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WE WERE JUST DIAGNOSED

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Hi Everyone,

 

My name is Robin Hudson and I am new to this site.  I have been on the

Microcephaly site pretty frequently since my son also has Micro.  I also am the

State Representative for California for the foundation of Children with

Microcephaly.  We had our first annual conference in Arizona over the past

weekend and I had the honor of meeting with Dr. Dobyns from Chicago who gave us

the diagnosis of PMG.

 

At first just had Microcephaly.  Then after an MRI, he was diagnosed with

Pachygyria, a form of Lissencephaly.  Then after seeing Dr. Dobyns, he said we

were misdiagnosed and that he had PMG.  I don't know anything about PMG.  My son

is 2 1/2 and very active.  He walks, runs, plays, etc (all things that we were

told he would never do).  He doesnt talk yet, but he understands everything we

say.  He has his own way of communicating with us and pulls us everywhere

pointing at what he wants.  He has learned some sign language already and we

plan on continuing to teach him. 

 

I wanted to know what I can expect with PMG.  Dr. Dobyn's said that he is very

likely to have seizures.  He has never had one that I know of and I have always

been told that the longer they go without them, the better chance they won't

start???  When did all of your children's seizures start (if they have them). 

What are the problems associated with PMG?  Do your children have the ability to

talk, learn, etc?  I would love to hear from some of you to see what I can

expect in the future.

 

Thank you for any help you can offer.

Robin (Mom to the most amazing little miracle!)

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