& Phyllis/GI issues/Welcome Rachael

September 20, 2004

Hello & Phyllis,

Just out of curiosity...I am sitting here at Primary Children's

Hospital and we just returned from downstairs for an EEG (we are

waiting for Dr. Bale to come and give us the results; we are in our

third week of ACTH treatments and are hoping to see an improvement--

happy to report we haven't seen any spasms since the second day of

treatment--we are keeping our fingers crossed that the EEG confirms

good news!!!! SMILE!!!!) Anyway, after the EEG was over, the tech

asked us if Polymicrogyria was a fairly common disorder. We

explained that to the best of our understanding, it was actually

pretty rare. She then went on to explain that she had never heard of

the disorder until today, and that Ashlynn was the second patient

that she had seen today for an EEG with this particular disorder. Of

course, she couldn't give us any information, SOOOO....we were just

curious, by some small chance of luck, did have an EEG today as

well?!?! I know the odds are slim that it was you, but we don't know

of anyone else in the state of Utah with PMG and can't help but

wonder if it was indeed you, or if there is another child in close

proximity as well?!?! One of these days we REALLY would like to meet

you and your family!!!! If you happen to frequent the hospital any

time this week, we are currently in room 3018 (Ashlynn is

experiencing some puzzling GI issues and the doctors aren't sure what

is going on--her feedings sit and pool in her stomach and are not

emptying into her small intestine--so far they can't find a logical

explanation as to why. It started a few days after we began the ACTH

treatments....WHO KNOWS?!?!?)

, welcome to this GROUP!!! It is the best support you can ask

for!!! Hopefully you will be receiving more information pertaining

to your daughter's diagnosis....until then, remember we are all here

for you! Besides, sometimes you will find more answers to your

questions from the parents in this group than from the doctors!

Thanks to everyone for your support!!!

Sincerely,

Glenn and Lori (parents to Ashlynn, 1 year PMG.....)

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