[Both boys have HMC]

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

Date: 06-09-02 21:20

Hi everyone,

I wanted to let you all know that my two youngest boys were seen by a pediatric cardiologist on Thursday. The doctor said he is not going to give them a diogniose of HCM yet because of labeling the boy and also if we want to get life insurance for them we will not be able to get it. Anyway he did tell me they both have mild hcm. He also don't want the boys to know, but told me to keep an eye on them as the youngest had a slight murmur and also has chest pains sometimes, but has been told he probably has asthma. The doctor wants him to use an inhaler and see if it helps when his chest hurts. I on the other hand don't think he has asthma because when they did the breathing test on him he really didn't show that he had asthma, but they put him on an inhaler anyway. He also takes Zyrtec-D for his problem with breathing. He said if the inhaler doesn't work then he is going to start him on medication. He had me make an appointment to see him again in a month. I really feel confident with this doctor. He has close family by marriage that have HCM. Oh, an he also wants to see my soon to be 18 year old son. him and my youngest both had echo's done several month ago and when the echo's were read they said both were normal, as it turns out the youngest's wasn't but of course it wasn't a pediatric doctor that seen them. I have wondered if my oldest doesn't have it to because of some things that go on with him.

Dora

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[Re: Both boys have HMC]

Author: karen (---.dyn.optonline.net)

Date: 06-10-02 06:33

My thoughts and prayers are with you Dora. I know exactly what you're feeling. I was saddened to hear about your boys. My husband was diagnosed at 16 and our children were followed since they were little. Our oldest was diagnosed at 19 years old and is doing well. Our 16 year old son appears to be following in her footsteps as far as... first a floppy mitral valve was noted, to a true prolapse with MR to a suspicious looking septum. Our daughter for 2 years had the appearance of thickening yet the numbers were within the range until March. Last year we were told our son had the same suspicious look, he goes for a follow up in July along with our youngest.

I would get your 18 yr old son back especially if the one echo was read incorrectly and that he has some symptoms. Your other child is on Zyrtec-D, does the doctor want to continue with the D after seeing some mild hypertrophy? I'm not a big fan of decongestants to begin with, but especially with any cardiac issue. They have the potential to change or increase your heartrate as does caffeine.

Take care Dora, keep us posted.

Karen

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[Re: Both boys have HMC]

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

Date: 06-10-02 12:28

Dear Dora

I just want to say that Karen is right about the Zyrtec-D --stimulants are contraindicated for HCM patients. He should be on something like Allegra or Claritin that doesn't have any ephedrine or epinephrine in it.

While you are very comfortable with this doctor, I'm sure he would not mind if you took the kids to see an HCM specialist for a consult.

best of luck,

Sarah

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[Re: Both boys have HMC]

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

Date: 06-10-02 14:09

Thanks for replying,

I have to give his allerjest a call and let him know. As for taking him to a specialist I have not found one close enough to go see them myself. Once I have my oldest checked my the pediatric and we find out his results then I would like to go see a specialist if I can find the closes one.

Dora J.

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[Re: Both boys have HMC]

Author: Lisa Salberg (208.47.172.---)

Date: 06-10-02 15:25

Dora,

I can not say this strongly enough, you need to receive an opinion from someone who understands HCM. The information you have received is not entirely consistent with the medical literature, as you have stated in your first posting. Feel free to contact the HCMA and we can talk further.

Lisa Salberg

HCMA

973-983-7429

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[Re: Both boys have HMC]

Author: Martha (---.eonet.net)

Date: 06-19-02 21:02

I take Zrytec but not Zrytec D. What's your opinion on that? Claritin

wasn't helping but the cardiologist knew I was taking Zrytec.

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[Re: Both boys have HMC]

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

Date: 06-19-02 23:34

M

Read the ingredients for zrytec regular. If it has any ephedra, ephedrine, or epinephrine then it is bad as those are all stimulants.

Sarah