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Caitlyn's good appt.

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  • Caitlyn's good appt.

    [Caitlyn's good appt.]

    Author: Paul Murphy (---.dsl.mindspring.com)

    Date: 09-24-02 09:24

    Hello all,

    Our daughter Caitlyn celebrated her 13th birthday last week and the following day had a good appt. at the ped. cardiologist's. Her echo showed her gradient (at rest) to have a mean in the 20's and a peak of 60. She had been in the 80's mean six months ago, so I guess her meds are doing what they're supposed to do. She's now on 300 mg. of Verelan PM (the timed release Verapamil) at night. We were all very excited about the visit.

    Mom Elizabeth is going to THE SUMMIT in Minneapolis next week; are there many other HCMAers going?

    Paul

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    [Re: Caitlyn's good appt.]

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

    Date: 09-24-02 12:17

    Dear Paul

    Good for Caitlyn, glad to hear she is doing well. I'll be at the Summit. Since it is a doctor meeting, (not patient centered, not in English but in "doctorese") I don't know how many patients are going.

    S

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    [Re: Caitlyn's good appt.]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 09-26-02 18:01

    GREAT NEWS!!

    See you in MN!

    Lisa

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    [Re: Caitlyn's good appt.]

    Author: Millie (---.24.223.186.Dial1.Philadelphia1.Level3.ne)

    Date: 10-02-02 09:24

    I have a question for you. My son is 10 years old with HCM and he has been on verapamil 180 mg. since the inception of diagnosis. His gradient has always fluctuated anywhere from low 50's to 60's, even higher in the early stages of diagnosis. The gradient has never dropped as low as we like it to be. He also takes Nadolol (a beta-blocker). The combination of beta-blocker and calcium channel blocker has helped decreased his incidents of palpitations.

    I read in your email your daughter takes another form of verapamil (time-released). Here's my question: was she on the regular verapamil and they changed it to this time released form?

    I understand that the gradient fluctuates as it is the dynamic of the disease. However, I'd like to get some good news as you did with your daughter or feel some good progress. He has an appointment this month with his ped. EP/cardiologist and I'd like to talk to him about this. Can you reply to my email? Thanks.

    Millie

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    [Re: Caitlyn's good appt.]

    Author: Paul Murphy (---.dsl.mindspring.com)

    Date: 10-03-02 10:01

    Hi Millie,

    yes, Caitlyn was on regular Verapamil before the Verelan PM. Actually, when she was first diagnosed (about 13 months ago) they started her on just Atenolol but that didn't get the gradient to lower much. We were lucky that she was diagnosed, because her only symptoms (outside of a new murmur) was that she seemed to tire easily. They switched to the calcium channel blocker Verapamil a couple of months later, gradually increasing the dosage. Then in May she had a stress test and the gradient peaked at 225 mmHg. and it kind of freaked out her doctor (and us); he began suggesting a dual chamber pacemaker and we also heard that we should consider a myectomy because of such a high gradient. After more research, we opted against the pacing option as it seems to have very mixed results. A myectomy would have been the direction we were leaning IF she had been having more symptoms and so we decided to monitor her closely and bump up the Verapamil a bit more. That's when her doc suggested Verelan PM, a timed release version, and she's now at 300 mgs. (3 small capsules at bedtime). There is a convenience factor certainly in her only having to take it once a day. We know we are blessed in her lack of bad symptoms and in her easy tolerance of the different medicines she's tried. Like you said, gradients fluctuate, and I know that symptoms can change at any time, but we are thankful that she is currently stable. Participating in competitive sports is her only restriction.

    Not sure if all this is of any help, but I certainly wish you and your son all the best. Let me know what his doctor says...

    Paul
    NOTE: This is a post from the previous forum message board.

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