noahsketomom
DIS Veteran
- Joined
- Jan 19, 2010
I am brand new to this forum and I am so grateful for it! I have learned so much in the few hours I have spent reading people's trip reports! THANK YOU!!
A Brief Intro -- My son Noah will most likely be granted his Disney Wish for sometime this Spring. We have met with our wish volunteers and are waiting for a date. We most likely will be staying at Give Kids the World.
Noah is 4 and has Doose syndrome, or myoclonic astatic epilepsy. The treatment that has proven most effective, in addition to medication, is the ketogenic diet. Is there anybody out there that has done this trip with a keto kid? I am currently freaking out about all the planning involved with his meals. In a nutshell, every gram that goes in his mouth must be measured. So other than water, he can't have any meals out. I will most likely have to make all his food and transport it to the parks and whatnot. The thing that I worry about is him seeing something that his siblings can have that he cannot. We also have a DS (9), DD (7), and a DD (3). It's inevitable that they won't get excited about something edible they see, I know, but I just want the trip to be focused on FUN, not FOOD!! Any tips on this, or if anybody has done this on the ketogenic diet, I'd love to hear what you have to say!
More to come as details emerge!!
Thanks for sharing all your stories --- they encourage me so much!!!
Best,
Beth
mom to John (9), Abby (7), Noah (4 - Wish kid, keto kid, doose kid), and Ella (3)
A Brief Intro -- My son Noah will most likely be granted his Disney Wish for sometime this Spring. We have met with our wish volunteers and are waiting for a date. We most likely will be staying at Give Kids the World.
Noah is 4 and has Doose syndrome, or myoclonic astatic epilepsy. The treatment that has proven most effective, in addition to medication, is the ketogenic diet. Is there anybody out there that has done this trip with a keto kid? I am currently freaking out about all the planning involved with his meals. In a nutshell, every gram that goes in his mouth must be measured. So other than water, he can't have any meals out. I will most likely have to make all his food and transport it to the parks and whatnot. The thing that I worry about is him seeing something that his siblings can have that he cannot. We also have a DS (9), DD (7), and a DD (3). It's inevitable that they won't get excited about something edible they see, I know, but I just want the trip to be focused on FUN, not FOOD!! Any tips on this, or if anybody has done this on the ketogenic diet, I'd love to hear what you have to say!
More to come as details emerge!!
Thanks for sharing all your stories --- they encourage me so much!!!
Best,
Beth
mom to John (9), Abby (7), Noah (4 - Wish kid, keto kid, doose kid), and Ella (3)
