Bilateral Perisylvian Polymicrogyria

[Guest guest]

My son was diagnosed with BPP in Novemeber 2007. We noticed that he

had " low tone " at around 4-5 months and were referred to Early

Intervention. We began working with them on a weekly basis to

strengthen his muscles and build his motor skills. When he wasn't

sitting on his own at 7 months, he was referred for a Neuro consult.

All his labs came back " normal " until we received the results of the

MRI. We were told that he would be developmentally delayed and most

likely have speech issues, but all the information was very vague

and some did not apply to our son.

We arranged for a second opinion at the Walsh Lab at Children's

Hospital in Boston. We were told that although the PMG is there, it

is atypical, mild and doesn't look like " classic textbook " PMG.

Encouraging, but didn't change much.

As with most kids with this syndrome, everyone presents

differently. He babbles and is very vocal. He doesn't have problems

with swallowing, but is just getting used to chewing crunchy, thick

foods. His low tone and delayed motor skills continue to be the

biggest challenge right now.

I joined this group because my husband and I feel like we have just

been sent out into open sea in a canoe. We cannot get any answers

that we haven't already heard/know. We do everything we possibly can

for the little guy, medically, physically, etc., but I guess it has

come down to faith and acceptance...we seem to be finding ourselves

a little short these days.