Cade has always been on a low carb diet. With PWS the body doesn't process carbs the correct way, therefore they don't serve much a purpose in Cade. They make him very sluggish, tired, and craving more food. There are studies happening right now going into detail about how the Ketogenic diet, and Atkins are beneficial in those with PWS and could be a great option.
It was never about a number of calories for us. It was never OK, 1000 calories/ day
and no matter how you get them just can't consume more. That just doesn' t sum things up in PWS. It is interesting to look at the families who have been doing these high fat/protein-low carb diets and how incredibly well their children look and behave.
Diet is so important in any of us, what we eat affects the way we behave, look, and feel as well.
I received a link to a website www.charliefoundation.org from another PWS family. If you can, visit the site and watch the video on the homepage. It is amazing.
So, what else are these Keto and Atkins diet good for?
Yep, seizures. It seems to be an option for those that have tried anti-seizure meds with no success and then go on to trying one of these diets and usually it proves to work. It is sometimes a second option for those with Epilepsy because it is restricting and hard for a child to follow.
BUT, with PWS we already deal with plenty restrictions and for us it is more like a first option since we already were somewhat following it. I can surely see how a typical child would not want to jump to such a restricted diet. With PWS and for us it is truly a win-win.
Parents will tell you how well their child's brain functions on it. So, we have started the modified Atkins with Cade. Very, very similar to what he already was doing...just no tastes of this or bites of that. No slipping and I am hoping it helps his little brain stay healthy. If he has another seizure, well then he does...but I do think this diet will play a big part in severity, and how many more are to come.
Cade's EEG is schedule in Baton Rouge for the 14th. Farther than what I would like, but that is what they could do. It will be a sleep deprived EEG and may or may not show abnormal activity going on. It is pretty common for it to even be normal.
I have talked with some new PWS families over the weekend and they have shared their experiences with me. I was able to hunt some families down that have younger children with seizure history. Interesting. No two have the same story, but a lot of similarities.
I am so thankful to have Facebook and the Internet to bring me close to those who know my child as well as I do, and have done it before.
I will continue to update often as we continue to find some sort of trigger for the seizure activity.
We've been following this sort of diet for Dean. I hate being so strict, but I just don't really want him to know anything else, especially if we need to get stricter for weight or other reasons. Hope this helps out with seizures for Cade, too. Hugs, mama. You're doing great.
ReplyDeleteAyden Jane is awesome on this diet. Not ketogenic, but definitely low carb. It was hard when she was little and honestly, I didn't get the hang of it until I made myself do it. Then I was forced to find options and new ideas. (of course it would probably have been easier to just do some research!) The rest of our family does not eat this way and AJ has learned to be low carb in a society that is not. Well, so far anyway...
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