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anyone know what could be the problem? please.

Manda - posted on 04/25/2011 ( 3 moms have responded )




my daughter is 3 in june, she cant walk cant talk, has hypotonia, sleep is really bad, been given melatonin but that doesn't work one bit. she drools, bites everything she can. her ears are really soft, u can double fold them and are low set, she has no bridge to her nose.her eyes are a little wide spaced. she don't really have tears when she cries. her teeth are really spaced out. she cant feed herself with a spoon but can finger food, cant drink from beaker or cup, only a baby bottle. she chews abit but would rather just swallow which makes her choke. cant un/dress herself, cant go on potty. she doesn't understand anything, so its hard to teach her right from wrong, she hardly feels pain. she shakes her head as we say no really fast from side to side, she tightens her hands and arms an legs to straight alot. she makes this crow like sound or says something like EEEEEEEEEEE really loud alot, and has really bad temper tantrums (we think she is frustrated because we don't understand what she wants) but she throws things hits out, bites herself bites others, kicks out. she doesn't like it when there's alot of noise or if people around are arguing, laughing loud etc. but when shes happy she is happy, big smiles on her face, hugs kisses the lot.she loves her books, well turning the pages alot and her press down top toy and music, and will stop doing anything if her favorite song kings of leon sex on fire comes on??? she has a bad developmental delay.

she has been tested for cerebral palsy and angleman syndrome.

i was wondering if any of this sounds familiar to anyone or if you know what it could be? im looking into everything myself as we have to wait 6 months every time to see her doctor.

please help. thanks. sorry for the essay.


Jeannine - posted on 08/13/2011




First, if you haven't already please take your child to a pediatric hospital. Second, have your dr order a chromosome array. I was thinking maybe

a different genetic problem on chromosome 15 (same as angleman) but an array will help find a genetic problem. Good luck!


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Natasha - posted on 05/07/2012




Hi Manda, this sounds very like William's Syndrome - it's very rare but there's help out there. The reason I think this is because of the way you described your daughters physical appearance and her delayed development - these are very typical of William's Syndrome but it often goes undiagnosed as many doctors are unfamiliar with it because of its rarity. Good luck, let me know how it goes.

Natasha - posted on 10/28/2011




sounds a lot like my son. Check out developmental coordination disorder(DCD) and sensory integration disorder - especially the low tone part. (there is a book called the parents guide to everything sensory integration that is awesome with its stuff on low tone/hypotonic kids. Try having an OT do a sensory integration profile! you do most of the work answering questions about your child

also try googling dyspraxia- its a motor plannin issue that drive my son and us crazy at times, its under the DCD umbrella like sensory integration.

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