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  • The kids are being screened tomorrow

    Hi all! After struggling with the insurance issue, the children will all be screened tomorrow. This group of doctors just comes in one time per month to my town. Ironically, it happens to be on the twins 7th birthday!

    As I said before, my children are 9, 7, 7, and 4. I feel good about the
    fact that we are getting this done even though they are young. Some people seem to think I am overreacting. I was wondering, do you all know of children who were diagnosed earlier than 10? I know I read of children younger than 10 dying from HCM, so that's enough reason to have them screened this early in my humble opinion.

    I have had so much on my mind with trying to work my 5 day a week job (I do get off at 2pm which is a blessing) and taking care of my four children, that I couldn't remember to call Lisa S. while she was in the office. If anyone has any advice for me about things to ask tomorrow, etc. please chime in. I had my echo Monday, but won't know anything for a week. With the children, they assured me we will know something tomorrow. Thanks for all your help and support. You are a great bunch!
    Jennifer

  • #2
    Hello Jennifer,
    I wish you all the best with your screenings! I pray for your children and hope they don't have a diagnosis of HCM in their future.

    It's very rare that young children under the age of 10 are diagnosed or even die from HCM. That doesn't mean that it couldn't happen, it's just less likely.

    When I put together my FREE heart screenings the age group that I screen is from 14 to 40 years old. Usually one or two parents ask at our screening if we will screen younger. As long as we have a pediatric cardilogist available at our screenings, we will do echocardiograms on younger children. Usually no younger than 12 unless there is family history.

    Last weekend I did my 12th heart screening event and we were able to assist a set of 8 year old twin girls. Their baby brother had died from HCM at 9 months old - in 1996. And one of the twins had recently been experiencing symptoms (shortness of breath & chest pains). Their family doctor refused to allow the girls to have heart screenings. I encouraged Mom to bring the twins to our screening. It's nice to have a base line exam. So far the twins were fine! I expect to see them at my screenings every year.

    Good luck on your screenings for all your children now and in the future!
    Best Regards,
    Sharon

    Comment


    • #3
      Jennifer,

      I will hold positive thoughts that the childrens screenings are negative. Let us know how it all goes , we are here for you.

      Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment


      • #4
        They all checked out okay for now

        The doctor read the EKG and Echo while we were there and said everything is in the normal range for all four children. My oldest goes back in a year and the others in two years. He confused me by saying that it was unlikely Mom's HCM was the genetic type, even though her doctor told her it definitely was. He thought it more probable it was from hypertension (this was due to her being 51 at first diagnosis). Anyway, I talked to Lisa a good while today (God bless her soul) and she is helping us. Thank you for all your thoughts, prayers and support. I still haven't heard anything on me!
        Jennifer

        Comment


        • #5
          Jennifer.
          I am so happy for you and the kids! I remember the relief we felt when our kids (6 and 8) were screened and determined to be negative. But we plan to have them screened every 2 years and hope for the best.

          Leon
          God Squad co-moderator
          Nothing is as gentle as strength and nothing is as strong as gentleness

          Comment


          • #6
            Jennifer i'm so happy for you and here is hoping for the future, i was not as lucky but my son hopefully will have it alot easier then i have

            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #7
              UFF DA! Not the "genetic kind" - these are the kind of statements that make me nuts!

              We have faxed the ACC Document on HCM to this doctor - lets hope he reads it!

              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


              • #8
                Yes Lisa,
                I guess Jennifer’s doctor is related to the clown I had who pontificated that some people are born with HCM while some others acquire HCM later in life from other causes, like hypertension and a few other conditions.

                I guess these people just get there genes later in life - - or is it their jeans?

                I don’t know where these doctors studied or interned, - or did they just inherit their expertise from their kids?

                Enjoy Florida and come home safe and happy.
                Burt

                Comment


                • #9
                  Jennifer, glad to hear your children look clear!

                  Just FYI......... both my son and my brother's son were diagnosed at age 5. Murmurs were heard at their kindergarten physicals (2 years apart from each other) and they were sent on to be evaluated by pediatric cardiologists. When my brother's son was diagnosed at age 5 they checked the rest of his family and all were clear. Because of this they labeled it a "fluke" of nature and not genetic/familial. He died one year later. The following year when I took my 5 year old son for a kindergarten physical I mentioned my nephew's HCM and asked that he pay special attention to Andrew's heart sounds. It was then that a very prominent murmur was heard..............and the rest is history,
                  Dolly~
                  mom to Andrew(HCM) 21 years old
                  Diagnosed \'95 age 5
                  Myectomy \'96 age 6
                  ICD implant \'99 age 9
                  First ICD shock (X2) \'04
                  ICD replacement surgery \'05 age 15

                  *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

                  Comment


                  • #10
                    I'm so happy for you that your little guys are fine for now! I have to applaud you for keeping on track with screening them and getting factual information when the doctors seem to be poo-poo'ing the situation. You are a good mom for following your gut instincts. I hope and pray that your own echo turns out clear!

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Jennifer,

                      I am glad you have gotten good news about the kids. I hope the rest is good also.

                      Keep us posted.

                      Pam
                      Dx @ 47 with HOCM & HF:11/00
                      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                      Lead failure,replaced 12/06.
                      SF lead recall:07,extracted leads and new device 2012
                      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                      Genetic mutation 4/09, mother(d), brother, son, gene+
                      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                      Comment


                      • #12
                        You know,
                        I don’t think enough is made of the parents – the moms and dads – whose child/children is/are diagnosed with HCM and who persevere through fear, anxiety, the pooh-poohing of doctors, friends, and other family members to give their children a fair chance at a full lifespan.

                        I have to disagree with the bible when it says that being driven from Eden and having children was G-ds punishment for eating that forbidden fruit. I think it’s the successful raising of a family against all that life has to offer that raises us up to being just slightly lower then angels. If indeed G-d made us all, then the raising of children has got to be the doing of G-d’s work.

                        So, all you moms and dads out there who leap over tall piles of toys in a single bound – I salute you.
                        Burt

                        Comment


                        • #13
                          I agree, Burt!

                          Mom's and Dad's that are finding answers over those tall piles of toys and misinformation should be commended regularly, and often. Thank you for being your child's healthcare advocates!

                          Hip Hip Hooray! to all the Mom's & Dad's that persevere!

                          Comment


                          • #14
                            My echo was normal

                            Hi All! Thanks once again for your prayers and support. My family doctor's nurse called today and left a message that my echo was normal. They did not do an EKG and Lisa says I must have one. That will be tackled next week. I am still rejoicing. I never saw the cardiologist, he just read the results of the echo. I am hoping this is normal. Anyway, I requested a copy of the echo report and will send the children's and mine to Lisa to review when I have them. My mom is also going to be in touch with Lisa. I think me telling my Mom what the doctor said about hers most likely not being the genetic type made her feel defensive. I hate that, because she doesn't need anymore stress. Thanks to Lisa for faxing the information to the doctor. Hopefully it will make a difference!
                            Jennifer

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