Neuronal Migration Disorder or Polymicrogyria

[Guest guest]

Does anyone have a child that has been diagnosed with neuronal

migration disorder or polymicrogyria. Jillyan had a CT done in

October. The purpose was to make sure that her cranial plates were

not fused so she could get a little helmet to remold her head. At

that time I was told -- " We found a minor developmental brain

abnormality, but it is nothing to worry about at this stage " .

This past week I got the genetics report from our visit in

December. I had mentioned this to the geneticist and he looked up

the results of her CT after I left. In the report it states that

the parents are strongly encouraged to get an MRI! No one ever

said " strongly encourage " . Anyway, he put the detail from this CT

scan in his letter to me and mentioned the above as

a " possibility " . Oddly enough, the polymicorgryria symptoms

include, feeding difficulties, breathing issues, low muscle tone,

seizures, hearing and sight issues that are among the most common --

sounds a little like CHARGE . . .

We do plan to get an MRI probably at the end of the summer. We are

going to get hit with the eye surgery this month so I don't want to

add to the growing debt of medical bills. If anyone has experience

with this disorder I would appreciate hearing about what you know

and what your child has gone through.

Huggins

Wife to Robin, Mom to Hailey (5) and Jillyan (10 mos)