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    Author: mary (208.132.95.---)

    Date: 05-09-02 11:36

    my 15 y.o. son has concentric cardiomyopathy with obstruction. His ejection fraction is in the 60's. I read in Dr. Maron's book that only 2% of people have concentric thickening. Does this type of cardiomyopathy progress differently than if only thickened in the septum? What should I be looking at in the reports to determine how my son's disease is doing. We have looked at thickness which was always 20 until the last time it was 24 mm.

    In addition....we have no idea where this disease came from. Everyone says it is genetic. My great-grandfather died at age 42 from supposed pneumonia...possibly could have been congestive heart failure. His brother died at age 15. No-one knows how. We even looked at the death certificates (late 1800's) and cause of death was not listed. This is what we know. My husband and other son have ventricle thickness of 12 mm which is the upper limits of normal. Not all my husbands or my siblings have been checked. Should our parentss have echos (they are all in good health at early 70's). It is such a mystery. Again, it is hard for me to see any genetic connection. Does hcm ever show up without a family history? Is there a blood test that my husband and I couldl have that could identify the gene and which family pool this is from.

    I also did get my son's pediatric records from when he was a baby. He had these shaking spells when he was about 4 months old. He had an EEG to rule out seizures, which was negative. He also had an EKG and I was told at that time that is was not normal but not to worry about it as it must be an aberation to my son. (guess I should have pursued that further, howeverr, we always trust our physicians). THe EKG did show left axial deviation. Does anyone know if this could have been an indication of hcm?

    We do not go back to our specialist (mayo) until sept. when he will need to be put asleep andd put into vfib and vtach to see if his icd functions. pretty scary.

    If anyone has any thoughts to my questions, I would appreciate it. Mary


    [Re: questions]

    Author: s. beckley -moderator (---.dsl.mindspring.com)

    Date: 05-10-02 02:14

    Dear Mary,

    You have a lot going on with your son's situation. Your husband's parents should be checked and all of his siblings. HCM would not have been listed as a cause of death for anyone untill the last 20 years, or even less, as it has gone long misunderstood or under other names, too. HCM can be carried and appear to skip a generation, when the gene is there but symptoms don't develop. If your husband has hypertrophy and you don't, well that is pretty good evidence of what side it is from. There are genetic tests but they are long and complicated --I believe.

    Since you are already going to the Mayo, you are in the best of hands. The HCM clinic there is one of the best (IMHO).

    I think the gang at Mayo could answer a lot of your questions about your son's previous history (I e-mail my people there and they are very nice about writing back) or you can call the HCMA office to talk to Lisa, too.

    take care,



    [Re: questions]

    Author: wendy (---.proxy.aol.com)

    Date: 05-13-02 19:44

    Dear Mary-

    My daughter is 4 years old. She will be 5 in June. She too has concentric HCM. I don't know much about this disease and I too continue to look for answers. My daughter was diagnosed at birth w/ a genetic heart defect- however it wasn't until This past October that she started to have problems. She was in severe congestive heart failure. Previous to October 2001, she was never on any meds. Now she takes Inderol, enelapril, and lasixs, which seem to be managing her heart failure. Her ped. cardiologist has been in contact w/ Dr. Maron-HCM specialist, but they don't really offer too much info to me, other then to say that she may at some point need a heart transplant, only time will tell. I too am ignorant to what the number mean. If you can help me out I'd like toi hear from you too. Just as you say that there is no apparent connection (genetic) w/ HCM and any other family members -the same is true w/ our family. We don't have anyone w/ know HCM. I have asked my peds. cardiologist about testing and he said that if we wanted to be tested that he would refer us, to have echos done. I have a 2 year old daughter and I am concerned about her too. Feel free to respond back to me, I'd love to chat as you are the only person that I've found w/ simular diagnosis. I hope your son is well and I will keep him in my prayers.

    NOTE: This is a post from the previous forum message board.