If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Quick question

Collapse

About the Author

Collapse

SheliRenee Find out more about SheliRenee
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Quick question

    Hello All -

    I took Keanu (who turned three today) to his E.P. on the 1st of March and he told me that he is thinking about taking Keanu off of the disopyramide (the anti-arrhythmic medicine). I don't understand why he would do this. He told me that his last three or four holtors showed nothing out of the ordinary, but wouldn't that be because Keanu is taking the disopyramide? They haven't increased either of his meds in such a long time and that concerns me also because Keanu is growing. The E.P. did say that the doses are very low..... He actually wants me to give Keanu his propranolol three times a day instead of just twice a day. This medication says to administer it evenly throughout the day.... Does that mean I need to give it to him every eight hours (which would include waking him up at night) or divide the number of hours that he is actually awake by three? We still have his sedated echo to go to on the 10th and then we see the other cardiologist (who brought up the possibility of the septal myectomy). I am anxiously waiting to hear the results/discoveries of that echo before contacting his insurance regarding the possibility of taking him to the Cleveland Clinic. My sister-in-law works in the adult cardiology department at the Cleveland Clinic, so at least I know we'd have a place to stay....the problem would be getting me and all of my kids there (I couldn't leave them here because my husband would still need to continue working). Anyway....I guess I had better get to bed.... I just had a baby on the 10th of February and he is sleeping, so I should take Keanu and get the both of us to bed before Gavin wakes up to eat.

    I'll post again after the echo on Wednesday. I hope this finds everybody doing well.

    Good night.

    SheliRenee
    Mom of Keanu
    4 years old (will be in March)
    Dx at 2 days old with Biventricular hypertrophy
    Dx at 6 weeks with HOCM
    Dx at 5 months with V-tach
    Dx at 3 with Noonan Syndrome

  • #2
    Re: Quick question

    Hi,
    Really liked what I read about getting another echo, and heading for a visit to the Cleveland Clinic. Sounds like you really have your act together.

    I guess the doctor feels that since your son is on such a low dose of disopyramide he just might be able to get along fine without it. See what the CC thinks.

    Regarding the three doses of medication a day, when I have that situation I take one dose when I get up, one dose before going to bed, and I try to split the difference for the middle dose.

    Hope that’s of some help,
    Burt

    Comment


    • #3
      Re: Quick question

      Hi SheliRenee,

      My kids take their propronolol 3 times a day as well. They take the first dose when they get up for school around 6:30-7 a.m. The next dose is at 3 when they get home from school and the final dose is at 9:30-10 p.m. just when they go to bed. Your son is much younger than my kids, so I'm sure these times won't work for you, but I would discuss it with your PC. He/she can give you the times you should administer the meds. We worked this schedule out with our PC because the school policy is a signed doctor permit for meds to be taken at school and the meds must be brought back and forth to school everyday (possibility of losing it, forgetting it, etc.).

      Hope you get everything figured out soon. I know it is always worrisome when things get changed.
      Michelle - mom to Krista and Tyler both HCM
      Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
      Tyler surgery: 1/98 myectomy

      Comment


      • #4
        Re: Quick question

        Hi. I tried posting yesterday but the board went down just as I clicked submit. I just wanted to congratulate you on the birth of Gavin. I hope all goes well with Keanu's echo tomorrow. Let us know.

        Reenie
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

        Comment


        • #5
          Re: Quick question

          Hey All -

          Well, Keanu had his echo yesterday. Aside from the sedative (which has affected him a bit oddly the last two times), things went smoothly. We saw the cardiologist afterward. She thought it was a bit odd for the other cardiologist to want to take Keanu off of the anti-arrhythmic medication, especially since Keanu had a fainting spell on Christmas Day (only the 2nd time in his life). She confirmed that taking the Propranolol three times a day was not going to hurt him.... she felt that because Keanu has grown and the dosage was pretty low for his weight now that it would be better keep the lower dosage and give it three times/day. She also told me that his septum was only about two times the size it should be. She also told me that his outflow gradient was only 36 and it had been 55 before. How is that possible? I thought this stuff wasn't actually supposed to "get better." Could it be the meds, his mood, what he had for breakfast??? I'm being silly there, but I'll assume (not a good thing) I'm understood...... The pc gave me her email address because she wants me to contact her directly (while avoiding the phone tag game) the next time Keanu faints. I guess the nurses didn't tell her when I called (as instructed to do) to report the Christmas Day incident.

