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Old 10-09-2007, 11:35 AM   #1
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Question Marfan Syndrome

Does anyone have or have a child that has this?
I have it and my son does, just looking to see other people's experiences.
Thanks.
Marisa

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Old 10-09-2007, 11:48 AM   #2
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Re: Marfan Syndrome

My dad's family has a genetic tissue disorder that is similar to Marfans. It is like his family took 2 or 3 genetic disorders and mixed them all up to be a brand new disorder.

We have had studies done on our family at the NIH in Washington and the closest known disorder it is similar to is Marfans. My grandmother and uncle both passed away from aortic dissection and that's when we started looking further into it, and had everyone tested. My dad and my other uncle both have St. Jude valves (metal replacement valve) and a lot of my family is on beta blockers to stop the aorta from stretching.

Luckily my aorta isn't enlarged, never has been so no medication for me, but I have some of the skeletal and cartiledge problems. I have to have an echocardiogram every 2 years, and my son will start having them when he gets a little older.
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Old 10-09-2007, 12:00 PM   #3
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Re: Marfan Syndrome

i have it but it is very mild. my oldest had an echo at 4 months and was normal. we went in for his 2 yr check up and that started a whole slew of appointments, the first of which was cardio. they found 'significant' aortic dilation and prolapse of both aortic and mitral valve. they put him on bb's too and said that he'll probably need surgery. DS2 has a completely different morphologym so much so that i feel like we were just kidding ourselves thinking that our first didn'y have it when you could always see his ribcage and his fingers totally are spider like.
we lived in dc for a year and saw all of these specialists there, so if you see ped.genetics you may be refered to dr. rosenbaum at childrens.
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Old 10-10-2007, 05:15 PM   #4
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Re: Marfan Syndrome

My cousin has it. Along with something else but I can't remember what. He was misdiagnosed for years as having autism or fragile x. A Dr finally put two and two together when he started having heart problems. He was born almost two months early weighing 14lbs and was over 3ft tall on his first b-day but no one seemed to think this was a problem. He also has detaching retinas (I think that is right) and doesnt' see very well which the Dr's told his parents was part of the Marfans. Turns out my other uncle has it as well, but the only health issue he has had was the detaching retinas thing. I don't know much more about it though, this has been a very very recent diagnosis for him.
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Old 10-10-2007, 09:00 PM   #5
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Re: Marfan Syndrome

My DH has "marfan like" symptoms, but was not diagnosed with the syndrome. He has a dilatated aortic root, but it hasn't grown at all in the past six months (yeah!).
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Old 10-11-2007, 11:22 AM   #6
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Re: Marfan Syndrome

Quote:
Originally Posted by iris0110 View Post
My cousin has it. Along with something else but I can't remember what. He was misdiagnosed for years as having autism or fragile x. A Dr finally put two and two together when he started having heart problems. He was born almost two months early weighing 14lbs and was over 3ft tall on his first b-day but no one seemed to think this was a problem. He also has detaching retinas (I think that is right) and doesnt' see very well which the Dr's told his parents was part of the Marfans. Turns out my other uncle has it as well, but the only health issue he has had was the detaching retinas thing. I don't know much more about it though, this has been a very very recent diagnosis for him.
I can't imagine a 3 foot tall 1yo. My son was tall but not that tall, and he had delayed crawling and walking. Right now he doesn't exhibit any eye problems but he has heart issues.
The thing that I always think about is that it's a 50/50 chance that it will be passed on to my children and the severity varies and is completely unrelated to how severe my problems are or how severe his/her brother's problems are... so my next kid could be 3 feet tall at one year. The only advantage I now have, as does your cousin, is that i know that it is a possibility and know how to get treated.
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