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Bilateral Perisylvian Polymicrogyria

(3 Posts)
LadyKooKoo Sat 30-Nov-13 21:02:09

Hi, my daughter is two and a half and was diagnosed after an mri last December. She has been walking for about three months now and is really trying to run at the moment. She also has sensorineural hearing loss so wears hearing aids but understands pretty much most of what we say. The family and nursery use Makaton with her and she does a couple of signs back too but we have only been doing it for about six months so I know it will take time. Her chewing is not great and she is a bit droolly but she can feed herself fine and loves her food. We know that speech would be delayed anyway because of her hearing but do not know what will happen with that as PMG is basically a (frustrating) unknown. Does anyone have a child or know of one who has this and is verbal?

BeeMom Sun 01-Dec-13 00:36:58

I know of BG twins in mainstream school who both have it. The boy is developmentally more severe than the girl, but they both walk, talk, interact, and learn.

The frustrating unknown is so real - Bee has open cleft schizencephaly, and I know children with much "milder" clefts that are more severely impaired, and children with far more severe clefts that are less affected.

It sounds as if your DD has a great advocate in you, and if she has picked up a couple of signs, that is a very encouraging thing, indeed...

loujoshysmum Sat 08-Mar-14 21:49:06

hi ladykookoo
im a mum of an 18 month old son who has polymicrogyria he asnt quiet got the hang of speech yet but he is making alot of sound. we are waiting for the makaton course to start so we can learn to communicate properly in case of the worse case he cant speak. he has alot more physical problems such as his left arm and leg are rather stiff he doesnt use his hand, wears a splint to open an loosin it. his leg is rather stiff and he tends to not bend it at the knee which causes issues. his left side is a bit shorter than the right which could either get worse or stay as it is an grow slightly slower. would be great to speak some more about your experience as i dont know any one in the same boat.

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