Re: Resources for PMG kids

October 4, 2011

Dobyns will consult by email and phone. That's what we are doing. But it

requires you work with a local neurologist. Thus far his team has asked for MRI

films, growth charts, diagnoses synopsis and various other medical records. We

may go see him in person but we are waiting to see what kind of feedback we get

going this route. He recommended one of the neurologist's at U of M for us, so

you could ask for Neurologist recommendations too. Hope this helps. Take

everything one day at a time and don't forget to breathe. This journey is not an

easy one but believe me you are not alone. Oh and have you started the ball a

rolling with your local or state programs for special needs kids? The Earlyon

program here in MI has been the greatest support system for my son and for me.

It's offered through the school district free of charge. Provides physical,

occupational, and speech therapy. In VA the program was offered through the

health Dept and it was called early intervention.

â€œI am learning all the time. The tombstone will be my diploma.â€

â€” Eartha Kitt

> Hi everyone,

>

> We are new to this whole PMG experience. My granddaughter, Brie, is 12 weeks

old today and was diagnosed with PMG at 3 weeks old. We still do not have a

doctor who has a clue about PMG. So, we heard about Dr. Dobyns in Seattle but

trying to find a way to finance the trip from ville, FL to Seattle (could

it be any further away?) is extremely daunting, to say the least.

>

> Does anyone know of any organizations or resources for families of PMG kids

that might help with expenses to travel for care?

>

> Thank you so much for any input!

>

> Catrina, Brie's Gram

>

October 4, 2011

I wonder if he would just do a chart/MRI review. I know I still reread his

report. I found it a good experience to meet with him because I had such global

anxiety/worries and he just gave me a list of problems. He said he would of

liked the MRI to be after 1 years old. He was on it for us. What questions about

PMG do you have their are very experienced people on this group ask away?PMG is

a migrational disorder when the brain forms first month of pregnancy the edges

do not migrate to the areas and take on their proper roles. This can happen

bilateral both sides or unilateral one side. These kids can have seizures,

cerebral palsy, vision and swallowing problems, language/speech and learning

problems. Each one of our kids are unique and similar at the same time. My

daughter is 5 she has only right sided damage but it is frontal, temporal,

parietal, and occipital lobe damage. She has language delays, processing delay,

left hemiparesis cerebral palsy and a visual neglect but the seizures are the

worst part. With all that said she is running playing soccer and in preschool

with typical developing kids. We have been very proactive with therapy and I

read lots of email from CHASA and do many suggestion before the problems arise

but what do I know I feel like my journey has just started too.Diane

To: polymicrogyria

From: catrina1118@...

Date: Wed, 5 Oct 2011 01:13:50 +0000

Subject: Resources for PMG kids

Hi everyone,

We are new to this whole PMG experience. My granddaughter, Brie, is 12 weeks old

today and was diagnosed with PMG at 3 weeks old. We still do not have a doctor

who has a clue about PMG. So, we heard about Dr. Dobyns in Seattle but trying to

find a way to finance the trip from ville, FL to Seattle (could it be any

further away?) is extremely daunting, to say the least.

Does anyone know of any organizations or resources for families of PMG kids that

might help with expenses to travel for care?

Thank you so much for any input!

Catrina, Brie's Gram

October 4, 2011

Hello Diane,

I have just read with interest that your daughter has PMG on the right side. My

grandson also has PMG on his right side. He is 14months old, has just started

commando crawling around the house. As yet, he cannot sit upright by himself. He

doesnt talk yet, but babbles some noises. What age did your daughter start

walking. Also did she get her teeth later. My grandson has no teeth yet but they

are all there we saw them on his MRI. Have you started speech pathology yet?

Deb Hedley

Ph: 03 93489469 W

0407233831

________________________________

To: polymicrogyria

Sent: Wednesday, 5 October 2011 1:02 PM

Subject: RE: Resources for PMG kids