Stillwood Posted November 4, 2011 Share Posted November 4, 2011 My son has it. It was barely noticeable then suddenly grew larger at age 14. He has it on one side. He's seeing a surgeon at Arnold Palmer Hospital, Florida in two weeks. Wondering if wearing a brace is another option. Have read the brace must be worn 22 hours a day for two years. Can't see my son doing that. I have found tons of information about Pectus evacatum, but barely anthing relating to PC. Ds has not performed well in school this year, and am wondering if this has anything to do with it. He has very low blood pressure, heart pain, palpatations, shortness of breath and zero energy. Quote Link to comment Share on other sites More sharing options...
Stillwood Posted November 4, 2011 Author Share Posted November 4, 2011 The protrusion is not on the same side of his heart. So don't understand the pain and palpitations, also has tacycardia. He's 5-7, 89 lbs and has an armspan of 6-3", & is double jointed, if that means anything. Quote Link to comment Share on other sites More sharing options...
kalanamak Posted November 4, 2011 Share Posted November 4, 2011 He's 5-7, armspan of 6-3" This sounds Marfanoid. There is more info on Marfan's online than pectus c. If he's having chest pains and tachycardia, I'm glad he's being seen by the specialist. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted November 4, 2011 Share Posted November 4, 2011 My ex had both carinatum and excavatum, one above the other. He had the surgery as a freshman in highschool and unfortunately had another growth spurt so it came back, although not quite as badly. He refused to do the surgery again. He had to wear a big pad like a catches pad on his chest for quite a while after the surgery and was made fun of in school. He wears clothes that are baggy enough to hide it, but if you hug him you can feel it very obviously. My biggest advice is to wait until any growth spurts are over!! Quote Link to comment Share on other sites More sharing options...
ktgrok Posted November 4, 2011 Share Posted November 4, 2011 I agree that that is all the markings of Marfan syndrome. I'd have his heart checked ASAP. Quote Link to comment Share on other sites More sharing options...
Stillwood Posted November 4, 2011 Author Share Posted November 4, 2011 DS was examined by a pediatric cardiologist in Orlando, 2 years ago. I did mention Marfan but dr. didn't think he had it. DS had many test (except for stress test). Heart was fine, dr. didn't seem concerned about the chest. Quote Link to comment Share on other sites More sharing options...
Stillwood Posted November 4, 2011 Author Share Posted November 4, 2011 (edited) about your knowledge of Marfan syndrome. Do you have any children with it? My son was such a bright boy but lately, as I mentioned, he's having trouble with math. Did fine last year up to Saxon 76, we started Pre-Algebra (TT... the easy one) and he's making mistake after mistake in the first few chapters. I'm hoping his breathing problems are what is clouding his mind. PS: I had a typo in his arm span, it is actually 5'8" not 6'3". If his heart checks out perfect, than he can't have Marfans.... right???? Edited November 4, 2011 by Stillwood Quote Link to comment Share on other sites More sharing options...
kalanamak Posted November 4, 2011 Share Posted November 4, 2011 If his heart checks out perfect, than he can't have Marfans.... right???? No. He might still have it. Medicines are often given to prevent problems down the road. I have had three Marfan's patients off the top of my head, and they had no LDs, although I didn't test math. :) Quote Link to comment Share on other sites More sharing options...
Mary in VA Posted November 4, 2011 Share Posted November 4, 2011 My BIL had an aortic aneurysm about 12 years ago. He had a successful valve replacement. At the time they suspected Marfan's and had my dh and his other brother get echocardiograms to make sure they didn't have problems. We did a lot of research into Marfan's. Even if the heart is okay it can still be Marfan's. And even if it looks okay now, things can develop later because it is a connective tissue problem - the layers separate. My dh has had two more echocardiograms for comparison, to make sure his aorta hasn't increased in diameter indicating a problem. We don't think dh and his brothers have Marfan's though. The National Marfan's Foundation has this list of the body systems with the problems potentially caused by Marfan's. A Marfan's sufferer doesn't have to have all the problems to be diagnosed with Marfan's. What body systems are affected? Heart and Blood Vessels (Cardiovascular system) Enlarged or bulging aorta, the main blood vessel that carries blood from the heart (aortic dilation or aneurysm) Separation of the layers of the aorta that can cause it to tear (aortic dissection) “Floppy” mitral valve (mitral valve prolapse – MVP) Bones and Joints (Skeletal system) Long arms and legs Tall and thin body type Curvature of the spine (scoliosis or kyphosis) Chest sinks in (pectus excavatum) or sticks out/pigeon breast (pectus carinatum) Long, thin fingers Flexible joints Flat feet Teeth that are too crowded Eyes (Ocular system) Severe nearsightedness (myopia) Dislocated lens of the eye Detached retina Early glaucoma Early cataracts Other Body Systems Stretch marks on the skin, not explained by pregnancy or weight gain Sudden collapse of the lung (spontaneous pneumothorax) Swelling of the sac around the spinal column (dural ectasia). This is found with CT or MRI scans of the back I think it would be wise to have your ds thoroughly evaluated for Marfan's. There are many problems that can be prevented by watching for them and treating them before they develop. The National Marfan Foundation web site is a wealth of info. www.marfan.org HTH, Mary Quote Link to comment Share on other sites More sharing options...
Stillwood Posted May 9, 2012 Author Share Posted May 9, 2012 Thank goodness he doesn't have Marfans. He does have both Pectus carinatum and excavatum. The carinatum keeps his right lung over inflated, and the excavatum pushes down on his heart. We had the option of surgery or bracing and decided on bracing. His color is already better. He doesn't feel like he is going to faint every time he stands up. We're fighting to keep him wearing his brace, as it hurts and will for awhile; but he knows this is something he must do. His breathing and heart issues will abate as his chest changes to a normal position. I'm hoping that with his heart and lung not affecting him that he'll catch up in his school work. Quote Link to comment Share on other sites More sharing options...
Mary in VA Posted May 9, 2012 Share Posted May 9, 2012 Thanks for the update and glad to hear he doesn't have Marfans. Glad to hear the brace is working too!:001_smile: Quote Link to comment Share on other sites More sharing options...
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