Dear Diane,
Thank you for this description!
Your child's behavior illustrates perfectly the distinction between "ravenously hungry" and lack of satiety. There is other good evidence that the children (and adults) are not hungry but once they encounter food there is little to stop their eating (satiety signals in the rest of us stop our intake within minutes of starting a meal but are weak, delayed and shortlived in PWS) This is important, since it is likely that the pleasure of eating drives the food seeking rather than hunger. I think it is an inportant insight since parents are led to believe that the children are suffering with hunger all the time. This is a terrible paradigm and almost certainly false.
Linda M. Gourash, MD
In a message dated 9/14/2006 5:43:38 PM Eastern Daylight Time, rodise6@... writes:
Kerry,
Hello! We met three years ago when Reagan was first born. I have had the priveledge of meeting J.R., he is a very sweet boy.
Some of the things that you mentioned about J.R. are simillar to Reagan.
His speech is there but he has mild cognitive play deficits, and severe articualtion and oral motor deficits. He also has some of the behaviors that you mentioned self-stimming, will not make eye contact, and gets "stuck on a subject" or often reverts back to a particular subject if he feels he is being challenged. He also has difficulty holding his attention to the task at hand if there are other distractions such as loud noises, music playing, other kids nearby. He also has alot of sensory issues. We work on all these things daily. Since he has started preschool and will have additional OT, PT and ST during class.
I don't want to try to "Diagnose" him, but I see a little bit of SPD, traits of OCD, traits of Autism, traits of ADD...I don't know which one to address first!
We have been potty training since Jan -- now that he is in preschool he is modeling his peers and doing much better, I think that it took seeing other kids on a daily basis using the potty for him to get it.
As far as food goes... He never asks to eat, I have to ask him to come to his high chair a million times. He often says "no I don't want to eat" But once he is in his chair he will eat all of what is put in front of him. So I ask myself...Is the problem the actual transition from play to food or is he simply not hungry?
Diane Seely