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[My 13 year old son]
Author: Susan Dearinger (---.cox-internet.com)
Date: 08-07-02 18:28
Please read...
In April of this year, my husband was told he had Left Ventricular Hypertrophy, not HCM. The electrophysiologist said he did not have an arrhythmia. We were told we did not have to have our children screened.
Now my 13 year old son told me that his heart has been beating hard for the last two days. I promptly took him to the pediatrician who said his heart is beating irregular and her ordered an EKG and "rhythm strip". This doctor called it arrhythmia and we will see a pediatric cardiologist after we get the results of the tests. I told the pediatrician of my husband's heart situation. I am now completely and utterly terrified. My precious son loves sports. Are arrhythmias common with HCM? Any input? Can anyone give me any hope at this point? I would appreciate any input.
Thanks,
Susan Dearinger
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[Re: My 13 year old son]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 08-07-02 20:04
Dear Susan
The best thing for you to do right now is to call the HCMA office at 973-983-7429 to get the name of an HCM specialist --adult and pediatric. HCM specialists are electrophysiogists and will be able to make a definitive diagnosis (or should be) about both the men in your life --whether it is HCM or something else. HCM is often misdiagnosed, which is why it is important to see someone who will know it when they see it.
Please read the rest of this web site's info about HCM as it will answer a lot of your questions. I am not sure what you mean by "hope" --HCM is not a death sentance and it is not an automatic "no sports" sentance either. There are ten (at least) different genetic strains of HCM and the only way to know what your son can and can't do is to have him evaluated by a specialist to determine what he has exactly and an appropriate treatment plan.
We all know how scary this part is --what is it and what can we do and what does this mean and what happens next, etc. However, this is often the worst part and there are many treatments for LVH and HCM and most of us live full (and even active) lives.
hang in there and call the office to get started,
Sarah
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[Re: My 13 year old son]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-07-02 20:30
Susan,
It sounds very much like this could be HCM in your husband and son. Look at the good side of this (yes there is a good side), you have found out it is there and now can take action.
Yes, arrthymias are very common in HCM.
Please call the office we can talk more and help you get to someone who can evaluate father and son.
Best wishes,
Lisa Salberg
President
HCMA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Thank you so much]
Author: Susan Dearinger (---.cox-internet.com)
Date: 08-07-02 22:21
Dear Lisa and Sarah,
Thank you both so much for your quick responses. I talked to you, Lisa, at length back when my husband was first going through this (probably in May?) and we never got to go to a specialist due to finances. The doctor we saw in Paris, Texas was "ok", but the doctor in Dallas we saw was really great. He is an electrophysiologist. He did say, however, that this in not IHSS, HCM, or whatever else they call it. Our ped. doctor is recommending a pediatric cardiologist. (I think I may have already mentioned that) I will try to call asap to see if you have any information on the Dallas pediatric cardiologists. Lisa, do any of your children have an ICD?
Your words about it not being a death sentence and sports might not be out were very comforting, Sarah.
Thanks again and you'll be hearing from me really soon.
Susan D.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Thank you so much]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-08-02 09:53
Susan,
My daughter has not been diagnosed with HCM. My father and I have ICD's and others in my family do not.
PLEASE get to a specialist, I am very concerned - call me I will get someone as close to you as possible!
Lisa
Author: Susan Dearinger (---.cox-internet.com)
Date: 08-07-02 18:28
Please read...
In April of this year, my husband was told he had Left Ventricular Hypertrophy, not HCM. The electrophysiologist said he did not have an arrhythmia. We were told we did not have to have our children screened.
Now my 13 year old son told me that his heart has been beating hard for the last two days. I promptly took him to the pediatrician who said his heart is beating irregular and her ordered an EKG and "rhythm strip". This doctor called it arrhythmia and we will see a pediatric cardiologist after we get the results of the tests. I told the pediatrician of my husband's heart situation. I am now completely and utterly terrified. My precious son loves sports. Are arrhythmias common with HCM? Any input? Can anyone give me any hope at this point? I would appreciate any input.
Thanks,
Susan Dearinger
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My 13 year old son]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 08-07-02 20:04
Dear Susan
The best thing for you to do right now is to call the HCMA office at 973-983-7429 to get the name of an HCM specialist --adult and pediatric. HCM specialists are electrophysiogists and will be able to make a definitive diagnosis (or should be) about both the men in your life --whether it is HCM or something else. HCM is often misdiagnosed, which is why it is important to see someone who will know it when they see it.
Please read the rest of this web site's info about HCM as it will answer a lot of your questions. I am not sure what you mean by "hope" --HCM is not a death sentance and it is not an automatic "no sports" sentance either. There are ten (at least) different genetic strains of HCM and the only way to know what your son can and can't do is to have him evaluated by a specialist to determine what he has exactly and an appropriate treatment plan.
We all know how scary this part is --what is it and what can we do and what does this mean and what happens next, etc. However, this is often the worst part and there are many treatments for LVH and HCM and most of us live full (and even active) lives.
hang in there and call the office to get started,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My 13 year old son]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-07-02 20:30
Susan,
It sounds very much like this could be HCM in your husband and son. Look at the good side of this (yes there is a good side), you have found out it is there and now can take action.
Yes, arrthymias are very common in HCM.
Please call the office we can talk more and help you get to someone who can evaluate father and son.
Best wishes,
Lisa Salberg
President
HCMA
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Thank you so much]
Author: Susan Dearinger (---.cox-internet.com)
Date: 08-07-02 22:21
Dear Lisa and Sarah,
Thank you both so much for your quick responses. I talked to you, Lisa, at length back when my husband was first going through this (probably in May?) and we never got to go to a specialist due to finances. The doctor we saw in Paris, Texas was "ok", but the doctor in Dallas we saw was really great. He is an electrophysiologist. He did say, however, that this in not IHSS, HCM, or whatever else they call it. Our ped. doctor is recommending a pediatric cardiologist. (I think I may have already mentioned that) I will try to call asap to see if you have any information on the Dallas pediatric cardiologists. Lisa, do any of your children have an ICD?
Your words about it not being a death sentence and sports might not be out were very comforting, Sarah.
Thanks again and you'll be hearing from me really soon.
Susan D.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Thank you so much]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 08-08-02 09:53
Susan,
My daughter has not been diagnosed with HCM. My father and I have ICD's and others in my family do not.
PLEASE get to a specialist, I am very concerned - call me I will get someone as close to you as possible!
Lisa