Re: so many questions...

[Guest guest]

,

Have you seen Rob's blog? http://www.schuylersmonsterblog.com/

Sounds as though your little guy has some similarities to Schuyler.

Keep asking questions -- you are your baby's best advocate.

Blessings,

mom to 5

[Guest guest]

Take him to see Dr. Dobyns in Chicago.. that's what I would do. Never heard of

bihemispheric, but it could be another way of saying bi lateral.

They told us our son had profound hearing loss too...at age 1, 2, and

then by age 3...realized that he had perfect hearing...after taking him to

several audiologists for second opinions.

He actually wore hearing aids, and we were learning to sign. He hears

absolutely perfectly now...and they suspect that it was more a neurological

disconnect, than an actual non hearing ability.

He is still non verbal... but visual and hearing are great.

Seizures with PMG often start later.. in many cases...but a full EEG study

can help determine what his brain activity looks like.

You are blessed that he can walk and play.... our son is in a wheel chair and

never developed most physical and mental motor skills...but he has some...and he

is a happy guy.

Keep on them about the hearing thing.... it was actually the American School

for the Deaf audiology team who concluded...doing some non convential auditory

testing..that was hearing normally... he just can not respond at all to

what he is hearing.... as he got older, his responsiveness has improved...

Be strong. It's ok...

Mom to daniel, bilateral diffuse PMG, 80%

wrote:

Hello Everybody,

We started thinking our son couldn't hear in November of last year.

We had an ABR and he was diagnosed with profound hearing loss in both

ears. We had an MRI to check out his audidtory nerve and the doc saw

" irregularties in the brain " we went back for our second MRI on

Wednsday and spent the entire day at the Hopital and have now been

told that our son has bihemispheric PMG, he also has a very small

corpus collosum. we still haven't found the reason for the hearing

loss, anyone out there with a child who has this as well? He has

never had a seisure, is that normal, might he escape that? He is

hitting most of his normal growth and devolopment milestones for an

18 month old, he is 15 months old right now. He laughs he play's, he

is so happy. He seems so normal, except that he can't speak, but I

think that is the hearing, well I know it is, he makes sound, he wags

his tongue side to side, he doesn't really drool. He understand's so

many games we play. Is that normal? Do things he can't do start

popping up more as he gets older? Why can't I find bihemispheric PMG

is that the same as something else? What do I need to ask my Doc? I

hope this isn't to long, I have more questions, so many, but I will

wait and see what you all have to tell me.

Thanks,

In the middle of a difficulty lies opportunity.

Einstein, Albert