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Advice please! On son's treatment

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  • Advice please! On son's treatment

    [Advice please! On son's treatment]

    Author: Dee (---.jvl.wi.charter.com)

    Date: 11-27-02 06:57

    I need some advice about getting a second opinon for my son. Keep in mind that I tend to be an impatient "I'll do it myself" kind of person so that's why I'm asking for opinions from the experts here.

    My son was diagnosed with HOCM when he was 6 weeks. I don't have numbers or anything, but I've been told he has a "large" obstruction and moderate valve leakage but show's no signs or evidence of having arrythmias.

    When he was 1 1/2 he come down with endocarditis and suffered a stroke from it. After a couple of weeks in the hospital and a course of antibiotics thru a catheter and a little bit of therapy, he's completely recovered as far as we can tell at this point. He takes his beta-blocker three times a day. He's 3 1/2 now.

    Over the summer he has shown some signs of his heart function worsening, reaching a peak last week while fighting an illness. We did a 24hr Holter which was clear and had an echo last Friday which showed his gradient as "higher than I'd like to see it" according to his PC. Over the weekend thru today we've raised his Propranolol dosage up to 9 ML 3-times a day from 6 ML (he weighs ~30 lbs). He seems to be doing a little bit better energywise. When I talked to his cardiologist on Friday he said he would be calling Dr. Maron in MN and another PC at Texas Children's for advice/input. When I talked to him today he hadn't talked to anyone yet and felt that they would want him to get Dylan "betablocked" correctly first before even talking to him. He's scheduled an echo next Thursday and another 24 hour Holter then also. He mentioned that he felt we had fallen behind a little bit with Dylan and should have seen him more often.

    My dilemna is that I'm worried he's still not being "aggressive" enough and too laid back. I'm not sure if this is just *me* being *me* (impatient!) or not. What do you all think? I think one of my problems is that I don't have numbers or facts, just his PC's words describing his condition so I'm going to call Medical Records today and try to get some reports sent to me. I've been told by his insurance that if I can get a referral from his pediatrician, based on a recommendation from his PC to see someone else for a second opinion it'll be covered 100%. I'm not sure if that's the route I should take or not.

    If you've read this far, thank you and I'd really appreciate any input or thots!

    Dee (Mom to Dylan, 3, HOCM, endocarditis/stroke, charmer extroidanaire!)

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

    [Re: Advice please! On son's treatment]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-27-02 07:49

    Dear Dee,

    I recommend that you call Lisa at 973-983-7429 and she can hook you up directly with pediatric cardiologists then ask your current doctor to write the referral. It sounds like your current cardiologist needs some help.

    Sarah

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

    [Re: Advice please! On son's treatment]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-27-02 10:07

    Dee,

    step one... take a deep breath.... now lets begin

    You need to know more about what is going on with your some prior to going further... I will be in the HCMA office in the morning _ I know it is Thanksgiving...but would like to talk to you anyway... Call me at 11:00 EST I will be waiting for your call. There is just too much to say and I have not got time to type it all in now.

    Hig hug,

    Lisa

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

    [Re: Advice please! On son's treatment]

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

    Date: 11-28-02 06:09

    Dee - I am here in the office..so you can feel free to call!

    Lisa

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

    [Re: Advice please! On son's treatment]

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

    Date: 11-28-02 06:44

    LIsa---

    IT IS THANKSGIVING___GO UPSTAIRS!!!

    Have a happy!!!

    Sarah

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

    [Re: Advice please! On son's treatment]

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

    Date: 11-28-02 09:53

    Ha ha ... now I am at my moms and dont you know it I walk into the computer room and here is the message board!

    HAPPY TURKEY DAY!

    Lisa

    PS... I spoke to Amy a little while ago...she is making a nice chicken dinner for her family, I am proud of her!

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

    [Re: Advice please! On son's treatment]

    Author: Dee (---.jvl.wi.charter.com)

    Date: 11-28-02 19:05

    Lisa -

    I'm sorry...we were at relatives all day...(was that 6:09 AM you posted? AM??). I'd like to call you sometime tommorrow, saturday or sunday? or next week if you're not available till then. Please let me know!

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