DownSyn Forum

pmjc48 · Posted: February 08 2010, 10:04 AM Post subject: DS/CP

Passing this on from another listserv:

********************************************************************************\
*********************

If you have someone in your group with a dual diagnosis of CP and DS, a
member of DSNetwork in AZ would love to connect. Her name is Karen
tworiveras@... , and her story is below:

My son Roberto has always had an unusual gait when he walks/runs. When he
was 8 years old, we were having so much trouble finding a Physical Therapist
that we asked our doc for a referral to an Orthopedist. At that appointment,
the doc took an extensive medical history and examined my son. After the
exam, he referred us to a Neurologist. After the exam at the neurologist, we
were sent to have an MRI of my son's brain. The tests confirmed that Roberto
has Cerebral Palsy! I have looked several times over the past 4 years since
that date, and the only person with a similar dual diagnosis is the son of a
woman I met online who lives in South Africa. I believe she had heard of one
other case, but her son and this other person developed CP as a result of
traumatic brain injury. I have even asked the Emily Center at Phoenix
Children's Hospital to research the dual diagnosis, and they came up with
very little information. I would really like to connect with someone who may
be having similar issues with their child. If there is anyone out there....
Smile

Thank you,
Karen Rivera

_________________
Mum of Nicky 22, and Connor11 who is severely autistic, and five older siblings

EAS1971 · Posted: February 08 2010, 11:27 AM Post subject:

It's interesting that I always hear how incredibly rare DS/CP are and that parents don't know anyone else with that dual diagnosis. There are several on here....I can think of about 5 on here and a couple others IRL. I will make sure some of those moms see this thread. Thanks for sharing this. Smile

Do you have that person's full contact information?

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

kittycat3376 · Posted: February 28 2010, 12:37 AM Post subject:

Sorry it has taken me so long to reply to this. Beth brought this post to my attention, but my computer is down. David has a dual dx of DS and CP. His was caused by a stroke in utero. I would love to chat with her if you can send me her contact info or pass mine on to her.

_________________
http://www.carepages.com/carepages/DavidLucas