Discussions By Condition: Bone conditions

does he or doesn't he

Posted In: Bone conditions 3 Replies
  • Posted By: Anonymous
  • September 19, 2006
  • 06:14 PM

My son is 16,he had a small indentation on his chest when he was about 7,over the years this got worse.We visited the doctor who refered us to hospital were it was dicovered tha he also had mild scoliosis,he is tall and as stretch marks on his back,he also as a heart murmur.Because he hasn't got really long fingers the doctor said he didn't have Marfans.I am worried that if it isn't diagnosed things could get worse as he gets older.He is having pain in his shoulders and neck but the doctor says it's because of his posture and thers nothing they can do,I don't like to keep going back and making a fuss but if it gets worse I might have to.I wondered if he really could have Marfans but not showing all the symptoms.If anyone can help me please reply.Thanks

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  • As I am still involved in getting a diagnosis, I have been in contact with the National Marfan Foundation and a local Marfan Clinic. I haven't had my son formally evaluated yet, but both have told me that most doctors don't know enough about it, and that a pediatrician/doctor familar with Marfan should do the evaluation. There are things about Marfan that can *not* be determined in a regular check up -- such as an enlarged aorta -- which can only be determined with an echocardiogram (not just an xray).The NMF has a question link where you can post questions -- I would post what you have written here -- a medical professional (nurse) will respond with area clinics that might help you out. They will also send other information if you request it. My question was responded to within about 2 days.http://www.marfan.org/nmf/index.jspI want to say that because my son is so young (6) I haven't expedited this process much, but I have been in contact with his pediatrician about my concerns, and we jointly agreed to wait until his well checkup, which won't be until December. I intend to get a referral then to the local Marfan Clinic. I just didn't want to mess up on the insurance (though I have PPO). Good luck, and let us know what happens.Kind Regards. Kali
    Anonymous 42,789 Replies
    • September 20, 2006
    • 11:49 AM
    • 0
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  • Thank you for pointing me in the right direction.I will let you know how we get on. lib
    Anonymous 42,789 Replies
    • September 20, 2006
    • 01:18 PM
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  • echance.... On January 31st, 2007, my son was diagnosed with Hypermobility Type Ehlers-Danlos Syndrome. His heart is ok right now, though he complains of it beating too fast sometimes. He's had a couple of joint issues since dx, but because I know more about what to expect I think we're handling these changes ok so far. I hope that you've gotten some answers about your son. Take care.Kali
    Anonymous 42,789 Replies Flag this Response
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