Re: Info Please

[Guest guest]

Hi ~

My son's original Dx was liss as well. I think that one has PMG or liss-

not both. I think the reason for most mis-diagnoses is inexperienced

personnel reading the MRI. I would imagine that many never come across

this condition in their practices. The first neurologist I took my

to see was in Hickory, North Carolina (I think there's someone on this

list from Hickory- *waves*). At the time (10 years ago), I was given the

bleakest prognosis and told my son would probably not live much past the

age of five. The problem with this prognosis was that they were looking

more at the info they had on lissencephaly, and less at my son. I really

think that the child's parents/caregivers are the best judge of their

child's abilities.

has been very lucky. His PMG is isolated to the right side of his

brain, so his physical problems are all left-sided. Also, it would seem

that the left side of his brain took up the slack, so to speak. He's

doing above average academically and is in grade 5 now. He didn't start

having seizures until he was 5, and they stopped when he was 9. Since

the seizures were all mostly at sleep times and never interfered with

his breathing, I never put him on any medication.

I wish you and Maddie all the best, and I'm glad you found this

wonderful group. Just remember that although the information and support

you'll find here are priceless, you won't find a definitive prognosis

for Maddie here. You're best off to focus on the present and do

everything for Maddie that you can right now, and leave the future to

take care of itself.

All the best~

(Mom to , 11 and a snotty 17 yr old named Trey who is by far

more work and worry than his " disabled " brother)

apage8506 wrote:

>

>

> Hi my name is andra and my daughter Madison was diagnosed w/ PMG. We

> were origanly told she had Lissencephaly but now we are being told that

> she does not have Liss. I know a lot about the Liss but nothing about

> PMG really. I know what it means and thats about it. So I was wondering

> if you guys could give me some info. I was wondering what tests there

> are, how severe your kids are, and what prognosis were you given, and do

> any of your kids also have Liss?

>

> Madison is 2, she has epilepsy, CP, feeding tube, she cant sit, or roll.

> The only milestone she has met is she can smile.

>

> Thank you all in advance

>

> and Maddie

>

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

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12:32 PM

>

[Guest guest]

,

Both Lissencephaly and Polymicrogyria (PMG) are both neuronal migration

disorders (NMD). I have attached a link to a webpage that one of the leading

experts (Dr. Dobyns) has compiled concerning the different types of NMD's.

There is a lot more information at this site, I hope you will find it

helpful.

http://www.lissencephaly.org/medical/info/update95/index.htm#Types

and Carver

Hickory, NC

_____

From: polymicrogyria [mailto:polymicrogyria ]

On Behalf Of apage8506

Sent: Monday, March 31, 2008 2:10 AM

To: polymicrogyria

Subject: Info Please

Hi my name is andra and my daughter Madison was diagnosed w/ PMG. We

were origanly told she had Lissencephaly but now we are being told that

she does not have Liss. I know a lot about the Liss but nothing about

PMG really. I know what it means and thats about it. So I was wondering

if you guys could give me some info. I was wondering what tests there

are, how severe your kids are, and what prognosis were you given, and do

any of your kids also have Liss?

Madison is 2, she has epilepsy, CP, feeding tube, she cant sit, or roll.

The only milestone she has met is she can smile.

Thank you all in advance

and Maddie

[Guest guest]

Your daughter sounds alot like mine, only her original dx was pachygyria;

similar to liss. She has since had the dx changed to difuse, bilateral pmg, ie

it effects all of her brain. she will be 7 years old in July and has only ever

reached the smiling milestone. (which she did at approx 2-3 months old just like

any other child) she developed epilepsy at around 3 years old and had her feed

tube fitted at around 5 years old. It is hard to imagine, looking back, that we

did not know anything was wrong until she was 5-6 months old. We have never been

given a prognosis other than she will not lead an independant life, her life

span will be reduced, but to enjoy her day to day and give her the best life we

can.

Only time will tell how andra will progress, i wish you all the luck in the

long road ahead............

Dom, father to Chloe, aged 6 diffuse bilateral pmg, G tube, rotational osteotomy

ops on each hip, epilepsy, cannot sit, walk, talk etc, however a happy smiley

(most of the time) little girl

Info Please

Hi my name is andra and my daughter Madison was diagnosed w/ PMG. We

were origanly told she had Lissencephaly but now we are being told that

she does not have Liss. I know a lot about the Liss but nothing about

PMG really. I know what it means and thats about it. So I was wondering

if you guys could give me some info. I was wondering what tests there

are, how severe your kids are, and what prognosis were you given, and do

any of your kids also have Liss?

Madison is 2, she has epilepsy, CP, feeding tube, she cant sit, or roll.

The only milestone she has met is she can smile.

Thank you all in advance

and Maddie

------------------------------------------------------------------------------

No virus found in this incoming message.

Checked by AVG.

Version: 7.5.519 / Virus Database: 269.22.1/1350 - Release Date: 30/03/2008

12:32