Pontocerebellar Hypoplasia
What is Pontocerebellar Hypoplasia ?
Pontocerebellar Hypoplasia is a group of rare degenerative neurological disorders resulting in the atrophy of the cerebellar cortex.
Last updated 10 Mar 2014, 01:31 PM
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.
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. . .
Last updated 23 Sep 2010, 08:46 PM
23 Sep 2010, 08:46 PM
Just wanted to say hi. Please see my profile for our story, ask questions, share info. etc...thank you! ~Heather
Last updated 1 Sep 2010, 03:56 AM
1 Sep 2010, 03:56 AM
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 annoid2000@yahoo.com please feel free to contact me x
31 Aug 2010, 04:40 PM
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?
Last updated 30 Jun 2010, 08:32 PM
30 Jun 2010, 08:32 PM
How old is anyone out there with this disorder? My grandson is turning 2 in August.
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Older Children
Created by Tffortytwo | Last updated 10 Mar 2014, 01:31 PM
Type?
Created by secretwindow | Last updated 1 Sep 2010, 03:56 AM
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Created by secretwindow | Last updated 30 Jun 2010, 08:32 PM
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