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16 month old with progressive HOCM

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  • 16 month old with progressive HOCM

    Hi everyone -

    My name is Stephanie and my daughter, Emma, is 16 months old and has been diagnosed with progressive HOCM. I'm a relatively new member here, and posted an intro message in the general forum about a month ago. I just recently realized I might be better off introducing myself here (duh!).

    Emma was diagnosed at 5 months by a pediatric cardiologist after a heart murmer was detected by her pediatrician. At the time her condition was mild and the hope was that it would stay that way. Unfortunately her most recent echocardiogram showed a significant increase in the thickening of the septum and the obstruction caused by it. The cardiologist has started Emma on Verapamil in hopes that it will reduce the degree of obstruction; but we were told that this is a possibility, not a guarantee. I fear that she is headed for heart surgery, and I worry about even worse things. Everytime I go in to check on her when she is sleeping, the first thing I do is look at her chest to make sure she is breathing.

    I am in the process of trying to get Emma in to see a specialist here in the Boston area, but it seems as though they don't have a lot of experience with children her age since this disease is very rare in young children. I go back and forth between feeling hopeful and in control of the situation, and defeated and overwhelmed. I'm sure you have all been there. Today is one of my overwhelmed days. I just want to make sure Emma is getting the best care she can.

    I have heard from a couple of members in similar situations and hope to "meet" others. Thanks for listening.

    Stephanie

  • #2
    Re: 16 month old with progressive HOCM

    Hi Stephanie,
    I posted a response to you under your older post so I wasn't sure you saw all the responses. If you have lost track of it , it is under the General forum and then New Member. Others will post here as well.
    I was just not sure you were familiar with all the trails . I sometimes used to get lost here. Fortunately not any more.
    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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    • #3
      Re: 16 month old with progressive HOCM

      Stephanie, I hope you are soon able to talk with Lisa, if you haven't already done so. I know what those overwhelming days are like, they are so exhausting and you still have trouble sleeping that night, regardless of how tired you are. I'm sure you will soon have some responses from others who have "been there". I will keep you and your family in my prayers. Enjoy little Emma, it's so exciting to watch them as they learn and do wonderful new things daily. Linda

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      • #4
        Greatful, but scared

        Hi -

        Just wanted to let you know that Emma is due to see the pediatric cardiologist at NEMC in Boston on Tuesday and that a member of the HCM Clinic there will be consulting.

        While I wish the clinic itself could take her on as a patient, this seems to be the next best thing. Emma also has a cardiologist at Children's Hospital that I really like, so I'm hoping we can keep him in the mix as well.

        I am anxious to hear what these new doctors have to say. On the one hand, I am greatful to have people who really know this disease working with us, but at the same time, I am afraid of what they might tell us.

        I guess we'll know more in a couple of days.

        Stephanie

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        • #5
          Re: 16 month old with progressive HOCM

          Stephanie, I'll be thinking of you and praying for Emma. At least you know you're going to the best place you can be.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: 16 month old with progressive HOCM

            Stephanie,
            I am so happy you are taking Emma in to see the docs at NEMC. I do not think there could be a better group of specialists in this part of the country. We are very fortunate to live so close to Boston.

            I have researched this disease pretty well and been to several top rate hospitals in Boston so I know although the worries you have are real you will at least have the best care possible for little Emma. They work as a team at NEMC so everyone concerned is kept in communication. All the bases will be covered.

            Please know we are thinking about you, and Emma. Keep us posted.
            Pam

            P.S. One of my dearest friends and former college room-ates; Karen lives in Walpole, she runs a daycare out of her home. Been there all her life.
            Small new england towns , small world.
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

            Comment


            • #7
              Re: 16 month old with progressive HOCM

              Good luck with your appointiment - Give Emma a big hug from all of us.

              Best wishes,
              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)

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              • #8
                Re: 16 month old with progressive HOCM

                Stephanie

                Again give Emma a great big hug from all of us here at the HCMA

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Re: 16 month old with progressive HOCM

                  stepanie, I read your post,and I will be praying for your little Emma daily.take care mike
                  One day at a time.

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