Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 I just recently joined this group. My 11 year old son was diagnosed with both PVNH and polymicrogyria last year. The diagnosis came after he had his first seizure on his tenth birthday. When he didnt respond well to the medications the MRI was ordered and it showed the diagnosis. He has always had learningand other issues. I found a FB support group for the PVHN and someone shared this group on there. I was wondering if anyone knew of any in person support groups for polymicrogyria in either NJ or Philadelphia. I have asked CHOP where he sees his neurologist but they havent given me much info. Is there anyone else on here from the area? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 Please feel free to go to our website too at www.pmgawareness.org and click on the tab that says CONTACT A FAMILY. This will give you a listing of families by geographical location. Also, if you would like to be added to that program, you can send an email to mel@.... Have you found your way to the FB PMG support groups? You can find them under our RESOURCES page. Welcome to the group. There are many amazing people here who can help us all get through this, together With Appreciation, Catrina Byrge C.E.O. PMG Awareness Organization, Inc. www.pmgawareness.org catrina@... (and Brie's Gram Sent from my iPhone > I just recently joined this group. My 11 year old son was diagnosed with both PVNH and polymicrogyria last year. The diagnosis came after he had his first seizure on his tenth birthday. When he didnt respond well to the medications the MRI was ordered and it showed the diagnosis. He has always had learningand other issues. I found a FB support group for the PVHN and someone shared this group on there. I was wondering if anyone knew of any in person support groups for polymicrogyria in either NJ or Philadelphia. I have asked CHOP where he sees his neurologist but they havent given me much info. Is there anyone else on here from the area? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 Welcome to the group glad you found us sorry for the reason. Maybe you can call the early intervention through education dept this where you usually get plugged in to your area resources or a parent to parent network where they have school advocates http://www.pachildren.state.pa.us/portal/server.pt/community/advocacy_resources/\ 2156/parent___family_resources/401346 I live in Indiana and attend a CP moms group. Moms of kids with special needs of all ages they have so many resource's locally I find it very helpful school educational IEP stuff, therapy and therapist, alternative treatments, babysitting even doctors.Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 My son does have an IEP and is involved with the child study but unfortunately they have not been much help and he still struggles. I asked his neurologist about in person support groups but she didn't know of any in the area so I have joined FB support groups. His pediatricians office haven't had any dealings with either polymicrogyria or PVNH Sent from my Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Hi . I am in Southern NJ, lin Twp. and have a 10 year old (11 in August) with Bilateral Frontal Parietal Polymicrogyria. As far as I know there are no support groups in the area specific to PMG. My local school district has one for parents of special needs kids, so you my want to ask your child study team. I'm thinking since you only recently found your son's diagnosis, he's probably more on the mild end of the spectrum. My son leans closer to the severe end of it as he cannot walk unassisted, does not speak, and he has feeding issues (ie: pureed diet) He has spastic quad CP as a result of the PMG, but does not (knock wood) as yet have seizures (one of very few PMG kids that don't, it seems). You will find here that with the PMG diagnosis, it is difficult to find 2 kids affected in exactly the same manner. Our kids have varying levels of abilities, some have more physical disabilities than others, some have very troublesome seizure disorders, and some have some combination of the 2. This is a great group for advice, support and an occasional vent. I think you will probably find that in the PVNH group with it's more specific diagnosis, you will have a greater likelyhood of finding other children affected in the same manner as your son. Whatever the case, welcome and if I can be of any help with anything locally, feel free to contact me any time. Sue Mom to Meghan(16) and (10) BFPP, moderate spastic quad CP > > I just recently joined this group. My 11 year old son was diagnosed with both PVNH and polymicrogyria last year. The diagnosis came after he had his first seizure on his tenth birthday. When he didnt respond well to the medications the MRI was ordered and it showed the diagnosis. He has always had learningand other issues. I found a FB support group for the PVHN and someone shared this group on there. I was wondering if anyone knew of any in person support groups for polymicrogyria in either NJ or Philadelphia. I have asked CHOP where he sees his neurologist but they havent given me much info. Is there anyone else on here from the area? > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.