ethan has had tonic clonics before, but this one really shook us up because it came so out of the blue. It's not as though it was a small seizure that popped out of no where, this was a BIG one. We're pretty on edge waiting for what will come next.
I also have a delayed HUGE thank you to all the parents and staff at Ethan's preschool that donated to him and for the beautiful photo book as well. I was in tears when I opened it and am so overwhelmed by the support we continue to feel from family, friends, acquaintances, and complete strangers. So thank you, thank you, thank you. I wish I could give you all a hug individually!

Saturday, May 14, 2011

New Life

Life has changed in every way for Ethan and our family since starting the diet. Our life does very much revolve around his food, but it no longer revolves around seizures every 20 minutes. In the last month and a half he has gone from 50 or more seizures a day to less then 10 a week! It's amazing, but true. We had our first keto checkup earlier in the week, and his doctor literally did not recognize him. She was all smiles, and said she wasn't sure she had ever seen him standing up, let alone running around and talking up a storm! So it looks like we're in this diet for the long run because of the amazing benefit. We will talk about weaning meds in about 6 months, and probably another extended EEG around that time too to see if he is still having subclinical seizures.

With this "new" life has come things Ethan hasn't done since this nightmare started. For the first time in 6 months he went to the playground:) He had so much fun! He was running around like a normal little 4 year old. And go figure, he was more sure on his feet than he has ever been. We have never just let him go off and play because he's been so clumsy his whole life. We just never knew why.

When is the last time you saw him this happy?!?
Clumsy no more!

I don't have much to report, which is why I haven't been writing much. He's just amazed us all at how well he's done. He is not the same boy he's been for the last 6 months, and he's been making up for his down time with crazy behavior and not wanting to listen to mom and dad! He'll get over it, we're just happy to have our boy back!

Mr. Jet has been doing amazing as well. He's so smart, and extremely loyal. He learns something new every day, and his list of mastered commands is growing by the second. In 10 minutes today he mastered a new one, "leave it". Even with super tasty treats touching him, he won't touch them!
Good Boy!