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Tommy, sudden death 11/04, siblings tested today


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  • Tommy, sudden death 11/04, siblings tested today

    Tom died of HCM 11/14/04. He had no symptoms. He was not a athlete. He was 11 years old. Tom has 2 brothers and 1 sister. Bryan age 14 was tested and his tests came back clear. Lexie and Lane are Tom's 1/2 siblings. They were tested today. Lexie age 4 tested clear. Lane age 6 months had the echo done 1st. Everything came out normal. Then he had the ekg. The test showed a possibility of left ventricular hypertrophy. We had the same ped. cardiologist Dr. look at the results and he told us they were normal and that the abnormal reading was do to the fact that he was moving around and not to worry.
    The Dr. also told us that we should not worry because if they didn't show anything now they probably would never develope the disease. He told us to get the kids tested in 5-6 years again to be safe. Is this correct? How accurate is the genetic testing? Could we all be tested and have peace of mind? There is no family history of HCM. Could HCM be a spontaneous mutation in my son Tom?
    Tommy was my son, a brother and a great person. He will be missed every day. I hope that HCM will someday be as well known as other diseases and that a cure will then be found. Our pain will last an eternity. Our Love for Tommy will keep us strong.

  • #2
    Well I'm glad they're all clear for now. The little ones probably don't need to be tested for a couple of years or so, this usually shows up around puberty. Bryan should be tested annually til he's in his mid 20's. It's not unusual for the EKG to look strange on small kids because it's set up to read adult signals.

    That being said, I have a serious problem with the doctor telling you that since they all screened clear for now they will probably never develop this disease. That's completely untrue. Since HCM usually, but not always, manifests during puberty, most people show no hint at all of what's to come until the mutation starts to do its work. There are even documented cases of people being screened periodically and not being diagnosed until they're 50+ years old. I've heard other doctors say, "Once clear, always clear" and it's just not true.

    Please give Lisa a call when you feel up to it. She can discuss this and more with you. 973-983-7429


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


    • #3
      I am very sorry for your loss. I know your pain has no words to explain it, I know the void is great, but please know that your loss is our loss too.

      We will be here today, tomorrow and months down the road. Tommy is a treasure to us all and the world lost out by not having a chance to get to know him. I can see he was very loved and we know he will be very much missed.

      Please give the office a call and we can talk about screening your children in the future.

      Wishing you peace,
      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)


      • #4
        I want to apologize for sounding harsh. I cried when I read your post of losing Tommy. I have a son the same age and I can only imagine what you're going through. We're here for you any time you're ready to share more with us.


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


        • #5
          I can't tell you how sorry I am for the the loss of your son. I wish I could convey how much I wish you weren't going through this right now.

          I, also, hope that this disease will become better known, so that perhaps other sons, daughters, sisters, brothers, mothers, fathers... and families, can be spared from going through what you are going through.

          I hope that this forum will help you to find the answers you need.

          Most sincere wishes to you and yours,



          • #6
            My prayers are with you!

            I am so sorry for your loss! My son James is 11 years old now and has just been diagnosed. My daughter was in a horrific car wreck in September and had little hope of survival. I thought I had lost her. Amazingly through much prayer she survived.

            Since my ex-husband was diagnosed in 1996, we have been getting the kids tested every year. I would just rather be safer than sorry. With this disease there is really no room for err. James has been tested since he was 4 years old. If your insurance will cover it, I would definitely do that. I have had one doctor that prefers every two years and one that likes every year.

            I will be thinking about you and pray you get lots of support! Janet
            My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.


            • #7
              my heart breaks for you and your family.I can only imagine the terrible pain you must be going through and you have my deepest condolences. I also have a young son 9 yrs whom just had an echo done,he has a murmur but so far clear but I need tobring him in annually. I will pray for you daily sincerely mike ob
              One day at a time.


              • #8
                So sorry to hear of the loss of your son Tom. You and your family are in our thoughts and prayers.

                It sounds like you may have been given some incorrect info, I know Lisa and the others can help clear things up for you. Take care, and know you are in our thoughts. Big hug.

                It's not what you gather, but what you scatter that tells what kind of life you have lived.

                Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


                • #9
                  I too lost a son from HCM. I know the pain you are going through and the questions you may have. I lost him 10 years ago, but I still feel the emptyness.

                  My prayers are with you, your family and your son, Tommy.


                  • #10

                    I am very sorry to hear of the loss of your son, Tommy. I hope that you will give Lisa a call when you can. I know that she will be of great help to you on many levels as you try to find your way through this.

                    Please take care, and let us know if there is anything we can do for you.

                    "Some days you're the dog... some days you're the hydrant."


                    • #11
                      I am very sorry for your loss.

                      I am glad that you have found this site and I hope it is a comfortto you to share with those who truly understand.


                      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


                      • #12
                        I too am very sorry for your loss, my 28 year old son haas HCM also and i know what it would do to me to lose him, but i wanted to welcome you to our site and know we are here for you

                        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


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