[6 yr old son with HCM - parents need support]

Author: Suzanne (---.stic.net)

Date: 06-04-02 15:05

Our son was diagnosed with HCM when he was 9 months old. He still had a murmur at 6 mos. so we were automatically referred by his pediatrician. He is now 6 years old and due to the lack of signs / symptoms and his excellent function reports from his every 6 month echos we find it hard asking for "support" or for referrals to electrophysicists or HCM specialists. His EKG voltage is off the graph and uneplainable by his cardiologist who says the disease and voltage don't usually correlate. My dad and I passed the disease on to Stephen and we both have the mirror image of his EKG voltage which would seem to be a correlation of the disease to me. (Neither my dad nor I have excessive thickening.) I notice the dizzy and strobe effect about once a month - many years ago misdiagnosed as aura prior to migraines even though I repeatedly explained I never get the headache afterwards. We could also use other's input on having more children when the risk is 50/50 for each birth. We have another son without the disease.

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[Re: 6 yr old son with HCM - parents need support]

Author: Colleen (---.client.attbi.com)

Date: 06-04-02 17:28

What do you mean strobe effect?

I was getting migraines last summer before I was told I have HCM and my optometrist (sp?) said it was from an incorrect prescription for my contacts.

Before I got the headache I would get really strange distortions to my vision. The best way I can discribe it is incongruities in my depth perception and this strange strobe like spotting in my vision. Just wondering, because it happened again last weekend out of the blue. Is this related to my HCM or am I just completely starting to fall apart?

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[Re: 6 yr old son with HCM - parents need support]

Author: Suzanne (---.stic.net)

Date: 06-04-02 21:27

I don't know about that since you actually get the headaches with the aura. If I lie down and put my feet up to force blood to my head I get a headache, but not otherwise. At one time I thought it was low blood sugar and fatigue. It may have nothing to do with HCM. Yes, like Vaseline spots following my vision whichever way I look. The reason I wrote of that was someone else included the effect in their message, if you want to look that up (can't remember which message).

How did you find out you had HCM?

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[Re: 6 yr old son with HCM - parents need support]

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

Date: 06-04-02 21:51

Dear Suzanne

Please call the office at 973-983-7429 to get the names of HCM specialists for your son and yourself.

There has been some correlation between HCM and migraines, but I don't think anyone's really figured it out yet. I have heard that it is possible to have migraines without the pain, however if you are dizzy and having visual disturbances together, I'm worried that you may be having some heart-related issues that should be looked at ASAP. Please talk to your doctor about them, and the HCM specialist.

Are you medicated? Your son?

Sarah

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[Re: 6 yr old son with HCM - parents need support]

Author: lisa (208.47.172.---)

Date: 06-05-02 11:05

Hello,

Please do call the office, I would be happy to help answer any question I can and help you find specialists.

Best wishes,

Lisa Salberg

HCMA

973-983-7429