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Hi ,

Welcome! I am a lurker to this group. My daughter is 8 and we were active

early on but now I lurk. I saw your post and wanted to know if you were in the

Philly area. We live outside of Glenside, PA. We go to CHOP for everything.

I wanted to comment on the lining up of cars. Before you attribute it to

CHARGE, my son who does not have CHARGE used to do this at your son's age. I

have friends whose kids did it too. It may just be a boy thig. My dad knows

every car in his neighborhood and church and questions when they are moved as

well. There may be other behaviors but remember that sometimes they are just

" kid " things. It's hard to tell because we are so encompassed by CHARGE. I

have at times tried to find answers for my daughter's issues and come to find it

was just a part of normal girl development......I couldn't believe it!!Something

normal when it comes to her?? :)

Also, on the genetics thing. My daughter's geneticist also explained to us that

when tested, may or may not test positive for the CHARGE gene. She made

it clear to us that does have CHARGE and that the results of the test

would only reinforce the diagnosis if she tested positive. If she tested

negative, it would only mean she fell into a different category of the diagnosis

because gene found is only part of the whole syndrome. This explanation is not

entirely acurate. It is my understanding of the explanation given by the

geneticist.

Colleen

Ardsley, PA

mom to , 8 and Sam, 4

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