Tuesday, January 21, 2014

I really hate Doose syndrome http://doosesyndrome.org or Monoclonic Astatic Epilepsy (MEA). Why couldn't he just have regular toddler or childhood epilepsy? Why Doose?

It really is an emotional roller coaster. Tuesday, January 14, he had a small tonic clonic in the early morning while he was still sleeping. When he woke up that morning, he did not have another noticeable seizure, not any falling asleep jerks, eye flutters, trigger drops or anything until Saturday, January 18 right after falling asleep he had a couple open eye quick jerk things. Then the next night, Sunday, the same thing, a couple jerks. The falling asleep jerks have actually been fairly common for him for months but it was just nice for those 4 days not to see anything. Monday, January 21 he had another tonic clonic in his sleep at 4am. This one was a little worse than the last. 

I'm not really sure what to so next. There are always so many variables. For instance, the stretch that he was seizure free he was still getting over his flu bug and had loose stool. That stopped I think the night that he had the jerks. Could that have something to do with it? If I remember correctly, the same sort of thing happened the last time he had a virus with loose stool. Or maybe he's been drinking too much soda and Powerade Zero. The last couple days his ketones have been all over from small-large. I don't know if the soda is lowering the ketones or just deluding his urine so thy appear small but are really large. It's hard to get him not to drink soda. It's really the one thing that he gets and likes that is a treat that the other kids don't get. 

Maybe we need to increase his ratio again. Butt I don't want to have to do that if it's just the soda. It's funny because he had just as much soda during the 4 days of no seizures. His doctor gave us a tentative plan to first increase ratio which have done already for a week to see if that will take care of his remaining seizures. If that didn't work then she wants to increase his mediation (Keppra) by a half of pill at night because that's when he seems to have the most activity. Right now he takes 3 250mg pills every day. If that didn't do the trick she wants to switch up his meds. altogether.  Ween the Keppra and add another to go along side the diet. I'm not sure of the name though. I know it's nothing I have heard of. 

So, that's where we are at now. We haven't made any changes but I think I'm going to start limiting soda to see if we can't boost his ketones. 

Friday, January 17, 2014

Guess who's 6???

James, our middle boy, turned 6 today, January 14! I asked him a couple questions about himself at bedtime tonight and here are some of his responses:
1. What is your favorite thing to eat? Applebee's Feista Lime Chicken
2. What is your favorite drink? 7up
3. What are some if your favorite things to do? In the summer I like to go outside. I like to swing and ride my bike. I like to run around outside with no shoes on.
4. What did you get for your birthday? Hexbugs and legos, mostly.
5. What are some of your favorite movies? Despicable Me 2 & Bedtime Stories

Happy Birthday James!! We love you more than all of the stars in the sky! :)

Thursday, January 16, 2014

The trip down to the Mayo went great. (Well, except as we got there a woman  fell over and cracked her head open while having a seizure to which Justin helped her until a medical team stepped in. But, that is a whole story of it own. A long one.)

Jonah had some time to play in the playroom while Justin was down in the ER before he had to be hooked up to the EEG monitoring device. 

Justin, Vanessa, Ethan and I all ended up staying the night in Jobah's hospital room. It was quite a tight fit. The hospital is very relaxed there. They pretty much let you do what you want. 
Jonah and Justin's sleeping arragment
Vanessa got the bench bed 
Ethan and I, yes, we slept in the bathroom. Don't worry, it was padded with a pretty thick cot mat. 

The following morning Jonah's primary neurologist came in for the report of the EEG. She told us that the diet has had a significant impact on his seizures. Before he started the ketogentic diet he was having 75+ seizures per day (even though we only would witness 1-10) and now he only had 8-9 the entire 24 hours!! Also, the slowing he had before is now completely gone.  Praise be to God! The only thing we changed was what he ate, his diet. Food and diet alone can do so much. 

Since he is still not 100% seizure free his doctor suggested raising the ratio from 1.5:1 to1.75:1. 

Since we left the hospital a week and a day ago, 6 of 8 of us came down with the stomach flu. Thank goodness we are all better now. 

Jonah has started his new ratio and for the most part tolerating it fine. It's not a huge diffrence although a couple of his meals he used to like he no longer likes because there's just to much mayo or butter. 

This past Tuesday morning in his sleep he had a tonic clonic seizure (Justin was thinking cause he was cold but who knows) but besides that we really haven't noticed any other seizures. Maybe one falling asleep but that would be questionable. So, I would say that today is the second seizure free day in a row!!! I hope and pray this will turn I to many more days of seizure freedom.

Tomorrow morning the big boys and Justin will be leaving us for the weekend for a Pokemon turnament in Missouri. Hopefully, things will go smoothly while I am alone with the littles for 3 days 2 nights.

I have an opportunity to go to Florida and take Vanessa, James and Ethan. Leaving Justin with the Tyler, Shane and Jonah. I'm conflicted wether or not to go because I don't want it to be too much for Justin. And I have a hard time asking people to help out if he were to try to go to work a couple of the days. On the other hand it would be nice for me to get a break and spend some time with Vanessa and James also. So, I don't know.

Ethan at Chuck E Cheese 

Sunday, January 5, 2014

Tomorrow we trek back down to the Mayo to have another 24 EEG, blood tests and a consult with Jonah's doctor and dietitian. 

I'm really anxious to know how his brain, and really his whole body is handling his diet. 

We will update as soon as we find out how things are going and what adjustments need to be made since he is not seizure free, yet.