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heterotopic periventricular grey matter
Thu, 10/14/2010 - 12:17Comments
Re: heterotopic periventricular grey matter
Submitted by emer on Fri, 2011-01-07 - 18:52
My 15month has Periventricular Heterotopia. We found this out when she was 11months old. With Periventricular heterotopia it is a condition in which nerve cells do not migrate properly during the early development of the fetal brain. My Daughter has the less commonly condition of a more severe brain malformations,- small head size, developmental delays, and extremely flexible joints. My question is if there is any other Mum's out there that might have a little one with this same condition. At the moment my little girl is sitting up, clapping her hands, doing pretty much what a 10month would be doing. We had a lot of trouble with her feeding from day one, but we have gotten that under control now. We are curently haveing some Genetic Testing done at the moment. She has had the best care all thanks to the Randwick Children Hostipal. We have Phyo, and OT every two weeks, and I feel this is helping.
She is very bright, and loves to read book. I getting very worried that she might never crawl or walk and the older she gets I finding it really upsetting. But apart from all this she is the happyest little one, sleeps really well. I hope some one can help me.
Emer
My 15month has Periventricular Heterotopia. We found this out when she was 11months old. With Periventricular heterotopia it is a condition in which nerve cells do not migrate properly during the early development of the fetal brain. My Daughter has the less commonly condition of a more severe brain malformations,- small head size, developmental delays, and extremely flexible joints. My question is if there is any other Mum's out there that might have a little one with this same condition. At the moment my little girl is sitting up, clapping her hands, doing pretty much what a 10month would be doing. We had a lot of trouble with her feeding from day one, but we have gotten that under control now. We are curently haveing some Genetic Testing done at the moment. She has had the best care all thanks to the Randwick Children Hostipal. We have Phyo, and OT every two weeks, and I feel this is helping.
She is very bright, and loves to read book. I getting very worried that she might never crawl or walk and the older she gets I finding it really upsetting. But apart from all this she is the happyest little one, sleeps really well. I hope some one can help me.
Emer
Re: heterotopic periventricular grey matter
Submitted by vangroovymom on Wed, 2012-07-11 - 23:14
Hi, I moderate an online worldwide group of families affected by perieventricular heterotopia. We currently have more than 80 families supporting each other. The group is comprised of adults with heterotopia and parents of children with heterotopia, all supporting each other.
The group is on Facebook. You can find it by searching x-linked periventricular nodular heterotopia (not all members have the x-link form but my family does, or you can get more info at www.pvnhsupport.com
YolaineHi, I moderate an online worldwide group of families affected by perieventricular heterotopia. We currently have more than 80 families supporting each other. The group is comprised of adults with heterotopia and parents of children with heterotopia, all supporting each other.
The group is on Facebook. You can find it by searching x-linked periventricular nodular heterotopia (not all members have the x-link form but my family does, or you can get more info at www.pvnhsupport.com
Yolaine