Where to look for information

[Guest guest]

Hello! My nephew (who is also my soon to be adopted son) has lived with us for

over a year. He came to us from across the country. He falls constantly and is

always banging his head and body on things in his path. Doctors haven't been

able to determine why. He has PT, OT and speech therapies and attends a special

preschool. He is 5 years old. He has a nephew of his own who is 1 and was

recently hospitalized. In searching for answers to his issues, CPS opened the

adoption records of my little guys brother who was adopted years ago and is now

11 or 12. The records show that the brother has polymicrogyria. The caseworker

has asked that we get him evaluated by a neurologist as this can be hereditary.

So now, we are in the referrel process to see if our little guy has a mild form

of this as well. He walked late, talked late, wan't toilet trained until 4, may

be having mild seizures and has issues with falling/getting injured constantly.

His IQ is in the above average range. He drools, has low tone, and needs help

dressing and with most daily activities. We have a 5 year old bio child and

their skills are so different. In looking on the internet for information, I

have found very little. I am looking for a website or two that may help me while

we wait for the neurologist appointment. Any information would be appreciated.

Thanks! -

[Guest guest]

Hi ,

Welcome to the group. You can also check out the Walsh Lab site as it has

explanations of several of the types of neuronal migration disorders that

include PMG. There are " parent " sheets on there that explain PMG.

I am sure you have already read that PMG is diagnosed via MRI, but I want to

mention it is important to have an experienced radiologist read your nephews

films as it is not always detected by inexperienced radiologists, or can be

confused with other brain malformations. One thing you can do, if you don't get

a definitive answer from the MRI and neurologist, is send your nephews MRI films

to the Walsh Lab for a complimentary review. They are part of the expert team

in the US when it comes to neuronal migration disorders.

I hope this helps! Keep us posted....

Krista

>

> Hello! My nephew (who is also my soon to be adopted son) has lived with us for

over a year. He came to us from across the country. He falls constantly and is

always banging his head and body on things in his path. Doctors haven't been

able to determine why. He has PT, OT and speech therapies and attends a special

preschool. He is 5 years old. He has a nephew of his own who is 1 and was

recently hospitalized. In searching for answers to his issues, CPS opened the

adoption records of my little guys brother who was adopted years ago and is now

11 or 12. The records show that the brother has polymicrogyria. The caseworker

has asked that we get him evaluated by a neurologist as this can be hereditary.

So now, we are in the referrel process to see if our little guy has a mild form

of this as well. He walked late, talked late, wan't toilet trained until 4, may

be having mild seizures and has issues with falling/getting injured constantly.

His IQ is in the above average range. He drools, has low tone, and needs help

dressing and with most daily activities. We have a 5 year old bio child and

their skills are so different. In looking on the internet for information, I

have found very little. I am looking for a website or two that may help me while

we wait for the neurologist appointment. Any information would be appreciated.

Thanks! -

>