Pontocerebellar Hypoplasia is a group of rare degenerative neurological disorders resulting in the atrophy of the cerebellar cortex.
Thanks - found the group after I posted this.
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.
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. . .
Just wanted to say hi. Please see my profile for our story, ask questions, share info. etc...thank you! ~Heather
hi sorry i haven't been on here for a long time, my son harvey was ruled out for type 2 and 1 but sadly he died before the rest of the diagnoses tests could be done 6 months ago now. he was 13 months old . i'm sorry to hear your grand son has it also. there is a group in the yahoo health groups with about 50 members who share information (mainly about type 2 ) but alot of the symptoms and medications and issues are the same. i highly recommend joining as they are a great support and a wealth of information. here is the link for you to follow, just introduce yourself, i hope you find the support you are looking for xxx anne http://groups.yahoo.com/group/PCHType2#n=home&c=home&p=0&v=none just copy this link above and paste it into the search bar at the top of the page, my email address is firstname.lastname@example.org please feel free to contact me x
Ben, my grandson has type 3, only 5 in the world with this type what type do yours have and what are the signs and symptoms?
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