bilateral perisylvian polymicrogyria -do you have a child with this condition

Nicola - posted on 06/06/2012 ( 4 moms have responded )

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My son Sean was diagnosed at 5months with Infantile Spasms and Bilateral Perisylvian Polymicrogyria,was wondering is there anybody else out there that has a child with this condition?.He has an app with the surgen tommorow to discuss gastronomy feeding tube and possible fundo surgery as he has severe delayed swallow and reflux also he is aspirating with his milk,,he also will be getting either botox or surgery for his drooling problem,so please anyone else out there going through this please talk x

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Jessica - posted on 06/10/2012

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Hi Nicola! I received a Google Alert via email due to your mention of "Bilateral Perisylvian Polymicrogyria." My 9-month-old has this same condition (though he hasn't had Infantile Spasms). He also has a G-tube and Fundo (aka Nissen). He is fed 100% via G-tube and we occasionally give him Robinol for his drooling if it's a bad day and he seems to have trouble swallowing. I would highly recommend you visit a fairly new website that supports families like ours: www.pmgawareness.org. Also there's a very active Facebook group here: http://www.facebook.com/groups/207942219...

One of the biggest things you'll hear from families affected by Polymicrogyria is that every child is so different and the condition manifests itself completely different in each kiddo. That can be both frustrating and encouraging, depending on how you look at it :)

If you have any questions, please feel free to ask. I specifically signed up for this site so I could reply to you, so I'm an open book :) I wish you the best in the journey. Just know that you're not alone -- there are so many families willing to stand by your side.

Oh!!! Speaking of, I'm not sure where you're located, but here is a geographic listing of families willing to serve as "mentors" of sorts. Maybe there's someone near you?? http://pmgawareness.org/Buddy-List.html

Carol - posted on 02/12/2013

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Hi Nicola, don't know when this was posted but, my daughter has been diagnosised in the past year with BPP. She is 7 No doctor could figure what was going on with her. She had man medical health issues. She was recently in the hospital for 2 months due to have got sick. While there we agreed to do the g-tube. It was a tough. We had been wavering on doing it for tow years. The feeding tube has not been going good. Still getting use to it. Our daughter also has a sever eating, drinking problem. We watch what she is eating and she is not drinking much because of the g-tube. He reflux went away shortly after coming home from the hospital as an infant, and we don't worry about the drooling. Her speech therapy has help a lot with that. You can facebook me if you want to talk private. Good luck and I hope this isn't late getting to you.

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Kim - posted on 05/09/2013

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Baby Boy was diagnosed when he was about 3 months and was taken to the hospital for "failure to thrive'. He has had 15 surgeries up til now (7 years old). We were told that he would have difficulty walking (he had bilateral talipes) if ever and at 3 was given a diagnosis of mental retardation. Fortunately for us, he didn't read the books or listen to the pundits. He started out in a delayed program but is now attending mainstream 1st grade and he runs and jumps like a champ!! (He did fall off of a jungle gym and broke his arm in two places but that's what little boys do...yes?) I write all this to say that I agree that all children with this disorder are different and the beginning was the hardest for us. He is on a g-tube and has been since he was 3 months but we are optimistic that he will eventually not need it. There are other issues, but we deal with them one at a time. I am wondering if there are any other parents out there that have children who are older who have been mainstreamed and are experiencing any hyperactivity in class etc.

Kasy - posted on 02/23/2013

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Hi Nicola, I came across your post today and wanted to let you know there are definitely other parents out there that share your story. Like Jessica mentioned, when it comes to Polymicrogyria, there are many different situations, and the link she shared is spectacular!

My son has Congenital Bilateral Perisylvian Syndome and was diagnosed when he was 8 years old (he was previously misdiagnosed with Cerebral Palsy). I found the best way to help myself and other parents was to write (but again, I like writing). I started a blog at http://www.perisylviansyndrome.com and have had a lot of other parents reach out to me through that blog.

Feel free to contact me anytime, I love chatting with other like parents.

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