Re: CONGENITAL BILATERAL PERISYLVIAN SYNDROME???

[Guest guest]

,

Bilaterial means its on both sides of the brain.

My son has bilaterial PMG. His is considerated moderate per Dr. Dobyns.

He can walk,run, talk up to 9 word sentences.

He does have problems with using spoon & fork to feed himself.

He is cognitively delayed. He is 8 yrs old and acts like a 3-4 yr old.

He does not have any handwriting skills. Puzzles are very difficult for him.

He also has a seizure disorder......mostly controlled but does have the staring

ones at times.

Hope I was able to help you with some of your questions.

Take care,

Donna(mom to Trevor,8 yrs old)

Georgia, USA

CONGENITAL BILATERAL PERISYLVIAN SYNDROME???

Dear All,

My nine week old son had recently been diagnosed with pmg but i received a

letter from Great Ormond Street today about him calling his condition Congenital

Bilateral Perisylvian Syndrome is this a type of pmg is this good or bad?

What are the implications of this with regards to his life although i know a

little i feel i am never given the full picture.

I s their anyone else with this particular diagnosis?

and

[Guest guest]

My son Dillon has congenital bilateral perisylvian syndrome. He will be 3 in

May and he just started crawling a couple of weeks ago. His biggest setback

seems to be the receptive/expressive language. He does not talk. He has oral

aversions and is still on pureed foods. The neurologist said he would have a

learning disabilility but could not tell to what extent. Dillon continues to

make good progress although it is slow. He is generally very happy and plays

all day long. He is not a good sleeper and we are pursueing the consultation of

a sleep specialist in the hopefully near future. The one thing that the neuro

did say is that he did not necessarily think that all was lost. Children with

this condition present a wide range of abilities and disabilities, nothing is

cut in stone, every child is different. You just need to provide your son with

the things he needs to help him develop to his greatest potential.

Harriet

[Guest guest]

There is a large groove in the sides of your brain that separates the front from

the back, this is the sylvian fissure. Thus peri (around) sylvian is around the

sylvian area.

Harriet

[Guest guest]

Hi ,

also has congenital bilateral perisylvian polymicrogyria and

isn't it such a mouthful to say when people want to know?!!! It

sounds terrifying when someone tells you your child has a abnormality

of the brain and you haven't a clue what to think, so you tend to

think the very worst.

The other replies you've had are as much as I could tell you, and

that's been excactly what I've read on the internet, as my son

Derrick and daughter-in-law Terri were told very little of what it

actually meant. It seems that the most likeliest problems will come

with feeding and talking, and developmental delays in most other

areas. To what extent this will be depends on the child. Every child

is different. So far, apart from the first few weeks and his recent

bad spell, was managing to feed very well from a bottle, which

we hadn't expected at all, considering all that we'd read. For us,

I'd say the seizure control is most important, The more frequent the

seizures are, the slower the progress.

Very best wishes to you, your husband and little .

Carole ('s nanny)xxxxxxxxx