Improvement Continues

Well, we continue to improve on an almost daily basis and it is exciting to see!  The diet is going better - he is eating every day and tonight even had eggs for dinner (he was refusing them before)!  This felt like a huge milestone for us.  We also discovered that he likes Keto chocolate cupcakes - whoo hoo! 

Cole had his B-day party this past Saturday at our house and the kids were going to have chocolate cupcakes so I found a keto recipe so Joshua could have one too.  It turned out he loved it so it has become a staple in our routine.  Chip and I spent about 3 hours on Sunday morning making food for the week and the cupcakes were a big part.  I think it took us about an hour and 1/2 to make 8 cupcakes, but it is so worth it when I see him smile.  He did really well at the B-day party (minus one melt down) which eased my mind as I was very nervous.  The other kids had pizza, but Joshua had a hot dog (said he did not want the keto pizza I offered) and seemed fine with it.  He was excited he got a cupcake, but his meltdown came when he didn't get the frosting the other kids got.  I tried to pass off the whip cream as frosting, but he wasn't having it.  After his temper tantrum he calmed down and ate the cupcake.  Now, he has one every day!  Big hurdle was overcome this week (at least for me) in knowing that he can survive a B-day party. 

The other big hurdle we got over this week was him going to daycare.  I was a nervous wreck about him taking his special food.  I wondered if he would get upset when he saw he had something different, or if the kids would ask him questions or if he would try to take something he can't eat - I had so many concerns.  But, he did amazing!  He only tried to grab for one thing and that was yogurt and his teachers caught him and explained why he could not have it and they said he was fine.  His teachers said he did not seem to be upset by having different food and the other kids were fine once it was explained why Joshua was having different food.  What a relief!!!  He went to daycare Monday and Tuesday and did really well both days.  Another great accomplishment this week!  He will go back to daycare on Friday - he only goes 3 half days now. 

His daytime seizures continue to stay away - we have not seen any.  His sleeping seizures still persist, but are still decreasing.  They seem to be more on some nights than others so I don't have a totally reliable number yet, but last night he had 1.  I cannot believe it!!!!  1 seizure!  Whoo Hooo!  If I was not witnessing all of this myself I would not believe it - truly amazing!  That gives me all the motivation I need to keep going with the diet.  I can see my kid coming back to me more and more every day - something that brings extreme happy tears to this Mama's eyes! 

We are still having troubles with the potty - he either seems to be constipated or having diarrhea so we are trying to find the right amount of MiraLax to give him as it seems we are at one extreme or the other.  But, small price to pay.  His stomach may be more settled now as he is adjusting to the diet as he is not vomiting anymore.  Hopefully we are past that part. 

Friday is our IEP meeting with his teachers and staff at his new school.  We are excited to meet his teacher and see his classroom.  I think he is even getting excited which is great because when I first told him he was going to a new school he cried and said he wanted his old school.  I know he will miss his teachers and friends at daycare (as will I - we have been there since Cole was a baby), but it is the right change.  I know he will adjust to the change and hopefully we will be able to get him back on track developmentally and academically.  I have sent his teacher some IEP goals, but working on more and the LONG questionnaire I have to fill out for the school (I am so tired of paper work!). 

I think that wraps up our last week, but I will leave you with a new article that came out today that talks about how doctors might now be very close to knowing how the ketogenic diet stops seizures. Research is so important - please donate to the walk if you haven't yet and help me spread the word.

http://abcnews.go.com/blogs/health/2012/05/23/epilepsy-miracle-diet-prevents-seizures-scientists-may-know-why/

P.S.  Fact for You:  When you have a child on keto or MAD you have to consider the hidden carbs/sugar in everything.  Case in point - I went to get Joshua's 2nd chicken pox shot on Monday and it dawned on me right before she gave it to him to ask what the ingredients were and sure enough - sucrose.  UGH!  I sat there and wondered if I should give it to him and see or try to get my Dr. to write a note that he can't have it, but risk not being allowed into preschool, etc., etc.  I finally decided to go ahead and give it to him and awhile later I checked his ketones and they were indeed lower (not gone, but lower).  I worried about him having more seizures that evening, but luckily it must not have been enough to affect him negatively.  It is exhausting thinking about all these things as even non-food products have carbohydrates that can be absorbed through the skin and knock him out of ketosis - toothpaste, soap, shampoo, sunscreen, lotion, etc.  I have to examine everything.  I am learning a lot!