Marfan Syndrome Support Group
Marfan syndrome is a connective tissue disorder characterized by unusually long limbs. The most serious conditions associated with Marfan syndrome primarily involve the cardiovascular system. Marfan syndrome may cause leakage of the mitral or aortic valves that control the flow of blood through the heart. This may produce shortness of breath, an irregular pulse, and undue...
I got the call today that my sons eco looked good but my Dr said he still has all the symptoms of marfans so she is setting an appointment for a specialist in peoria for Cody and she is also setting an appointment for a optimalogist. He has worn glasses for a long time now. My sons Dr said the eco doesnt rule everything out. What other tests do they do to see if your heart is doing good? I thought an eco did all that? oh boy, I am so new to all this. I have to trust the Doctors. My son is in there hands and it scares me. what do you do for the pain? I tried to ask for mild pain medication for my son but she wouldnt give me anything just yet. She said for him to take ibprofren and that doesnt help at all. Also, have an identical twin sister and we married brothers. I have been with my husband 22yrs now. Well, she was telling me about the same symptoms her one son has and I told her she needed to get him in to be seen soon. any answers would be greatly helpful in knowing what my son should expect from a first visit from a pecialist in marfans. Thank you for all your help!
I have the cardiac symptoms of Marfan, so those are the primary foci of Marfan medical management for me. Marfan causes the body to manufacture defective connective tissue; the genes involved have been discovered and their functions analyzed. This would probably be an important aspect of your son's examination. The doctors will weigh him, and measure relevant bodily dimensions, including arm length, leg length, spinal length, and the proportionality of each. Marfan folks sometimes have eye problems, so the doctor will check his eyes.
I was glad to read that your son does not have the cardiac complications of Marfan; however, if he does test positive, he will still need to be kept under surveillance, because they could develop later in life. Good luck, and keep us informed.
Good luck
Stephanie