RE: anyone in england?????!!!!!!!!!!!!!!!!!!!!

[Guest guest]

Sorry I am ot in England. I did live there for a year as a child

My son Sammy is 11 months this week and was diagnosed with PMG at three

months (He has visual problems as well)

I think the hardest part is not knowing and loving so much and worry.

My advice is to try to focus on the practical like getting him set up

now for developmental services, especially physical therapy. For Sammy

we did a lot of visual stimulation as well.

PMG by my understanding is not a disorder but rather a brain abnormailiy

involving how the folds of the cortex are developed. There is no direct

relationship between structure of the brain and function. Nonetheless

when you have a structual impairment there is more likely functional

impairment. The range is huge

My son did not read his MRI but he is thriving and working to the best

of his ability. My job is to love him and try to give him a home to

bring out the best he can be. Yes I worry and when he was a bit older

than your son I was a wreck too. It takes time but ask us whatever you

want and we will try to be supportive and helpful

Sincerely,

rachel295925 wrote:

> my seven week old son has just been diagnosed with pmg.

> Iam confused and scared and quite frankly baffled by the whole thing.

> What does the future hold for me and him.

> Iam desperate to find other parents in england going through this

> please get in touch!!!!

>

>

>

[Guest guest]

Hello, I’m in England!!

My son Finlay has PMG, but it took a long time to get that correct

diagnosis from the doctors. It was thanks to Dr Pilz we now know he has

Bilateral Perisylvian Polymicrogyria. Finlay also has microcephaly

(very small head), which was the first thing that alerted us to the fact

something could be wrong.

It is very difficult to talk about the future, each child presents

differently. It is entirely dependent on which part of the brain is

affected.

Finlay is now 2 ½ and is a happy loving child with relatively mild

spastic quadriplegia. Obviously there are a lot of things that cause

concern and frustration, both for us and for him. We are lucky because

in our area all the necessary services and therapies are centralized in

the local Children’s Resource Centre.

If there is anything specific you wish to know, I will try and answer as

best I can.

Best wishes

Annelies

anyone in england?????!!!!!!!!!!!!!!!!!!!!

my seven week old son has just been diagnosed with pmg.

Iam confused and scared and quite frankly baffled by the whole thing.

What does the future hold for me and him.

Iam desperate to find other parents in england going through this

please get in touch!!!!

_____

[Guest guest]

Hi ,

My grandson, , was born last October and diagnosed with PMG in

November. I know exactly what you are going through and have had a

tough time, as I expect you have too, coming to terms with this and

wonder what the future holds. Unfortunately, it seems no-one can tell

us that, as every child is different.

We are in Basingstoke, Hampshire, where are you?

Best wishes, Carole

> my seven week old son has just been diagnosed with pmg.

> Iam confused and scared and quite frankly baffled by the whole

thing.

> What does the future hold for me and him.

> Iam desperate to find other parents in england going through this

> please get in touch!!!!

[Guest guest]

Carole wrote:Hi ,

My grandson, , was born last October and diagnosed with PMG in

November. I know exactly what you are going through and have had a

tough time, as I expect you have too, coming to terms with this and

wonder what the future holds. Unfortunately, it seems no-one can tell

us that, as every child is different.

We are in Basingstoke, Hampshire, where are you?

Best wishes, Carole

> my seven week old son has just been diagnosed with pmg.

> Iam confused and scared and quite frankly baffled by the whole

thing.

> What does the future hold for me and him.

> Iam desperate to find other parents in england going through this

> please get in touch!!!!