We just had our semi-Annual check up... with cardeo and the results were as good as can be expected. Alex's (15) blood pressure was 144/98 we need to follow up...
Has anyone seen or heard of the movie "MO"? It's a great independant film that follows a high school boy who finds out he has Marfan Syndrome. It stars Erik...
Has anyone seen or heard of the movie "MO"? It's a great independant film that follows a high school boy who finds out he has Marfan Syndrome. It stars Erik...
HI, UNFORTUNATLY, I BOUGHT IT THINKING IT WOULD BE GREAT FOR MY 10 RY OLD DUE TO HIS ISSUES OF FEELING "DIFFERENT". MAN WAS I WRONG!!!!!!! I WAS OUTRAGED...
I bought the movie, and loved it. I don't believe it showed that drugs are o.k. at all. In real life my daughter tryed marajuana. It was a true story about a...
Northern California Chapter of the National Marfan Foundation's (NCCNMF) First Annual Regional Marfan Educational Symposium Event Date: Saturday, 5/3/2008 Time...
Hello, I know it is very rare for children to get DE, dural ectasia, but I know it does happen. Well my son who is almost 8, has been complaining of back pain...
HEY LARIE, MY 10 YR OLD HASN'T HAD THAT KIND OF PAIN, BUT DOES HAVE MIGRAINES AND I NOW KNOW AFTER A SPINAL TAP, THEY PROB NEED A BLOOD PATCH, BRANNON DIDN'T...
... I don't have much technical info on DE just personal experience. I did not show signs or symptoms of DE until after I gave birth to my son and had an...
Hello everyone, Vickie and Kelly thank you for your posts. I apritiate the input. We took my son to a different Dr. yesterday and he examend his back more...
Larie, My 18 year old has an "S" curve in her spine with one curve being 38 degrees.? The docs refused to brace her and said it wasn't bad enough.? She doesn't...
NO PROBLEM LARIE, (SORRY ALL CAPS, AT WORK) I AGREE WITH HAVING HIM CHECKED BY THE DR'S AT SEATTLE. YOU HAVE TO BE REALLY CAREFUL WHO YOU SEE BECUASE BELIEVE...
Hello, I can relate to what you are talking about my 14yr old sons who has marfans went through the back pains and headaches and it was do to him having a...
Hi my daughter had the surgery a year ago this month and hasn't looked back. Her scoliosis was 38 and 45 and although she hadn't had pain it was beginning by...
Plan to Attend Medical Presentation Learn About Marfan Syndrome and the Eyes & Mouth How to Interpret Echocardiograms and TEEs What are the signs of retinal...
I can't attend this but it looks like it would be very interesting and helpful. Wouldn't it be nice if one of you techie people did a video of it and put it...
Well my 16 year old, petite sized daughter has a mild case of scoliosis we have recently been told. She complains of back and neck pain a lot. We've been...
Hey Lisa, They have got my son started in physical therapy right away. It should strengthen his core muscles and so help reduce the pain he is having. Mabey...
From everything that I have ever heard, don't take her to a chiropractor!!!? Sometimes this can make things worse...? and sometimes things can get damaged...
Hello Everyone! My name is Jenny and I'm 23 and from Omaha NE. When I was 15 i had a sponotaneous pneumothorax. I went the emergency room where i was put on...
The way I understand it is--If you know you have Marfans, they keep an eye on your heart and eyes and check for changes in aorta size and such so they can...
Hi Jenny, Yes. It is definitely worth knowing whether you have marfan syndrome or not. Each person that has it is unique. You may only have a few of the...
Jenny, This is a hard call in some ways.? I have two daughters with Loeys Dietz, a very similar connective tissue disorder.? For years we thought that their...
Today my sons physical therapist told me that he has some vertebra that are more interior than they should be, they tilt inward, and that is more likely what...
GOOD LUCK LARIE, I WISH YOU BOTH THE BEST OF LUCK!!!! VICKIE larie beck <ty_ree_b@...> wrote: Today my sons physical therapist told me that he has some...
Hello, All! I am wondering, for those of you who have children, how old were your children when they were diagnosed with Marfan Syndrome? I was seen by many ...
HI, MY SON WAS DIAGNOSED IN APRIL 2005, AND WILL BE 11 IN JUNE. LIKE YOUR CHILD, HE WAS OFF THE GROWTH CHART IN HEIGHT VERY EARLY, AND TO THIS DAY ONLY WEIGHS...
Hello Amanda. I have 9 children. My 10 year old was first diagnosed with Marfans at age 3. Since then we have been told by many doctors that it is Marfans, or...
My son was diagnosed at birth, and he is now 7. He had every characteristic aon the chart! I highly encourage the conference, the Doctors are amazing. We...
