Bilateral frontoparietal Polymicrogyria

[Guest guest]

Hi All,

I am very new to this group but not new to PMG. I don't know much about the

malformation except that my daughter's doctors have all told me that it is very

severe. Her entire brain is affected. When she was 2 days old she was

transferred to Children's Hospital of Philadelphia NICU due to breathing issues.

Her breathing issues ended up having her trached and g-tube/nissan

fundoplication placement at 6 weeks old. When she was 4 days old she had an MRI

of her brain and her Neurologist told us all we can do for her is to love her.

She was supposed to be in a vegetative state due to the severity of the

malformation. That is not the case. She has numerous medical issues which we are

not sure if are caused by the PMG or not. She is a complicated kid, but doing

just the opposite of what the Dr.s said she would do. She was not supposed to

walk, she doesn't, she runs all the time. She was not supposed to be able to

swallow due to severe dysphagia, she just started eating puree's in the past 6

months, not enough to get rid of the g-tube though. She is considered legally

blind due to central cortical visual impairement. She is missing the septum

pellicudim and her corpus callosum is very thin. She is no verbal but says a few

sounds, definitely gets her point across! She was just diagnosised with ADHD and

MR. She was tested for the GPR56 gene and does not have it, she receives all

kinds of therapy....I am trying to understand her and find out any information

about PMG I can. One dr. tells us that she won't function and another tells us

that she is writing her own book b/c she is doing things she should not be

doing! Also, she does not have seizures, is this common? If anyone can help that

would be wonderful!! The dr's didn't seem to have much info. They just don't

know!

[Guest guest]

Hello,

I would like to share our sons story...

Our son was born very premature, 27 weeks gestation.. He had tons of

respiratory issues at that time due to his early birth his lungs being extremely

under developed..he had his typical preemie complications nothing out of the

ordinary.. Two days after birth he had a head ultrasound which showed a brain

hemorrhage which is common in premature birth due to the delicateness of the

baby.. A day or so later doctors told us the hemorrhage had resolved and when

the time of discharge came close an MRI would be done to examine his brain.. The

MRI is routine at discharge.. After 80 some days in the hospital our son had his

MRI and it was sent to a local children's hospital it was looked at by a

pediatric neurologist and the findings said Generalized polymicrogyria.. His

NICU doctor had to look it up he had not a clue of how or what to say.. He had

never come across a person with PMG. The info he gave us was a few online

printouts that gave a very dark and scary outcome.. He had very limited info and

at discharge on my sons 92nd day in the NICU he went home breathing on his own

and drinking from a bottle on his own.. We followed up with pediatric

neurology.. And all she said was... PMG presents it's self differently in every

child it's to early to say what he can do and can't do we just have to take the

appropriate measures to maximize his capabilities.. Of course me being the

curious mother and working in the medical field I did tons of online research

which gives Grimm hope.. I fell into a deep depression if it wasn't for my

husband and my mother that helped my through it I don't know how I would have

done it.. They have always remained very optimistic.. Our son turns 2 in oct and

has limited speech he does not walk he can bear weight on both legs now and

takes little steps... has No feeding or breathing issues his cognition is

extraordinary!! And no seizures!! We have had therapist and doctors jaw

dropped.. He is extremely smart and I'm not saying that because he is my son but

because we see it and have been told.. When it comes to his " PMG " love does not

blind us we see the facts the actions. We want our son to reach his goals with

or without limitations.. He receives physical and occupational therapy. He also

has an infant/ toddler teacher. Every morning I thank God for my son he gives me

strength.. Thank you for taking the time and reading about our son M..

~ASC

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