Saturday, October 23, 2010

Changing the Ratio

So I had a bit of a scare with Evan's ketones yesterday. They dropped all the way down to a 2.9!!!! 2.9??? with no explaination as to why. Everyone who was with him had said he did not get a hold of anything he wasn't suppose to, so the reason for the drop is just unknown and it bothers me!!!

I decided to skip his lunch yesterday with the suggestion from Deb Snyder (the auther of the book keto kid..thank God for him bringing her into my life because she was the first to get back to me with what I should do..Evan's keto team took longer to get back to me..ughhhh). The skipping of his meal was a bit stressful as I had to listen to him cry that he was "hung-a-ree" but I just kept trying to keep him busy until it was time for him to go down for a nap. While he was napping, the nurse got back to me and his nuero decided to up his ratio from a 3.5:1 to a 4:1..hopefully we can get him into a stronger ketosis. He did have 2 seizures this week, one on sunday morning and again on thursday. He does better in the 5s and 6s and he has been in the 4s mostly other than when he dropped drastically yesterday.

On a seperate note, I have been reaching out more to the other mothers on the keto group and even started adding some of them to facebook. I have been on a kick to help raise awareness of epilepsy. People seriously do not understand how much of an impact this disability has on a whole family PLUS what it does to the individual that has it. Epilepsy has turned our whole world upside down and it has also been a roller coaster of emotions. I am fighting for Evan 100% and I am determined to get him to be seizure free. I know we can get there. We have already had periods of up to 3-4 weeks of seeing no seizures and I am praying to get back to that.

Evan is so bright and I know a lot of his frustrations and behaviors stem from him not exactly being able to verbalize everything. He is getting there slowly, but still needs improvement and help to get there along the way. Still waiting for the scheduling department to call me to get him started on speech therapy. I think I am just going to call them on Monday to see what is going on.

Thursday, October 14, 2010

2 Months on Diet

I haven't writtn much lately about Evan and the diet..We have just had so much craziness going on in our family. September was a horrible month!!! My husband's grandmother passed away and then 2 weeks later his aunt passed away as well. We did take Evan to the funeral home for his grandmother's viewing. It was an all day thing, 1-9 pm. Evan did fantastic!! There was lots of food around, so we did have to watch him closely, but overall he did no whining or crying. The actual wake the next day was a bit of a challenge, as it was the first time we have stepped foot into a restraunt since starting the diet. He was perfectly fine and was hapy just eating his chicken, cream, veggies, and butter. We did take along his snack with us as well, and I do have to say that eating out this time was a "success".

We did decide not to take EVan with us to the funeral home for my husband's aunt's funeral, but we did pick him  up so we could all eat as a family. This time the dinner was a disaster. He screamed, cried, and whined the whole time. I felt so guilty and angry at the same time. Guilty because my little boy has always been such a fabulous eater and now I can not just give him anything he wants. Angry because I am so fed up with this freaking epilepsy. Angry that my little boy was "chosen" to have to go through all this crap. It is so stressful to have to be on this diet, but I know in the end it is all going to be worth it.

Speaking of anger, I have been so angry lately. Like I have already said, I am so upset that my little boy has had to go through all of this. I am angry because only a select few releatives have really reached out to understand and have gone out of their way to try and make our lives easier because they know we are stressed out. My mother-in-law has done everything she possibly can to help us. Read the books, removed things out of view and reach..and most of all continuously tries to understand all of this. She watches him while I go to work, so it is nice not to have to "worry" that she is going to sneak something to him that he can not have. My husband's side of the family is always calling and asking how everything is going with Evan..at least once a week they want some kind of update. Sadly, my side of the family only calls me when they want to share some sort of news of their own and then they quickly ask.."oh, how is evan." It is really upsetting to know that I really don't have much family support. Not one person on my side has asked what all this diet entails and have not showed one ounce of support. That is just how I feel and I can't help it and it really has been bugging me a lot lately.

On a lighter note, Evan really is doing pretty good on the diet. Since starting he has had a total of 7 seizures, but still an improvement. I can name almost every reason he has had a seizure since this diet. His first few seizures appeared because of the keppra wean...a few of them because he got a hold of some sugary drinks he wasn't suppose to have, and this last one I think due to a diet pop that had splenda in it instead of aspartame. Splenda has sucrolose in it and I think that may have caused is seizure. I quit giving him that drink, so hopefully we wont see any more seizures.

Evan's speech is still not very good, but is slightly improving. He had an evaluation and qualified for speech therapy, so we are just waiting now for the scheduling department to call us and get things started. In December, he has an appointment with the Child Developmental Unit at children's hospital. It is a 2 to 3 hour appointment to see where they think he is developmentally and to see what else we can do with his impulsive behavior. We shall see what they have to say about all of that. I have a feeling this is going to be a very interesting appointment :)