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Donna Find out more about Donna
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  • screening

    Hi, I have a question. I have HCM, I have known about a year and have an ICD. Now to my question. My kids age 18,15 and 10, have been screened and are fine for now. The docs. said to have the 18 year old tested again in 2 years. The 15 year old, how has a small murmur, in 3 years and the 10 year old in 5 years. I am worried that this will not be soon enough for them. My 15 year old plays football and is on the wrestling team. what should be the time frame for screening?

    I am allso trying to ge funding and donations to get Automatic Ecternal Defibrillators to put in the school. I you have an information on how to go about this it would be greatly appreciated.

    Yours
    Donna
    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

  • #2
    guidelines.

    HI,

    Please call the office at 973-983-7429 to get the details on how to get AEDs in your schools.

    As for the kids, they should ALL get screened _every single year_. 5 and 3 years is ridiculous.

    Also, your 15 year old with the murmur should have an echo NOW to be sure it isn't HCM.

    You can also get info on pediatric specialists from the office, too.

    Take care,
    S

    Comment


    • #3
      Sarah, Thank you for the information. I will call the office about getting the defibrillators in the school. As for my 15 year old he had an echo done last June and he does not have HCM as of yet. I did think the wait for doing another one was a little bit long. Thanks again for all your help.

      Donna
      Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

      Comment


      • #4
        query

        Dear Donna,

        Why does he have a murmur, if you don't mind my asking?

        take care,

        S

        Comment


        • #5
          Sarah, I don't mind you asking. But I did not know there had to be a reason for a murmur. What kind of reasons are there and what kind of questions should I be asking his Doc.? Any help is greatly appreciated.

          Thanks,
          Donna
          Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

          Comment


          • #6
            Sarah, I don't mind you asking. But I did not know there had to be a reason for a murmur. What kind of reasons are there and what kind of questions should I be asking his Doc.? Any help is greatly appreciated.

            Thanks,
            Donna
            Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

            Comment


            • #7
              weeellll...

              Dear Donna,

              A murmur usually happens because the blood flowing out of the heart is either blocked or flowing back into the heart. If the mitral valve isn't functioning properly, you will have a murmur. If the septal wall is too thick --murmur.

              So the echo should have shown why there was a murmur --valve? obstruction? what?

              With the family history, I would be suspcious any "innocent murmur" claims.

              I would want to see the echo report, if it were me.

              Sorry to throw a monkey wrench at you.

              S

              Comment


              • #8
                Dear Donna,

                As Sarah said, there is always a reason for a murmur. They are typically the sound of turbulent blood flow, from not flowing smoothly through valves or around obstructions. That's what the echo should've shown -- what makes the blood flow not be smooth.

                Reenie
                Reenie

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

                Comment


                • #9
                  what does a systolic ejection murmur at the left sternal border mean?

                  Comment


                  • #10
                    Donna - if he has a murmur and a family history of HCM I would screen him every 6mo to 1 yr MAX something is going on there and if he in sports I would watch very very carefully.

                    Bryan - I will check for you.
                    Lisa
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

                    Comment


                    • #11
                      Hi all, thank you for the information. I will be calling the kids Docs. to find out what to do about all this. Should we send them a pack of information?

                      On another note, I had my first shock from my ICD yesterday at work. It was not a bad as I thought it would be. My co-workers freeked out and called 911. I was lucky that the customer I was checking out was an EMT. I at least talked them into calling my husband. That way I got out of riding in an abulamce to the hopital. Work said to get checked out, so we went. After 3 hours the Doc. said go home and call your Doc. in the a.m. I am still waiting for a call back.

                      Thanks,
                      Donna
                      Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                      Comment


                      • #12
                        work

                        Dear Donna,

                        You can give the HCMA office your doctor's address and they can send packet straight there or to you.

                        Well, I think your office did the right thing --sounds like you should have let the EMTs check you out since the ER didn't do anything! Jeez. Those ERs.

                        Brings up a good question though ---how many people with ICDs have let their co-workers know what to do if they get zapped at work?

                        S

                        Comment


                        • #13
                          What is supposed to be done by others when a person is zapped by the ICD?

                          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


                          • #14
                            Both my husband and daughter have an ICD. They were told by their doctor that if it goes off once....call the office, but if if goes off more than once get to the hospital.

                            Regarding murmurs, all 3 of our children had murmurs at birth. Both daughters had VSDs (ventricular septal defects; opening in the wall between the left and right side of the heart). Our son had a Stills Innocent Murmur which is normal/benign and common. A murmur is a sound; you can't see it, you can only hear it.

                            I would certainly watch your son with his murmur as I would watch your other children due to your family history, but it is possible is have an innocent murmur with HCM in your family history.

                            Comment


                            • #15
                              Yes it is possible to have a murmur in an HCM family that is not related to HCM - but in the 1600 families we follow it is VERY RARE to have this happen. Please keep a close eye on this.
                              Lisa
                              Knowledge is power ... Stay informed!
                              YOU can make a difference - all you have to do is try!

                              Dx age 12 current age 46 and counting!
                              lost: 5 family members to HCM (SCD, Stroke, CHF)
                              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                              Therapy - ICD (implanted 97, 01, 04 and 11, medication
                              Currently not obstructed
                              Complications - unnecessary pacemaker and stroke (unrelated to each other)

                              Comment

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