Medical Question re: friend of my DD

Moms View Message Board: General Discussion: Archive July 2004: Medical Question re: friend of my DD

Today my DD received a phone call from a boy in her class who she's been close friends with for years. He informed her that he may not live more than another two years or so because of an abnormality in which his heart is not growing/can not grow enough to keep up with his body (He was well over 6ft. tall by the time he turned 13) Does anyone know what such a disorder might be called so that I can look up more info.? I would call his mom, but she just lost her husband less than a year ago in an accident, and I don't want to ask her too many questions about her son until I have more information to go on... TIA for any info.

By Kate on Saturday, July 10, 2004 - 11:08 pm:

How sad. I'm no expert but it sounds like Marfan Syndrome to me.

By Cybermommyx4 on Monday, July 12, 2004 - 01:13 pm:

Just bumping this since I posted on a Saturday night....I have looked up the little info I have online, and I can't find anything yet...

By Amy~moderator on Monday, July 12, 2004 - 02:54 pm:

I just looked for about 15 minutes on Google and can find nothing. I will try later when I have a bit more time. I will also ask my mother Bubbels who is a Medical Transcriptionist - she may know what this is.

By Emily7 on Monday, July 12, 2004 - 05:42 pm:

http://kidshealth.org/Search01.jsp

this should take you to a site that will have articles about this.
My prayers are with him & his family.

By Emily7 on Monday, July 12, 2004 - 05:46 pm:

if you go to that site & type in marfan syndrome it will bring up articles.

By Amy~moderator on Monday, July 12, 2004 - 06:25 pm:

I checked with my mom and she didn't know. It sounds like Emily has some good info for you. I will also be praying for the boy and his family.

By Ginny~moderator on Monday, July 12, 2004 - 07:27 pm:

One of the partner's daughters has Marfan's syndrome. She is 13, about 6 feet tall, terribly long arms and legs - disproportionately so - and very, very thin. She is scheduled to have surgery near the end of this month to replace her aorta. I agree, it does sound like Marfan's. There are a number of sites if you type Marfan's into Google, but I'd start with Emily's link.

By Tink on Monday, July 12, 2004 - 08:18 pm:

My dh was tested for this as a child because he was over 6 feet tall before he was 11 and had some other symptoms. I really don't know much about it but I am so sorry for this boy and that your dd is having to learn such a tough lesson at such a young age.

By Pamt on Monday, July 12, 2004 - 08:22 pm:

Wendy,

Personally I think the best thing is to ask the mom. I think it can very disastrous to play doctor and search for a diagnosis based on the limited amount of information you have. Yes, it could be Marfan Syndrome, but it could also be a zillion different other things like a cardiac defect, a growth hormone issue, etc. We aren't privy to the child's medical records nor are we doctors. I had a child I recently evaluated that I was CERTAIN had Marfan Syndrome. I was worried enough that I referred mom immediately to a pediatric cardiologist and a geneticist. The cardiology was a bust since the child had no cardiac problems because he had another syndrome (Sotos syndrome) entirely. I would just politely say to mom, "I heard that X was ill and I would like to be able to help in any way, etc." or "X told my DD that he was really sick and she was confused about it...." You really don't even need to know the exact diagnosis to be a comfort and support to the family. With the fact that she has no husband (and that grief must still be fresh), just go ahead and offer emotional support and help with MD appt's, a break for mom, etc. I'm sure she would appreciate your help and concern

By Ginny~moderator on Monday, July 12, 2004 - 10:43 pm:

Pam, I think you are right on point. I agree - you don't need to know the diagnosis or anything about the condition to offer support and sympathy.