Re:so many questions...Us too.

January 21, 2008

Hi ,

Our little man is also Profoundly deaf and has PMG. We found he was deaf in

one ear at 3 weeks due to screening tests which are done here in Australia.

He lost most of the hearing in the other ear by 6 mths and has had hearing

aids and now cochlear implant and is waiting for his second.

As he needed the MRI for the Cochlear we then found out About the PMG. He

had right side weakness which has been labled hemiplagic ceberal palsy. He

has some delays but is meeting most miles stones at the late end of normal,

and has no seisures. He of course can not talk but is working at it and the

speach Pathologist is very pleased with him.

Torin's problems were caused by CMV infection in utero. This can be proved

by doing a blood test on the new born blood test if they keep them where you

live. Here in Aus they keep these Guthery Tests for 2 years. The CMV

infection continues to affect the kids after birth and it attachs the hair

cells in the ears and so destroys hearing. It is the most common cause of

hearing loss after genetic problems. You may like to follow this up.

Our Neuro says that many brains have odd shapes and things and if therre are

no indications no one ever knows unless they are tested for. Some brains are

so abnormal that it is a wonder that they were functioning people, but they

had been just ordinary normal members of society. He said please remember

that PMG is a description of the brain not a diagnosis of anything.

Elise just keep asking questions of everyone, I hope you live in a big city

as appointments get very busy with hearing tests and aids and hopefully with

powerful aids he may be OK. Join a Deaf Group on the Internet thay other

parents are a mine of information. I do not know where you live but here in

Australia all hearing related things, aids batteries and even Cochlkears are

free for all children and boy do we know we are lucky. If you want to chat

just give me a buzz on climison@....

Best of Luck

Grandma Carol, Torin 18mth, Bilateral DefusePMG, hemiplagia ,Profoundly

Deaf, my little red heaired monkey.

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