[CHILD WITH HCM]

Author: TAMMY (---.cache.pol.co.uk)

Date: 09-25-02 13:32

I have a 7 year old daughter with HCM it was diagnosed after having her appendix out. It took the local hospital a year of having her in and out of hospital before they would take it out. My husband and myself and my son have all been checked out and none of us have it, it just all seems funny that it all started at the same time . Ive been told this condition can be caused by a bacteria from the appendix. I would like any one who have had the same happen to their child or family member or any other parent with a child in the same situation. My daughter is now on medication as her symptoms are bad and her active life has had to slow down.

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

[Re: CHILD WITH HCM]

Author: Reenie Smith (---.snbrca.adelphia.net)

Date: 09-25-02 14:00

Tammy,

I don't have any information for you, but wanted you to know you and your family are in my thoughts.

Reenie

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

[Re: CHILD WITH HCM]

Author: Sarah B.-Board Moderator (---.client.attbi.com)

Date: 09-25-02 16:36

Dear Tammy,

You are more than welcome here, but there is also a cariomyopathy association in the UK at cardiomyopathy.org that you should check out.

As for your daughter, please talk to the UK org about finding a UK specialist for her to make sure she is getting the best treatment possible. It doesn't sound like your local people are reliable.

There is a viral cardiomyopathy, and there is endocarditis infections that can damage the heart, or perhaps it was a genetic fluke and she is the first. I really can't say from here. This would be another reason to see a specialist and get that sussed out.

There are great medications and treatments available that should help your daughter, regardless of the cause.

all the best,

Sarah

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

[Re: CHILD WITH HCM]

Author: Karen (---.ym.rnc.net.cable.rogers.com)

Date: 09-27-02 22:50

Hi Tammy,

My brother has the same disease. He was 20yrs old when he was diagnosed. He was out with his friends and just passed out and went into a sezure. So he went in the hospital and had open heart surgery. They cut off some of the heart muscle. Now its 6yrs later and he was playing ball hockey and passed out. We took him to the hospital and he has been in there a week ... they are doing all tests on him. Yesterday the doctors found out that his heart was weak. I don't fully understand all of this., but what they said was that we have 2 wire like things going through our hearts. One of them was cut from my brother's earlier operation 6ys ago and the other wire is very weak and cannot work on its own. The reason my brother passed out was because of this and he also has an iregular heartbeat. So today the doctors decided to operate on him and put a pacemaker in him. So now he is 26yrs old and has to get cut open every 7-10yrs to change the battery of his pacemaker. Its so hard for someone so young.

I am not sure what symptoms if any you daughter has. But its such a scary thing to deal with. I hope everything goes well with her....

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

[Re: CHILD WITH HCM]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 09-29-02 00:21

Dear Tammy,

If your brother is having ventricular tachycardia (a specific type of arrhythmia) please make sure they are installing a dual ICD/pacemaker. The ICD part (implantable cardioverter-defibrillator) will shock his heart back to normal if it tries to go haywire.

It sounds like he is a very strong candidate for that.

good luck and let us know how you are all doing,

Sarah

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

[Re: CHILD WITH HCM]

Author: Lisa Salberg (208.47.172.---)

Date: 09-30-02 16:11

Re your child. HCM is genetic, not bacterial. It is odd that they were uncovered at the same time, yet I can not see that one "caused" the other.

RE your Brother - If he has not been seen by an HCM specialist.. you may want to do that sooner than later.

Best to all!

lisa