Results 1 to 5 of 5

Thread: Some new (to me) stuff on Marfans

  1. #1
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901

    Some new (to me) stuff on Marfans

    My kids had their echos and everything was normal.

    The pediatric cardiologist mentioned he was now involved in a study of Marfans which obviously is a good thing in our case.

    As I understood him, he said that if you have Marfans and get through your 20s, basically, if you get to 30 without any aortic root enlargement, the chance of enlargement and dissection drops off a lot after that point. He is not saying the chances drop to zero so he is not in contradiction to the metabolic geneticist who said you can never stop monitoring if you have certain indicators. But I think if my girls get to 30 then they can relax about it and maybe only get echos every 5 or even 10 years.

    He recommended they continue to get echos every 2 years until they are out of their teens and then I think will have to hand them off to an adult cardiologist. So it will be interesting to see that that next person says when we cross that bridge.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Great news!
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Yes, that's great news Sharon - and it must be quite a relief. I'm very happy for you and your girls!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  4. #4
    Join Date
    Nov 2005
    Posts
    402
    That's very encouraging news Sharon! I'm very pleased to hear it

  5. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Thanks gals. I appreciate that.

    I read somewhere and don't know if I mentioned it here but it seems that a majority (though not all) Marfans patients have the eye signs/symptoms. My daughters both have perfect eyesight so that's another good sign they don't have Marfans.

    They only have involvement of one system (skeletal) to date though they have several issues within that system. A curious thing is that one issue, pectus excavatum resolved on its own though they had what the pediatrician referred to as "moderate" cases meaning more than mild and less than severe.. it was immediately noticeable to everyone who saw them. They had that as toddlers and pre-school age but have no sign at all of it now and haven't for several years. I don't know how common it is for moderate cases of P.E. to resolve on their own but I attribute it to the power of no prayer whatsoever if is is unusual.

    If they only ever have just the skeletal findings then they will never meet the diagnostic criteria for Marfans and likely don't have it, thus vindicating the predictions of the orthopedic surgeon and pediatrician.
    Last edited by Pooka1; 08-11-2010 at 07:36 AM. Reason: define "moderate"
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •