Although we've discussed the process in depth several times (with the neuro and the GI), we've elected not to do it. And yes, I have several Angelman families locally who've had great success with it, and gone over pros and cons with them as well.
The main problem with her being on it is her other diagnosis of renal acidosis. The ketogenic diet makes a bad condition even worse.
The other issue is her mobility. It would be perfect for her under 2 circumstances: 1) she weren't developmentally disabled and could exercise her own willpower to rationalize sticking to the diet for her own welfare; or 2) she was confined to a wheelchair and unable to procure food on her own.
This is my kid who gets up in the middle of the night (not too frequently, but probably 1-2x in a 14 day period) to snack. I've had kiddie locks on the cabinets but she's been smart enough to cut them off or figure out how to remove the other types. I guess that's a good thing?
From what I know from other family input is that it only works effectively if you stick to the diet 100% and no variations. Otherwise, it's a touch and go thing.
The good news is that the zonegran she's on right now takes care of the lion's share of the seizures, and we were happy to increase the dose, but the nephrologist was the one who had the complete cow about that. She may not get a choice at this point.
Then I can continue to beat the horse named D16 about increasing her fluid intake. Such fun.
Anyhoo, that's what I know on the subject?
Thanks- Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
