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Cerebral Brain Atrophy: Anyone else out there?

Stroke & Cerebrovascular Diseases | Last Active: Aug 9 6:53am | Replies (272)
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@lisapraska

@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.

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Replies to "@hopeful33250 , Wesley was diagnosed with White-Sutton syndrome, that explains all of the developmental delays, only..."
Teresa, Volunteer Mentor | @hopeful33250 | Nov 7, 2017

@lisapraska

Thank you for updating us on Wesley's diagnosis. While this is a very rare disorder, I do see a Facebook Page which is dedicated to those who have received this diagnosis, https://www.facebook.com/Pog-z-White-Sutton-Syndrome-1185996388101616/. Perhaps you can find some more support there as well.

As I recall, your son has been involved with occupational and speech therapy. Are doctors offering you any other suggestions for coping and addressing his developmental problems?

I would also like to introduce you to our Caregivers' Discussion group.
@IndianaScott is the volunteer mentor for that group and there is a wonderful group of people who support and encourage each other. Here is a link to those discussions https://connect.mayoclinic.org/group/caregivers/.

Please keep us updated, we want to support you in whatever way we can during this time. Has the MRI been scheduled yet?

Teresa

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