Valve issues & mentally challenged people

[catwoman]

My cousin told me this weekend that her son -- nearly 20 -- has MVP, was diagnosed as an infant. The son was born with multiple handicaps (vision, hearing, bilateral cleft palate, had 1 kidney removed @ 1 week) and is mentally challenged. He's very outgoing, is in some regular classes at his high school but will not ever be 100% self-supporting.

I asked her if her son's cardio had said anything about symptoms to watch for and she said no. He just takes 2,000mg of an antibiotic (he's allergic to penicillin so it's not amoxi) before going to the dentist. She didn't mention about taking antibiotics before orthodontic appts; I'm going to e-mail her about that.

I know that my young cousin does have a high pain threshhold, so his mom doesn't always know when he's having problems. My concern is that he could begin to have significant valve problems before he lets on.

Anyone have any experience in dealing with a mentally challenged person who has any sort of valve problems?
I'd like to point my cousin in the right direction. She's hooked up with quite a few support groups, but they're for Special Olympics, special education, cleft palate patients, etc.
He will be facing reconstruction of his lower jaw in the next 1-2 years, the same surgery I underwent at age 17.

 

[Tom F.]

My wife is Executive Director of a small non-profit agency in suburban Chicago that provides daytime services to persons with developmental disabilities. The program has a strong focus on people with autism. A year after my surgery a person served there had to have their aortic valve replaced. That person was under 30. He went through the surgery and the recovery very well. In fact, by 30 days after surgery one could not see any evidence of fatigue or other after effects of surgery.

 

[Nancy]

I believe that a couple of years ago we had a mom with a son who was in a similar situation and had valve replacement. I wish I could remember the name. I'll search around and see if I can come up with any past posts.

 

[catwoman]

Thanks for both of your responses.
I'd like to provide information to my cousin so she can be watching for signs in her son. She knows how my deteriorating valve affected me.
She lives in the Houston TX area, home of the Texas Heart Institute and where there are some excellent ACHD cardios & surgeons.
I'm trying to encourage & prepare her son for his eventual jaw surgery. If his surgery is like mine, his jaws will be wired together for 6 weeks and he will be on liquids during that time. He doesn't like soup, and you can't have malts/milkshakes 3X day for 6 weeks without having cavity problems. I had soup for lunch & dinner, malts w/ raw eggs added for additional fat & protein. My cousin is already dreading that 6-week period of liquid diet while her son's jaws heal back in the shortened position.
It's hard to imagine how a person like him can understand dealing with a valve problem that could deteriorate, like many of ours did.
Nancy, if you can find posts by/about the member's son, I'd appreciate it. I've given my cousin the address here.t

 

[Nancy]

I did a search, but was not able to come up with any of this mother's posts. Can't figure out what word or words would bring them up. Sorry.