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Should kids see an HCM specialist?

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  • Should kids see an HCM specialist?

    [Should kids see an HCM specialist?]

    Author: Blaine (---.chartersc.net)

    Date: 06-15-02 23:03

    Hi all!

    I am 42, and have HCM (obstructive). My question concerns my two children, ages 7 and 3. Is a pediatric cardiologist adequate to test for HCM, or do I need a specialist? Neither child appears symptomatic, although my daughter, age 3, is showing a slight murmur. My family history is largely unknown at this time, although my Grandfather died suddenly in his forties (no autopsy).

    Thanks in advance for any input you can gve me!

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    [Re: Should kids see an HCM specialist?]

    Author: Board Moderator: Sarah Beckley (---.dialup.mindspring.com)

    Date: 06-16-02 03:46

    Dear Blaine

    Your children should be getting echos every 12-18 months regardless of who does it. If they seem to be showing signs or if the echos are suspicious, then absolutely go with the specialist. The HCMA office can help you find someone. 973-983-7429.

    Furthermore, in case you are not seeing a specialist, I strongly recommend it and I also recommend having everyone evaluated for an ICD --just to be on the safe side. I say this only b/c having had a sudden death in the family tends to be red flag for considering an ICD (implantable defibrillator).

    keep us posted

    Sarah

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    [Re: Should kids see an HCM specialist?]

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

    Date: 06-16-02 11:39

    Hello,

    I will share my experience about my two boys. They are 11 and 13. In February I had an echo done on the 11 year old and when it was read they said it was normal. When the pediatric read it he told me he has mild HCM. The 13 year old also has mild HCM. The 11 year old had a slight murmur, but the 13 year old didn't. Both were diagonice with innocent murmur's as young baby's, but the only time they could be heard was when they were sick.

    The doctor did not officially diagonice them with HCM due to the labeling and because you can not get life insurance for them after they are diognoice. So I am looking into getting them life insurance.

    The 11 year old sometimes has tightness in his chest he was told several years ago that he had asthma even though when they did the breathing test he passed. They put him on an inhaler, which he used sometimes but it didn't seem to help. The pediatric wants him to try the inhaler again to see what happens and then wants to see him in a month. He tried the inhaler twice and it accually made it worse. Well there you have it.

    Dora J

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    [Re: Should kids see an HCM specialist?]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 06-16-02 12:19

    Blaine,

    I have obstructive HCM cause unknown with no history of sudden death. Additionally, I have one sister who tested ok. I have 2 sons age 7 and 5. Our GP decided we should test them when they started sports. Neither has HCM now. We have been told that HCM does not always show-up until the teens and that it might not be seen until 30. I'm 44 now, I have had a murmur as long as I have been tested (at least 15 years), but HCM was never diagnosed until an episode of syncope 18 months ago.

    The good thing is now you have a baseline to go from and compare against in the future.

    Jerry

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    [Re: Should kids see an HCM specialist?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 06-16-02 18:40

    Just a quick addition to Sarahs posting - The question of how often to screening of children is a hard, if they are under age 10 it is rare (not impossible) to come up with a diagnosis. Those of you who have children under 10 with HCM may think this statement is incorrect, however in the medical data, it is "rare" to see kids under 10 with HCM. Therefore, I think at this time we are better off looking a kids 10 and under in one group and 10 and older in the second group.

    In the under 10 group - a base line screening at the time other family members are diagnosed OR when they are around 5 years old OR IF any murmur or symptom developes

    10 and over- every 12-18 months until age 20-25

    After age 25 I would encourage a cardiac check up every 5 years just in case there is a late onset.

    THESE are NOT official guidelines, simply suggestions.Any questions feel free to call the HCMA.

    Best wishes,

    Lisa Salberg

    HCMA

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    [Re: Should kids see an HCM specialist?]

    Author: Patricia Grall (---.dwave.org)

    Date: 06-17-02 09:34

    Lisa your guidlines are the very same given to me by two different cardiologists that specialist with HMC.

    My sister had a heart murmer since birth and was diagnosis at age 40. She is 58 and still has no symptoms. She is overweight but takes no medications for this at all. She has a son whom has tested positive for HMC. Our family history is unkown other than that we know some have died from heart attacks.

    I, on the other hand, had SOB with exertion and climbing stairs starting at the age of 38. After four years of testing by Internal medicine doctors I went to my sister's cardiologist whom made the connection between the two of us. I never had an audible mummer and just recently had the ablation procedure due to a very large septum. My point being, you do not need to have a murmer. Our son also has the problem and is being tested every five years. He is 32, without symptoms,

    and neither of the sons have a audible mummer but show slight growth in the suptum.

    Thanks again for the great guidlines.

    Patricia Grall

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    [Re: Should kids see an HCM specialist?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-17-02 11:46

    Murmurs do not equal HCM and lack of a murmur does not mean someone does not have HCM, you are 100% correct Patricia.

    This is a large problem in detecting the condition. Those with no obstruction will not normally have a murmur, only about 25-30% of those with HCM have obsturction.

    Lisa

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    [Re: Should kids see an HCM specialist?]

    Author: Blaine (---.chartersc.net)

    Date: 06-17-02 23:41

    Thanks for everyone's input. We'll go ahead and do the tests just to be on the safe side. If everything looks normal, we'll test every year or so after the kids reach 10. Sure is nice to share a lot of thoughts on the subject.

    Incidentally, Sarah, I have had an ICD since Oct., 1995. I had serious arrhythmias. I take 160 mg of sotalol twice a day. I do need to see an HCM specialist, and will call the office soon.

    Thanks!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Should kids see an HCM specialist?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-18-02 11:24

    HI Blaine -

    I always think it is a good idea for those with HCM to see a specialist. While you already have an ICD, we know you are protected against sudden death to the best of your ability, however the next issue to deal with is quality of life - are you maximized? Will a different treatment protocol improve your functional ability? Can you decrease some meds, should you increase meds? these are the items to discuss with an HCM specialist.

    Best wishes,

    Lisa Salberg

    President

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Should kids see an HCM specialist?]

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

    Date: 06-28-02 00:12

    Blaine,

    I certainly think you should have your kids see a ped cardiologist. I am 18 and still go to the ped card that I went to when I was first diagnosed. I tried a few other doctors some specialist, but even one of the specialist told my mother that a pediatric doctor would be better for a childs heart because there are a few differences, whatever you decide make sure you get your kids tested.
    NOTE: This is a post from the previous forum message board.

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