Re: Neurologist NEEDED in ville, FL area ASAP

[Guest guest]

Hi Ladies,

I agree that all of our kids should see Dobyns or have your childs records

reviewed by him but you dont have to travel all of the way to Seattle to see

Dobyns. He will be at the Convention this summer for the Foundation for Children

with Microcephaly, which includes migrational disorders like PMG and LISS. The

Convention will be in sdale, Arizona in mid June. Dobyns and his team will

be there and additional specialists that he can get to come and the Walsh Lab

that does genetic research.

It wouldnt hurt to contact him before the convention and get the ball rolling.

Let him know that you will be at the convention and work with your local

Geneticist to get the tests run the Dobyns wants.

Another benefit of coming to the convention is in some ways better than seeing

Dobyns, its all the other families that you will meet that understand and are

your instant friends. Its a life changing experience.

My daughter is 8 years old and has PMG, bilateral fronto-parietal. She also has

Cerebellar Hypoplasia, Microcephaly, PVL, Seizures, Spastic and Mixed tone CP.

She wants to walk but has almost no balance. Her determination is amazing

though. She has come along way from a very sickly infant to a healthy child. She

was silently aspirating for a long time and once that was fixed everything else

started to fall in line. We just found out today that she has cataracts, so

thats our next hurdle.

Good luck,

1c.

Re: Neurologist NEEDED in ville, FL area ASAP

Posted by: " Catrina Byrge " catrina1118@...

briesgram

Tue Oct 4, 2011 4:34 pm (PDT)

Donna,

Thank you so much for your reply. I have read about Dr. Dobyns and we are

trying to figure out how we can afford to get her to Seattle to be seen.

Unfortunately, financing the trip to Seattle is more than a little daunting,

but he certainly is our top choice.

Thanks so much!

> **

>

>

> You need to take her to one of the top specialist in the country in the

> field of PMG.

>

> Dr. Dobyns

>

> He just moved to the West Coast but if I had to do it all over again, I

> would not waste my time with regular neuros and go see him.

>

> We saw the old neuro at NEMOURS in Jax when my son was 8 yrs old...we also

> got nothing from them.

>

> Donna (mom to Trevor, 15 yrs old moderate BPNH+PMG, seizures, feeding

> difficulties, ect, ect ect,...)

>

> From: polymicrogyria [mailto:

> polymicrogyria ]

> On Behalf Of briesgram

> Sent: Tuesday, October 04, 2011 4:49 PM

> To: polymicrogyria

> Subject: Neurologist NEEDED in ville, FL area ASAP

>

>

> Can anyone recommend a neurologist in the ville, FL area? The one we

> have at Nemours is AWFUL! It's so hard going through all of this and then

> you have doctors who don't have a clue about her PMG.

>

> Brie, my granddaughter is 12 weeks old today. If anyone knows any other

> specialists in our area, I would love to know about them too.

>

> Thanks so much for being here!

>

> Brie's Gram, Catrina

>

>