          Well folks, I am heading off to bed. It's late (after midnight) and I'm exhausted. My eyes are blurry and I can't give any guarantee that what I wrote tonight is understandable. I guess it's better to stop while I may be somewhat ahead. Hope all is well.

          SheliRenee
          Mom of Keanu
          4 years old (will be in March)
          Dx at 2 days old with Biventricular hypertrophy
          Dx at 6 weeks with HOCM
          Dx at 5 months with V-tach
          Dx at 3 with Noonan Syndrome

          Comment


          • #6
            Re: Quick question

            I'm glad he seems to be doing well for now. Do you know what, if anything, caused him to faint on Christmas? Was he overly excited? And did you ever finally get that external defibrillator? I know you said that you'd worked something out, but can't remember the details. Take care.

            Reenie
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment


            • #7
              Re: Quick question

              My best friend's over-zealous son (that's my nice way of saying he's a trouble-maker) decided to put on a Halloween costume and climb the walls in the hallway when we were at her house on Christmas. Keanu was walking to the bedrooms to go play...when he turned the corner in the hallway, he came across this unfamiliar site and it scared the beejeebies out of him. As far as the defibrillator, yes, we finally got the AED in June of last year. We carry it everywhere with us. I thought we were going to have to use it on the 21st of February. Keanu got so scared that he went into what I am calling a physical rampage. We were, again, at my best friend's house (however, her son had nothing to do with it this time). It was actually my friend's kids' double birthday party. Somebody had given one of the kids a cat marionette (sp?) and Keanu picked it up to play. I guess it really freaked him out (never seen one before) and he completely lost it. Fortunately a nurse was also at the party and she helped me monitor his heart rate until it came down. Scare the crud out of me...... Anyway, I don't know when we will go back to her house.... Those days were the last two times we went out there. . . . . I'm not real anxious to go back over there.
              Mom of Keanu
              4 years old (will be in March)
              Dx at 2 days old with Biventricular hypertrophy
              Dx at 6 weeks with HOCM
              Dx at 5 months with V-tach
              Dx at 3 with Noonan Syndrome

              Comment


              • #8
                Re: Quick question

                Originally posted by SheliRenee
                She also told me that his outflow gradient was only 36 and it had been 55 before. How is that possible? I thought this stuff wasn't actually supposed to "get better." Could it be the meds, his mood, what he had for breakfast??? I'm being silly there, but I'll assume (not a good thing) I'm understood......
                Actually, it could be all three!

                I've found that my gradient can fluctuate quite a bit between different echos... anywhere from a low of 70 to a high of 144. Usually it's right around 100. A lot of things can influence a gradient on an echo... how recently you've eaten, when did you take your meds, did you do a lot of running around prior to the echo? Stuff like that.

                If i eat a bagel an hour or less before an echo... i'm guaranteed at least 20 extra points on my gradient. LOL. (Your heart works harder when you're digesting). However, if my echo is in the morning, and i've just taken my meds, and my stomach's empty, my gradient leans toward the lower side.

                Your gradient (or pressure) is a measure of HCM's effects on the heart, not a physical measurement of the HCM itself. Your son's meds may very well be relaxing his heart and effecting his gradient favorably

                Glad to hear that you had a good visit with the docs!

                Jim
                "Some days you're the dog... some days you're the hydrant."

                Comment


                • #9
                  Re: Quick question

                  Thanks Jim - I didn't realize that so many things could affect the hear and the echo. Keanu doesn't get to eat before his echo because he has to be sedated. I'll be grateful when he will lay still long enough to do the procedure without the sedation. It takes the better part of the day to get it done. A gradient of 36 doesn't seem so bad, does it? Of course Keanu is only three, so I am just making more assumptions....

                  SheliRenee
                  Mom of Keanu
                  4 years old (will be in March)
                  Dx at 2 days old with Biventricular hypertrophy
                  Dx at 6 weeks with HOCM
                  Dx at 5 months with V-tach
                  Dx at 3 with Noonan Syndrome

                  Comment

                  Today's Birthdays

                  Collapse

                  Working...
                  X