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Nov 22, 2017 · Anyone with keutel syndrome? in About Kids & Teens

I am connected with the Facebook group for POGZ White-Sutton Syndrome, and I have asked if any have a abnormal brain MRI, and no one does. Could I be dealing with 2 separate issues, I have noticed that many of them suffer with migraines and cyclic vomiting, yet my concern is that if my son’s abnormal brain MRI could be the main cause of his migraines getting more frequent and severe, the school staff that work with my son say yes kids get migraines but not anything like your son.

Nov 12, 2017 · Anyone with keutel syndrome? in About Kids & Teens

Hi my name is Lisa, my son who is 5 was just diagnosed with White-Sutton Syndrome , autosomal dominant, pogz. He also has mild vermian atrophy of the cerebellum we are hoping to get another MRI by the end of the year.
I have been told that only about 30 people have been diagnosed with WSS, I am wondering if this is 30 people in the U.S.A. or the whole world.

Nov 12, 2017 · White-Sutton syndrome in Brain & Nervous System

@colleenyoung , 36 cases just in the US or the whole world?

Nov 11, 2017 · Cerebral Brain Atrophy in Brain & Nervous System

We are hoping to get another MRI by the end of the year, so far people that have this do not have any abnormal brain MRI’s. I was pretty disgusted with the Mayo last time, I tried to get my son in to see the neurologist there, because I had an outstanding balance they refused to set an appointment with the neurologist, since when is money so much more important than any human beings health, not just my son. At our hospital here in town we owe them triple of what we owe the Mayo Clinic, and they do not refuse us service.

Nov 9, 2017 · White-Sutton syndrome in Brain & Nervous System

Anyone dealing with White-Sutton syndrome, (POGZ) I would like to know more on this very rare syndrome, any and all information is greatly appreciated.

Nov 7, 2017 · Cerebral Brain Atrophy in Brain & Nervous System

@hopeful33250 , Wesley was diagnosed with White-Sutton syndrome, that explains all of the developmental delays, only about 30 people have been diagnosed with this. This is not linked in anyway to the cerebellum. 2 separate issues, still need another MRI to see if there are any changes occurring.

Oct 24, 2017 · Cerebral Brain Atrophy in Brain & Nervous System

@howardjames , Hi Noreen it’s Lisa Praska, my son who is 5 has cerebellar atrophy, we go back to the Mayo on Nov 6th for his genomic large panel results, he was just in for his yearly eye exam and his vision has gotten quite a bit worse, is this to be expected ?
Sincerely,
Lisa Praska

Sep 27, 2017 · Cerebral Brain Atrophy in Brain & Nervous System

@howardjames , we go back to the Mayo Clinic to find out his Large panel testing results on Nov. 6th, wouldn’t tell us anything over the phone..pretty nervous