Lot's of people contact me and ask questions about how I handle things like school and diet and family and parenting and doctors and ST, OT, PT, sensory integration.... I love that. Really, I do! Please always feel free to ask! I just want to be sure that everyone knows who is answering. I am a special education teacher who has taken a 6 year course in Ayden Jane. Along the way I have learned so many things regarding early intervention, special needs parenting, food, endocrinology, immunology, supplements, genetics, PT, ST, OT... the list goes on. I do, however, know all of these things as they apply to Ayden Jane...
In regards to food we have found what works very, very well for Ayden Jane. I do think there are parts of what we do with Ayden Jane's diet that apply fairly well across the board. I think for young children it is good to not fear the fat. Their brains need it to grow. I think that choosing foods that are nutrient dense is a good idea.
Ayden Jane's body has proven to us that grains just do not work for her. I would go so far as to say that a lot of grains are not necessary for most kids, but I don't know that all kids need to go to the zero grain point. Sugar? Well, lets be honest, no one needs sugar.
As for how to feed your very own child with Prader Willi Syndrome? That's between you and your medical professionals. It is a balance. As the parent you have to make decisions about food many times a day. I honestly, did not have professional help with Ayden Jane. I just didn't have access. I did the best I could and most importantly, things that I heard/read about from other parents I ran by my pediatrician. He did/does not claim to know PWS, but he was fine with his role of making sure I was not doing anything that could harm her. He often thought I was a bit crazy and did not expect things to help (like b12) but was good with monitoring her and making sure she was safe.
Whether you have a PWS knowledgeable folks guiding you child's care or whether you are a bit on your own, find someone to walk the journey with you who can keep your child safe. It's okay if they think your crazy:)
I borrowed this picture from Vanderbilt Kennedy Center's Facebook page. I think it's a great reminder that we are all in this together and if your Mommy gut says something is a good idea, run it by a professional so you can try it safely.
(and seriously, feel free to ask me or other parents questions, just remember we are, well, parents)