Greetings from Finland

[Guest guest]

Hello! We are family from finland, we have a four years old boy who

has been diagnosed with (Congenital Bilateral Perisylvian

Syndrome)polymicrogyria. We are willing to share

experiences with other famlies who has child/children with

polymicrogyria. If anyone can tell us what future will be like with

polymicrogyria it would fill a litle bit of our hole of ignorance. It

would be intresting hear you who have lived with PMG to adult age,

please give us information about how we can help Ville to grow up

living with PMG.

Our boy (Ville) speaks multi- word sentences. Speaking is indistinct,

but understandable. He drools a lot (does it ever going to end?)!!

Consumption of shirts are unbeliavable =).

How is it with your children who can speak has the speaking inproved

during time?

-With love

Sami, Kati and Ville

[Guest guest]

I have written about my 14 year old step daughter. Unfortunately, she has not

improved with time and has actually declined in language and skills. However,

this decline may not be due to Polymicrogyria. As a result of her brain

malformations (along with PMG she has Gray matter heterotopia) she has Lennox

Gastaut Syndrome (LGS), a progressive epilepsy syndrome noted for causing mental

retardation and speech problems. I'm not an expert, and we're not fully sure

which condition caused the LGS but I tend to think it's the LGS that is

responsible for her decline since almost all children who have LGS regress even

those cases where there is no evidence of malformations. I keep reading about

how certain types of seizures that are prolonged can be destructive over time

(and she has all these types). There is evidence on the MRI of atrophy on the

side of her brain that does not have PMG leading us to believe the seizures have

taken their toll over time.

PMG may have caused the epilepsy but it seems the epilepsy is what did the

most damage overtime. I hear of so many others on this message board who report

progress, so I wonder if PMG is really to blame when things get worse. From our

experience, it would appear that it's very important to aggressively treat the

epilepsy, if there is any, in hopes of a more favorable outcome.

rinsbahtal wrote:

Hello! We are family from finland, we have a four years old boy who

has been diagnosed with (Congenital Bilateral Perisylvian

Syndrome)polymicrogyria. We are willing to share

experiences with other famlies who has child/children with

polymicrogyria. If anyone can tell us what future will be like with

polymicrogyria it would fill a litle bit of our hole of ignorance. It

would be intresting hear you who have lived with PMG to adult age,

please give us information about how we can help Ville to grow up

living with PMG.

Our boy (Ville) speaks multi- word sentences. Speaking is indistinct,

but understandable. He drools a lot (does it ever going to end?)!!

Consumption of shirts are unbeliavable =).

How is it with your children who can speak has the speaking inproved

during time?

-With love

Sami, Kati and Ville