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Any info?

vford Message
21 Jan 2011, 09:43 PM

I noticed this community had a few other members. Have any of you had any head way getting a firm diagnosis? Also how old are your kids? My baby turns one this month and I am trying to get a better of idea of possibly what the future holds for us. We were told there was a possibility our baby would not walk, just looking for any help or answers! Also have any of your docotors mentioned the combo of the MPPH syndrome with MCM syndrome?
roxy_billy_19 Message
23 Jan 2011, 12:11 AM

Hi my name is bec my son Koby is 12 months and we have been told he could hav MPPH / M-CM. Where bouts are u located? My son has epilepsy and now has a shunt inserted in December he cannot sit unassisted and no were near crawling or walking! I hav started him in physio to see if it helps and I had got no info from Docs to go to one so I went of my own back and she said why didn't I come earlier well no one told me too!! Cause it is such a rare condition I don't think Docs know how o treat it :-( I hav found a great support group through facebook any questions I hav they are happy to answer them. This is the link: hope this helps
vford Message
25 Jan 2011, 06:06 PM

I am actually located in Utah. Where are you located at? My baby is 12 months as well. He just started sitting unassisted this week. However it is only for maybe a couple of minutes. He is no where close to crawling or walking as well. Our geneticist is looking at him having MPPH with MCM as well. However he does not have any capillary malformations. He also has not had hydrocephalus, just very large ventricles. My son currently sees a physical therapist twice a month, an occupational therapist, as well as a developmental specialist. He also see's a neurologist as well as orthopedic surgeon. I appreciate your link the the facebook group. I will try that and see if I can get some more help and answers as well.