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4 Yr. Old Angel With Septum That Is Growing...

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Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
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  • 4 Yr. Old Angel With Septum That Is Growing...

    Hi all! I haven't posted in along time.. (and I usually post in the "health and recreation" section). Recently I received news that my youngest who also has HCM has had additional growth of his septum. It was 18mm when he was about 2 and in the past year has grown to 25mm (my septum is "only" 21mm). Any advice? Anyone know what the chances of his septum continuing to grow? Is he too young for a defib? I love the little guy and would sure hate to lose him at such a young age. His name is Caleb, please keep him in your prayers and let me know if you have any advice/recommendations... Living with HCM myself is easy. Living with the fact that my little boy has it is hard!

  • #2
    Re: 4 Yr. Old Angel With Septum That Is Growing...

    Celtic,

    Please call Lisa at the office on Tuesday (2/24). She should be able to answer your questions and guide you in the right direction. The phone number is 973-983-7429. She will be in the office from 9 a.m. to 5 p.m. Eastern time.

    We look forward to hearing from you on Tuesday.

    Kelly
    HCMA staff
    Life is 10% what happens to you and 90% what you do with what happens to you.

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    • #3
      Re: 4 Yr. Old Angel With Septum That Is Growing...

      Hi Celtic,

      My name is Michelle and I'm the mom to two kids with HCM. Krista is now 12 1/2 and Tyler is 9 1/2. They both were diagnosed at birth. I didn't, unfortunately, have this support group in the beginning or all the answers that people have now from information when my kids were going through the thickening septum time. My daughter had a myectomy at age 5. I can't remember the size of the septum, but I can remember the EFF was 4.2 which is really high. Before that though, Dr. would try increasing the meds and checking her every few months. Maybe that is what your doctor will do. My son had the same thing but at age 3. I don't know if this helps or not, but I remember being very scared and worried too. You at least have more information than I ever did in the beginning. It really helps to know what to expect or what other people have experienced. I wish I had at the time.

      My kids septum's go up and down with each 6 month appointment. We increase meds and go back, the next time its down again. It fluctuates. Also one time my son had been running around the waiting room and in an out of the check-up room, that day his septum was larger. Dr. said it could have been because he was running around, since the next check-up it was back down again.

      I hope some of this eases your worries. Take care.
      Michelle - mom to Krista and Tyler both HCM
      Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
      Tyler surgery: 1/98 myectomy

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      • #4
        Re: 4 Yr. Old Angel With Septum That Is Growing...

        That is a large septum on a little one and something that should be evaluated by a specialist sooner than later.

        Give me a call and I can offer some options to think about.

        Be well,
        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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        • #5
          Re: 4 Yr. Old Angel With Septum That Is Growing...

          Dear Celtic,

          I just wanted you to know I'm thinking about you and that Caleb is in my prayers. I haven't gone through what you're going through now, but I worry every time my kids go for their screenings that something will be found. Your whole family is in my thoughts and prayers.

          Reenie

          PS: I also have a Caleb.
          Reenie

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

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          • #6
            Re: 4 Yr. Old Angel With Septum That Is Growing...

            You have my prayers and support too. I understand completely and I too had a son with hcm and I wish I had other people like us out there to talk to. I would just make sure to get him to the doctors soon. keep me posted about how he makes out.
            Jen
            Jen

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