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A Forum For Those Touched By Pallister-Killian Syndrome
Hi again, Anyone know some more about the seizures? Andrew had little jumps or startles when he was about 18 mos or so. He had a video eeg and was put on phenobarb. After about a year and a half or... Continue
Started by kim hudson. Last reply by kim hudson 6 hours ago.
We know there was a discussion a month or so ago, started by Dawn but we were hoping for some more info and updates based on what just happened to Jake . . . Jake too has had severe popping in and... Continue
Started by the zanes. Last reply by kim hudson May 10.
Do any of you have a special needs trust for your child? We're thinking about it, but I have so many questions! Can the money be put in and taken out the entire life of the child or only after he/... Continue
When did your child start making vocalization and/or cooing?..Kennedy has been making lots of noises latetly; especially when she is upset.She makes vocalizations when she is not mad as well. They ... Continue
Started by Luis and Spesh. Last reply by Gretchen Apr 24.
I want to share a picture of a x-ray of Kelsey's spine. just had done yesterday at the doctors office. We knew she had truck problems and she was always slouching when she could. Be after seeing th... Continue
Started by Cammie Gray. Last reply by Camilla Apr 19.
We are just wondering how many other of our PKS kids have been diagnosed with Polymicrogyria (PMG), and abnormality of the brain. Alexa was diagnosed with PMG at about 5 months, over a year before ... Continue
Started by Barclay family. Last reply by Sally-Anne Wilkinson Apr 15.
hi all im new so not sure how this works yet! im looking for people yo meet up with in the uk as i havent found anyone yet! if anyone is from uk can u let me no please thanks danielle morgans mum x
Started by danielle ralph. Last reply by Sylvie Apr 13.
Hi to all of you I'm Julia, mum to Matthew (7) PKS and Daniel (3) NF1. Like many UK families the first support group I was referred to on diagnosis was Unique (www.rarechromo. org). Unique is havn... Continue
Started by Julia Bainbridge. Last reply by Sally-Anne Wilkinson Apr 11.
I know all kids are different, but I'm curious since Simon isn't eating as well either. He weighs 25 lbs. breakfast: 6 oz container of yogurt thickened with baby cereal. Usually finishes 3/4-all.... Continue
Tagged: nutrition, eating, food
Started by Gretchen. Last reply by Cammie Gray Apr 10.
Has anyone had trouble with hips popping in and out of the socket? (Sp?) Surgery has been recommended for Aidan and I am not feeling like it is the best decision right now. We are going for a secon... Continue
Started by Aidan Bergquist. Last reply by Jessica Apr 4.
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