Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Older Children

Tffortytwo Message
15 Jan 2014, 10:46 PM

My son, who turned 19 today, was diagnosed just last year with PCH 2. So far we have been unable to find other families with older teens and adults with PCH 2. So far MRIs have shown no change since his first at age 2 years. . .
secretwindow Message
9 Mar 2014, 05:57 PM

There are some on facebook in a group called Pontocerebellar Hypoplasia (All types), most of them are young but there are one or two in there teens...I don't know if you know of this group already but it is worth a try :) I am in it.
Tffortytwo Message
10 Mar 2014, 01:31 PM

Thanks - found the group after I posted this.