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[My 5month old daughter justt diagnosed]
Author: Stacy (---.dialsprint.net)
Date: 04-21-02 21:35
We just found out Friday our 5 month old daughter has hypertrophic cardiomyopathy. They admitted her into the hospital to run blood work. I am not really sure what they are looking for. The echocardiogram showed the wall is thicker than it should be and that her heart is also larger than it should be. The information sheet they gave us said there is no medication or surgerys that can be done. We are going to take her to MAYO. If anybody knows of any information we can access please let me know. Or if there are names of any doctors I would greatly appreciate it.
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[Re: My 5month old daughter justt diagnosed]
Author: Sarah Beckley (---.dsl.mindspring.com)
Date: 04-22-02 00:48
Dear Stacy,
The Mayo is the best. The head of the Hypertrophic Cardiomyopathy Clinic there is Dr. Nishimura, a very nice guy. I see Dr. Klarich when I go and I like her very much. You really can't lose with anyone in the HCM Clinic at the Mayo.
I would be very interested in seeing this "information sheet" your doctor gave you that doesn't seem to have any info on it --can you scan it and e-mail it to me? If you call the HCMA office, they will send an info packet on HCM to that doctor. There are many medications and some surgerys for HCM. Too many to list here.
Please call the HCMA at 973-983-7429 to get started learning about HCM. There is a book they sell on top of Lisa's endless free advice and the HCMA database of doctors. If there are pediatric HCM specialists better than the Mayo, Lisa will know.
I know this is all very scary and difficult, but there are many more options than your doctor knows about. Because she is so young, I don't know how much they can do or what medications are safe, etc, so I'm not going to list a whole bunch of stuff that isn't applicable. Talking to Lisa and the Mayo are your best bets for reliable info.
all the best,
Sarah
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[Re: My 5month old daughter justt diagnosed]
Author: cynthia (---.nas48.philadelphia1.pa.us.da.qwest.ne)
Date: 04-22-02 11:36
The pamphlet must be very old or simply incorrect. Surgery has been available to children for at least 25 years.
Good luck at Mayo and keep us updated.
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[Re: My 5month old daughter justt diagnosed]
Author: Stacy (---.tnt1.bismarck.nd.da.uu.net)
Date: 04-22-02 11:55
The information sheet is dated 1996-1997 University of Virginia. It says there are no medicines or surgeries that make this better. There are some medicines that may stop the heart rythym problems. Does anyone know if a large heart is also a symptom of this condition?
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[Re: My 5month old daughter justt diagnosed]
Author: Sarah Beckley (---.dsl.mindspring.com)
Date: 04-22-02 21:31
Dear Stacy,
Is this info sheet referring to enlarged hearts only? Then, technically, true there aren't any surgeries that make the heart smaller. There are surgeries to reduce hypertrophy, which is a thickness in the walls of the heart. HCM can cause thickness up the outside of the left ventricle, up the inside of same, up the middle of the heart wall in the bottom --the septum, and at the bottom of the left ventricle (the apex). Dilative Cardiomyopathy causes the heart to thicken all the way around the middle. But basically, yes, cardiomyopathy can enlarge the heart.
Research and treatments are moving pretty quickly in this field and I hope you have called the HCMA office to find the name of someone who is qualified to treat your daughter.
Please let us know how things go.
best wishes,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My 5month old daughter justt diagnosed]
Author: Lisa (---.dyn.optonline.net)
Date: 04-23-02 08:36
Stacey,
As we discussed last night it is important to finish all metibolic testing to rule out other disorders. However, if it is in fact HCM there are several treatment options available!
Your daughter has many options open to her get to the Mayo or Cleveland Clinic or to Dr. Jeffrey Towbin in Texas. They can help you best.
Best wishes,
Lisa Salberg
Author: Stacy (---.dialsprint.net)
Date: 04-21-02 21:35
We just found out Friday our 5 month old daughter has hypertrophic cardiomyopathy. They admitted her into the hospital to run blood work. I am not really sure what they are looking for. The echocardiogram showed the wall is thicker than it should be and that her heart is also larger than it should be. The information sheet they gave us said there is no medication or surgerys that can be done. We are going to take her to MAYO. If anybody knows of any information we can access please let me know. Or if there are names of any doctors I would greatly appreciate it.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My 5month old daughter justt diagnosed]
Author: Sarah Beckley (---.dsl.mindspring.com)
Date: 04-22-02 00:48
Dear Stacy,
The Mayo is the best. The head of the Hypertrophic Cardiomyopathy Clinic there is Dr. Nishimura, a very nice guy. I see Dr. Klarich when I go and I like her very much. You really can't lose with anyone in the HCM Clinic at the Mayo.
I would be very interested in seeing this "information sheet" your doctor gave you that doesn't seem to have any info on it --can you scan it and e-mail it to me? If you call the HCMA office, they will send an info packet on HCM to that doctor. There are many medications and some surgerys for HCM. Too many to list here.
Please call the HCMA at 973-983-7429 to get started learning about HCM. There is a book they sell on top of Lisa's endless free advice and the HCMA database of doctors. If there are pediatric HCM specialists better than the Mayo, Lisa will know.
I know this is all very scary and difficult, but there are many more options than your doctor knows about. Because she is so young, I don't know how much they can do or what medications are safe, etc, so I'm not going to list a whole bunch of stuff that isn't applicable. Talking to Lisa and the Mayo are your best bets for reliable info.
all the best,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My 5month old daughter justt diagnosed]
Author: cynthia (---.nas48.philadelphia1.pa.us.da.qwest.ne)
Date: 04-22-02 11:36
The pamphlet must be very old or simply incorrect. Surgery has been available to children for at least 25 years.
Good luck at Mayo and keep us updated.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My 5month old daughter justt diagnosed]
Author: Stacy (---.tnt1.bismarck.nd.da.uu.net)
Date: 04-22-02 11:55
The information sheet is dated 1996-1997 University of Virginia. It says there are no medicines or surgeries that make this better. There are some medicines that may stop the heart rythym problems. Does anyone know if a large heart is also a symptom of this condition?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My 5month old daughter justt diagnosed]
Author: Sarah Beckley (---.dsl.mindspring.com)
Date: 04-22-02 21:31
Dear Stacy,
Is this info sheet referring to enlarged hearts only? Then, technically, true there aren't any surgeries that make the heart smaller. There are surgeries to reduce hypertrophy, which is a thickness in the walls of the heart. HCM can cause thickness up the outside of the left ventricle, up the inside of same, up the middle of the heart wall in the bottom --the septum, and at the bottom of the left ventricle (the apex). Dilative Cardiomyopathy causes the heart to thicken all the way around the middle. But basically, yes, cardiomyopathy can enlarge the heart.
Research and treatments are moving pretty quickly in this field and I hope you have called the HCMA office to find the name of someone who is qualified to treat your daughter.
Please let us know how things go.
best wishes,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: My 5month old daughter justt diagnosed]
Author: Lisa (---.dyn.optonline.net)
Date: 04-23-02 08:36
Stacey,
As we discussed last night it is important to finish all metibolic testing to rule out other disorders. However, if it is in fact HCM there are several treatment options available!
Your daughter has many options open to her get to the Mayo or Cleveland Clinic or to Dr. Jeffrey Towbin in Texas. They can help you best.
Best wishes,
Lisa Salberg