Thank you all for the warm welcome...i really appreiciated everyone's replies to my 1st post. We dont even know if we are dealing with marfans yet, but I do...
Hi Helen, I'll be curious to see what your dr. suggests. My daughter has 3.0 at sinuses, and our dr. suggested we come in once a year for an echo. We had her ...
Cathy, I'm glad your daughters aorta is "stable" however the little I know about before dissection I think I would get another doctors opinion. I don't know...
Marsha, Thanks for your reply. You made some good points. My daughter has been diagnosed with connective tissue disorder, but which one we don't know. She ...
Hey Mike, If there has been any interest shown, besides myself, in a week day morning chat time, I would love to volunteer. As a mom that works part time, my...
I think that is awesome when we find doctors that listen and give us excellent care. It is very important that we reach out to other marfan families in the...
Hi Regina, we hate to see you go, if there's anything we can do for you let us know, however if you insist on leaving at this time here's how to do it, you may...
Wendy, Sorry we missed each other in chat tonight. Wednesdays are kinda new and I forgot until late but a couple of us did get there. Sundays are busier but...
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marfans_support_and_c...
Feb 12, 2006 1:56 pm
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Hello My 9 year old daughter and I both ahve Marfan's syndrome. She and I were diagnosed when she was 6. I have severe scoliosis and had spinal fusion surgery...
Don Wrote : The hardest thing I have to deal with is ... Hi Don, I am new but your post touched me. Neither one of my parents had Marfans in fact when one Dr...
it is not easy having kids with it my daughter cannot do alot no sports no pe granted that she likes friends that treat you crappy cuz you are different then ...
It can be very frustrating dealing with doctors who don't show initiative to want to learn about Marfans or tell us the wrong things to do or not to do. One...
Hello, My name is Sharon. My son was diagnosed today with possible Marfan's. He passed out at school this past week. He met with the Pediatric Cardiologist...
HI Sharon, My daughter has been Diagnosed as "at risk" for ADHD as well as me. I have yet to see any definitive testing that is concrete as far as an accurate...
Many children wh oare actually bored in class because they require greter stimulation are misdiagnosed with ADHD. Of course it's not scientific research, but...
If your daughter is even a tiny bit above average I can promise you she will have a diffcult time in shcool. I live in Massachusetts and they are suppose to...
Joey has a very high IQ but problems with comprehension and is easily distracted. They took him off his Concerta(cold turkey). Does anyone know of a safe...
HI sharon, My daughter was on concerta and started having seizures. The Pediatrician told me that there was no way that this med could cause a seizure. After...
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It's great to hear of parents who take their kids off of the ADD meds, or never put them on the meds, and then pro-actively figure out other ways to deal. It's...
My, again unscientific, belief is that this is prevalent in people with Marfan because our connective tissue is so thin that the electrical messages in our ...
Hello Sharon, My son is 5, and was diagnosed last year with mfs. He has pretty bad vision problems, and mildly dilated aorta. He has always been big for his...
I have the same problem filtering informations. I get so frustrated when I know the answer, but it doesn't come to me until after a meeting. I hate people...
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