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Pediatric cardiology

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Bert Find out more about Bert
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  • Pediatric cardiology

    Someone told me that if your son is an adolescent he should be seen by a pediatric cardiologist. We've been working with NEMC in Boston and so far like them, but are awaiting to do more tests. So, I was wondering if that could be a problem given the fact that it isn't a childrens hospital and that they don't specialize in pediatric cardiology. Let me know...

  • #2
    Good morning Bert,

    I think children should be with a pediatric cardiologist rather than an adult cardiologist. I believe they look at disease differently. But when you mention Boston, are you talking about Dr. Maron? What is NEMC? If it was Dr. Maron you are speaking of......you are in the right place, but i'm just not certain what NEMC is.

    Karen

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    • #3
      nemc docs ets

      Hi,

      NEMC stands for New England Medical Center and is what is sometimes referred to as the Tufts Group (full name is Tufts-NEMC -spelled out). THat is where Drs. Martin Maron and Dr. Udelson are (and I know I'm forgetting someone, aren't I?). Dr. MM is not to be confused with his DAD, Dr. Barry Maron of the Minneapolis Heart Institute.

      As for your son ---how old is he? If he is 15/16+ then I wouldn't worry about it. If he is younger, then it is something to think about. Is this something the HCMA told you?

      Pediatric questions are beyond me as I'll never have kids (thanks, Coumadin).

      Knowing the T-NEMC team (and I do, at least a little bit), if they believe there are any pediatric concerns they can't address, then they will 1. tell you and 2. talk to however they need to talk to address it and/or 3. refer you to who can help. and 4. go ahead and ask them about a peds specialist and see what they say.

      take care,

      s

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      • #4
        Thank you!

        It is indeed Dr. Maron, Dr. Udelson and Dr. Link from the New England Medical Center. The issue was brought up to me by a hospital administrator down in Holyoke Ma who questioned why I went after a second opinion, after the first one had been done by a pediatric cardiologist at Dartmouth Hitchcock in NH.

        In any event, from what I hear and read I have no reason to doubt the team in Boston and we are determined to stick with them. We're going back for more tests this coming week because of a history of high blood pressure, and another echo in April. His case is so uncertain (upper normal measurements according to Boston) that it makes it even more difficult.

        I'm hopeful that we're in good hands, and that they'll come to a decision. From what this board tells me, I have no reason to doubt them. Incidently, why didn't Dartmouth do echos on my wife and I? I know it's after the fact, but that was one of the first things that NEMC did.

        Thank you.
        Bert

        Comment


        • #5
          because...

          Dear Bert,

          Well, I'll tell ya---just because someone is a pediatric cardiologist, it doesn't make them an HCM-specialist pediatric cardiologist.

          I think you know the answer to your question.

          keep us posted,

          S

          Comment


          • #6
            Dear Bert,

            I'm still crossing my fingers for you. By the way, does Johnathan still feel well? You said before he didn't have any symptoms. I hope it continues to be that way.

            Reenie
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

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            • #7
              Jonathan is feeling well

              Dear Reenie,

              Jonathan is feeling great and has no symptoms so far. He's growing impatient though and has had enough. Last hockey game today, thank god! Spring can't come soon enough. Thank you for asking.

              Bert

              Comment


              • #8
                Bert,
                I do think your in good hands and also must tell you what a wonderful advocate you have been for your son. You have really uncovered every stone to find the best care for him. Your previous posting asked why the 1st center did not echo you and your wife, just so your know this was one of my BIG clues that a speciality center would be a good idea! Centers who do not see a great deal of HCM sometimes miss the easy stuff, like screenings. In your case your son appears to be the only one with HCM (and maybe not??) so it make the case far more complicated then a family history of HCM because we are still not sure that this is HCM at all.
                RE the Peds card. if the team felt a peds person was needed they would bring one into the picture for you at NEMC-TUFTS.

                Best to all!
                Lisa
                Knowledge is power ... Stay informed!
                YOU can make a difference - all you have to do is try!

                Dx age 12 current age 46 and counting!
                lost: 5 family members to HCM (SCD, Stroke, CHF)
                Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                Therapy - ICD (implanted 97, 01, 04 and 11, medication
                Currently not obstructed
                Complications - unnecessary pacemaker and stroke (unrelated to each other)

                Comment


                • #9
                  Thanks Lisa

                  I knew I could count on you for an uplifting response.

                  My wife and I have decided that the team at NEMC was going to be the place for us and that we were done running around. We have closed the "lid" on Dartmouth, not because we didn't like their diagnosis but because of their lack of compassion displayed towards a 15 year old. You wouldn't have believed how pretentious this pediatric cardiologist was.

                  Anyway, we're going to Boston tomorrow, per Dr. Maron's request for a renal ultra sound and some blood work. I'll keep you posted.

                  Good to hear from you.

                  Sincerely,
                  Bert

                  Comment


                  • #10
                    Thanks Lisa

                    I knew I could count on you for an uplifting response.

                    My wife and I have decided that the team at NEMC was going to be the place for us and that we were done running around. We have closed the "lid" on Dartmouth, not because we didn't like their diagnosis but because of their lack of compassion displayed towards a 15 year old. You wouldn't have believed how pretentious this pediatric cardiologist was.

                    Anyway, we're going to Boston tomorrow, per Dr. Maron's request for a renal ultra sound and some blood work. I'll keep you posted.

                    Good to hear from you.

                    Sincerely,
                    Bert

                    Comment


                    • #11
                      Glad to hear your on path toward answers... I must admit I am very interested in teh outcome on this one...YOu do have a unique situation.
                      All the best,
                      Lisa
                      Knowledge is power ... Stay informed!
                      YOU can make a difference - all you have to do is try!

                      Dx age 12 current age 46 and counting!
                      lost: 5 family members to HCM (SCD, Stroke, CHF)
                      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                      Therapy - ICD (implanted 97, 01, 04 and 11, medication
                      Currently not obstructed
                      Complications - unnecessary pacemaker and stroke (unrelated to each other)

                      Comment

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