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Old 08-07-2006, 08:07 PM
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Default PWS, so confused

Hello, my name is Lee. I have a beautiful 17 month old grandson. He was born with a large PWS. It covers the entire area from sternum to spine on his right side. It does change color with his moods. They did a cranial scan at birth and I had a abdominal scan done at 2 weeks and they said they were fine. Of course the Doctors hit on all the fine points ie...could happens. He did have farsighted problems in right eye which seems to come and go with exams. But what about the mental? He is having these fits where he will be playing and stop, stand up and makes his whole body rigid, clenching his fist and teeth then shakes like he is tensing every muscle in his body. First thought was seizure but he goes straight back to playing like nothing happened. He is also starting to have anger fits. He hits himself and others violently. He is doing this to hurt and will do it repeatedly till we go hold him to stop him. Is this a sign of something or just a spoiled baby? The closest vascular birthmark specialist is 500 miles away from what I can find. Sorry so long but confused and getting frustrated.

Thank You

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Old 08-10-2006, 07:38 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95

At this point, I would bring it up to his pediatrician and see if he/she has some type of answer for the behavior. If you have a way to video tape the incidents...even better. That way the doctor can see where your concern is and recommend any course of action.

Seizures present in so many different ways, it's hard to say if that's what this is...or if it's just one of those things that your grandson has taken a liking to doing. And seizures definitely can be something that involves just going right back to playing after the incident. Can you talk to him during the activity? Does he respond?
The pediatrician or family doctor is your best bet.


Julie H
Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
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Old 10-06-2006, 03:01 PM
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My son was born with a PWS on 80% of the left side of the face. At first they told me not to worry it would fade. It was blue at birth and did fade to a reddish pink by 6 months. He was the fussiest baby I ever did see. Nurse was glad to see him leave the hospital at age 2 days because cried from the time he was born and never stoped. I am in early childhood, the oldest of 5 children and at the time a mother of a 5 year old. I took him to the doctor at 8 weeks until 2 years about every week to week and a half to find out why he was crying all the time never sleeping. They would tell me that I was a young mother and just did not know how to handle him. At age 2 he lost all his speach and went from completely potty trained at age 18 mon. to not at all at age 2 1/2. Long story short he was finally dignosed with DSI (Dysfuntianl Sensory Interrgration) and this sound just like what you are describing. My son would tense up like that and his eyes would role back in his head and for no reason. No that he is 5 yr. and very mature for his age he is able to tell us this is because he loved the sensation of the tenseness. After 3 years of Physicall and Occupational therapy he is able to control it for the most part and he is in a main stream class at school, which is unheard of with these children. Catching it young is the best solution and he is living proof. So I suggest researching DSI and talk to your doctor about and evaluation with a child develpment and behavior specialist. So the answer to your question it is not mental it is nerve problems.
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