By Diana on Monday, June 05, 2000 - 03:35 pm:

I have been posting under amersport about my 8 yr old son. He has been having problems with his knees a couple of days ago we took him to the doctor and she
took X-Rays of his knees and hips. She said they looked prettty normal although it looked like they might have been effected by a calcium deficiency because the
bones flare out a little bit. Currently, she thinks he might have Marfan Syndrome and I was wondering if anyone knows of what osteoporosis would look like on an
X-ray starting out, and if it effects the bones like it does with some people with EDS. Also, I am very unsure about the doctor we have been seeing she doesn't seem
to know much at all about this syndrome and I was wondering if anyone else knew of anyone in the Southeat South Dakota area or near by who specializes in these
areas.
Thank you
Diana

By Debbie on Thursday, January 18, 2001 - 06:42 pm:

Hi Diana,

I have Marfans and have tremendous pain in my knees and ankles, however all xrays look totally normal. All blood work is totally normal. In other words, most doctors conclude there is nothing they can do for me. I just found out about Prolotherapy which treats the ligaments and tendons of joints. Ligaments and tendons don't show up on xrays. Try www.prolotherapy.com for more information. I am going to seek an evaluation for potential treatment. Keep trying doctors until you get results! Your son deserves resolution.

By C on Saturday, January 10, 2004 - 10:45 am:

If you, or your husband (his father) does not have Marfan, than it is rare that your son does. You can get the syndrome without a parent having it, but apparently that is rare, and in those cases, they say it results in more obvious, pronounced signs of the syndrome.

You say he is having problems with his knees. I assume this means pain. If he is doing a lot of running and playing, then maybe he has done something, or they are just sore. Also, it could be growing pains, for that matter. Try putting him on a really good multi-vitamin and make sure he gets plenty of calcium, through milk or a supplement, and see if he doesn't improve.

I am not a doctor and wouldn't rule anything out, but unless you or his father has Marfan, it is rare that your son would.

By Az on Thursday, October 28, 2004 - 08:46 pm:

have a look on www.marfan.org under Orthopedic Concerns. I couldnt find anything about children having calcium deficiancy, but osteoporosis is a common problem for people with Marfans after the third decade which is earlier than people without the condition.
Not overley sure about the knees flaring, but do know that this is a common thing in the hips. Apparently it was thought that tutankhamun had Marfans syndrome because of his wide hips, long fingers and toes. Of course this is all guesses, but the symptoms are very true.

By Debbie Tidmore on Monday, January 03, 2005 - 03:37 pm:

It is very likely that I have Marfans because of 2 heart abnormalities. I have Mitro Valve Prolapse (which about 10% of the population have) and an enlarged aortic root. Neither of my parents have the disease. I was not diagnosed until age 32.

Now my son, age 7 has been having chest pain and breathing difficulties over the last 6 months, but tests show nothing of significance. His aortic root is at the upper limits of normal at 24mm. He is also starting to have an increasing frequency of headaches. Has anyone else seen similar symptoms?