Anyone know about Marfan Syndrome?

Discussion in 'The Watercooler' started by upallnight, Sep 29, 2007.

  1. 1905

    1905 Well-Known Member

    My 2 easy child kids have this. This is really devastating-Friday we go to Childrens Hospital of Phila. to the cardiologist. I can't breathe, eat or sleep. They can't reverse any damage done to the heart, they can only slow it down or surgically fix things. I won't know anything else until we see what condition their haearts on Friday.
  2. tiredmommy

    tiredmommy Site Moderator

    {{{Hugs}}} I'm sorry you are going through this, hopefully there will be no significant damage. I've heard wonderful things about CHoP, hopefully their reputation holds true in this case. Please try to take care of yourself this week so your kids won't be worried, I can't imagine what this sort of news would make a teenager feel like.
    Here's a link for info on Marfan for those of us that don't know about the syndrome:
  3. I had a wonderful young man with Marfan Syndrome several years ago as a client in my work. He was such a delight to work with. He was a young adult and had treatment from a very young age. He was very tall and slender, as is typical, and his cardiac issues were pretty much under control. He was doing quite well.

    My grandfather's best friend also had Marfan Syndrome. When I know him he was in his fifties- and while his physical size presented issues he also was a very pleasant individual who appeared to be doing quite well.

    It's encouraging to hear that your children have been identified and are going to get some good treatment. Hang in there, and know that thoughts and prayers are coming your way.
  4. susiestar

    susiestar Roll With It

    I am sos orry that you all have to cope with this. But I am thankful that you have a diagnosis and can get treatment. I will keep you in my prayers.

    Good luck at the hospital. My experiences with Childrens hospital of Cincinnati was amazingly wonderful, each of them. I hope that your children's hospital is just as wonderful and kind and compassionate.

  5. 1905

    1905 Well-Known Member

    1 Day At A Time-Thank you for that. I went onto that website earlier in the week and had recieved a packet of info already from them. My younger easy child is not allowed to play football anymore, but he wants me to take him to practice every night still. How could I deny him? He sits on the bench, tonight his team has a game not near here- I'll take him, he feels like he's a part of the team. He is so skinny, I didn't know something was wrong. Susie, so far they have been wonderful to us. I was so impressed. I feel confident that they are going to be in good hands. difficult child came over today and they couldn't play ball-difficult child was so kind. Once Friday comes, and we know exactly what we are dealing with, I'll fell better I hope. The not knowing is scary.-Alyssa
  6. Fran

    Fran Former Site Owner

    Hugs. You are a warrior mom getting armed with information and being backed by a good team of medical professionals. You will help guide your children to new and better treatments.
    Hang in there. Science is making progress on so many areas. You just don't know what the future holds.
  7. SearchingForRainbows

    SearchingForRainbows Active Member

    I'm so sorry!!! I'm keeping your children in my thoughts and prayers that this was caught as early as possible...

    difficult child 1 had an EKG last year when our pediatrician suspected Marfan Syndrome because of his build - Very tall, thin, and has large hands and feet. We were lucky. difficult child 1 doesn't have this.

    From reading your post, you're doing everything you can for your children. I know you'll get them the best possible care.

    Sending lots of cyber hugs...WFEN
  8. Steely

    Steely Active Member

    Just wanted to send hugs. Science is changing every day, we never know what new cures, or solutions are on the horizon.
    Hang in there, and my thoughts and prayers are with you.
  9. Hound dog

    Hound dog Nana's are Beautiful

    Sending along my prayers too. I came across Marfan Syndrome while doing a search on Nichole's odd symptoms.

  10. DDD

    DDD Well-Known Member

    I don't know the syndrome but I do know from decades of experience that a child with a Warrior Mom can usually have the
    best life God affords. Focus on the Serenity Prayer. You will
    have the strength to accept the things you can not change etc.
  11. nlg319

    nlg319 New Member

    My sister's husband has Marfan's Syndrome...You are doing the best thing by going to Children's Hospital and getting the best care. Good Luck...You'll be in my thoughts.