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  • my kids go in for test next week

    Hi, just thought I would share what is going on with my sons. One is 16 and the other is 11. I called their cardo. to get them in befor school and football startes. So far their ecos are fine.But I wish to have them checked just in case because of the sports. The doctor said my 11 year old did not need to have one done till 2007. I told them that I was going to have it done to be on the safe side. Then they made me feel like a silly over protective mom. I told them that when I was in the Clevland Clinic and that the HCMA said that once a year was recamended for teens. They let me make the appointment. I don't know if insurance will cover it or not. Keep your fingers crossed. I will let you know what we find out. Thank for letting me blow off some steem.
    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

  • #2
    Re: my kids go in for test next week

    Good Luck Donna

    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

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    • #3
      Re: my kids go in for test next week

      Go to the link on the site for newsletter - print out the ACC consensus document - bring it to the doctor with you. The thought of having your son at age 11 wait until he is 15 until his next screening is simply horrible. I am glad you set the appointment and are getting your child screened!

      If we can help in anyway - just let us know!

      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)

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      • #4
        Re: my kids go in for test next week

        My husband saw a new cardio on Monday. He wasn't totally clueless about HCM as some doctors are, but when he asked about my kids and whether or not they had been screened, he thought that every 2 years or so would be fine. They're 9, 11, and 12. I told him that I preferred every year and he didn't argue, but I think he thought I was being a bit too overprotective. Maybe I am but I feel better if I take a peak every year.

        Reenie
        Reenie

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

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        • #5
          Re: my kids go in for test next week

          I was clueless when my hubby was first diagnosed. I worried about our kids and had their pediatrician refer them to the peds cardiologist in our area. I have learned to be very direct and firm! After all it is my kids we are talking about. My lil guy is 7 and has a screening yearly. They accidently found a little whole in his heart at the first screening. It doesn't cause any problems so we just watch it. I explained to the cardiologist last week, at the screening for this year that my mom-in law died from hocm last nov. We now relize that my mom in law and eight of her siblings were claimed by hocm as well as two of my husbands cousins. The cardiologist agrees that the kids should be screened yearly, so we can catch any changes, as soon as they appear. Stand your ground and remember that at times we know more than the average doc, when it comes to this disease. Good luck!!
          tommysgirl wishes you a blessed day with many laughs and smiles along the way!

          Wife of Tommy Hall passed 9/22/07
          HOCM, (AA x2, CABG, RFA, Myectomy x2, Maze)
          Tomy 13
          Amber 25
          grandchildren Aiden 6, Maddie 4

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          • #6
            Re: my kids go in for test next week

            My son is 2 1/2, and was screened in utero and at 1. I was told to have him retested when he is 5 or 6, and then again at 10, and then annually through adolescence.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

            Comment


            • #7
              Re: my kids go in for test next week

              Cyn, this is totally off topic, but I pictured you as a blonde.

              Reenie
              Reenie

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

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              • #8
                Re: my kids go in for test next week

                My baby is 40, and he can get his own darn echo’s.

                Speaking of pictures, it is lovely to ‘see’ so many of you posting your avatar. We are becoming a community of friends instead of voices in the wilderness. I for one am most appreciative.
                Burt

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                • #9
                  Re: my kids go in for test next week

                  I also insist to have my daughter tested every year, although I have heard dr.'s tell me i could wait 5 years, I lost my little boy in 2000 and every since I fallow my gut feeling knowing my family history, I know whats best for me and my little girl. I think your probley doing the right thing,good-luck.
                  Jen

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                  • #10
                    Re: my kids go in for test next week

                    Thanks to all that responded to my letter. I am feeling better about having stuck to my guns. I will let you know what I find out next week.

                    Burt, will your 40 year old get the test done. I have a 20 year old that had the first test done about 2 years ago and will not get a nother one. She is bull headed. She said she does not wont to know. Now she has a son, so I am working it from that end. You know, you have to be here to see him grow up and stuff like that.

                    Well, I should go to bed and get some rest. I have to be up in about 5 hours to go to job number 1 and job number 2 about an hour after that. So I will keep you posted.
                    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                    Comment


                    • #11
                      Re: my kids go in for test next week

                      Hi Donna,
                      My forty year old has a pretty full plate for the time being, but he does have it on his ‘to do’ list. He is showing no symptoms, so I don’t think the echo is critical at this point in time, but it will get done – soon. My grandson had his – clear, my granddaughter and my daughter are scheduled. By the way they just spent two weeks in Alaska, and are presently sailing down to Vancouver.

                      I know your days in the summer can get rather long up there in Alaska, but two jobs after five hours sleep? Tell you what, I’ll sleep a little longer tonight for your benefit – and I don’t do that for just anybody.
                      Burt

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                      • #12
                        Re: my kids go in for test next week

                        Burt, Thanks for the extra sleep, it helped a lot. I had to take the elevator at the Dr. office today. I just did not feel like I could get the energy to go up This is one of the only times that I have had to change my every day activity. I have been lucky and not having much in the way of symptoms. I guess that is the way this thing goes. I should go and get the salsa made for lunch at the office.

                        I am glad that your son has the test on his to do list. I am glad that your grandson is ok.I hope the rest of the family are ok also. Did they have a good time in Alaska? I know a lot of people are disapointed by the amout of smoke in the air. It is hard to see McKinnley with the smoke. We have a lot of wild fires going now. I hope that your family was not disapointed with their visit.

                        Good night and have good dreams.
                        Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                        Comment


                        • #13
                          Re: my kids go in for test next week

                          Hi Donna,
                          Thanks for the kind thoughts – I’m glad I slept extra for you.

                          None of the family has shown any symptoms of HCM, so I’m glad about that. While I was told I had an athletic heart and a murmur at about the age of five. There all getting echo’s but there is no sense of urgency about it.

                          My daughter and family’s Alaskan trip highlights are; Fly to Anchorage and on to Fairbanks – ‘Discovery’ sternwheeler riverboat cruise on the Chena and Tanana rivers then coach to Denali National Park – the Tundra Wilderness Tour, then the Ultra Dome Rail to Talkeetna, and back to Anchorage. Coach to Whittier, including the Alaska Native Heritage Center, then board the Island Princess – College Fjord – Glacier Bay – then a stop at Skagway and the White Pass Scenic Railway tour. Next was Juneau and the Mendenhall & Juneau Highlights tour. Next day Ketchikan and the Saxman Native Village tour, then a nice cruise down to Vancouver and a flight home to California this afternoon. The first week in August they’ll all be in Las Vegas to help celebrate my birthday.

                          Did they get anywhere near where you live? You must be in or near a city since you said you took an elevator to your doctor’s office. Your information only says Alaska, which is one fifth of the United States, or 586,412 square miles of land. It’s somewhat hard to pinpoint where you live from that.

                          Get some rest and have a superb day.
                          Burt

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                          • #14
                            Re: my kids go in for test next week

                            Burt, I got tired just reading all the things your kids did. It sounds like they hit most of the hot spots. When they went to Anchorage, they went by my small town. I live in Big Lake. We are about and hour and 15 min. out of Anchorage on your way to Fairbanks. We have not stop lights and two, two story offices. We do however, have 5 churches and 5 bars. We do have a gas station. I have to go to Anchorage to see my Doctor. I do like living out in the sticks.

                            My kids just got back from Nevada. They were with the Grandparents for 5 week. They said it was hot and they lived in the pool. I hope your family and you have a great time at your Birthaday party.

                            Take care and have a good night and a great Sunday.
                            Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

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