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  • kids back from dr.

    Hi, my kids had their appointment. The egk showed something called left axis deveation on both of the boys. The doc. said this was nothing to worry about. He could not or would not explain what that was but it was nothing to do with HCM. He said that he would not do an eco because the ekgs were ok. I even told him that the docs. that handle a lot of HCM people said once a year was the way to go. He said that if the ekgs showed any thing he would do one. So I am at a loss as what to do next. He is the only kids cardo. doc. in town as far as I know. Any help would get great. Has any one heard of this axis thing before?
    Thank and have a great day.
    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

  • #2
    Re: kids back from dr.

    NO NO NO NO NO

    Not all HCM'ers have EKG's that are abnormal. Go to the PCP and politely demand he refer you for an echo for each child. Tell him that it will make you feel much better. Don't let him bully you into not doing a proper test to screen your kids! ~off my soapbox now~

    Reenie
    Reenie

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

    Comment


    • #3
      Re: kids back from dr.

      Dear Donna

      Reenie is right. And I don't like that he couldn't/wouldn't explain the other stuff. My pet peeve is doctors who say an abnormal finding is normal. Oh, I hate that.

      If you or your spouse have HCM, the kids should get an echo every year --PERIOD. ECGs are irrelevant.

      S

      Comment


      • #4
        Re: kids back from dr.

        How old are the kids?

        Lets start there..

        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


        • #5
          Re: kids back from dr.

          Hi, The kids are 11 and almost 17. The older one will start football this week. He had an echo last year and has a small murmur. The 11 year old had his first echo when he was 9. The younger one is going to do a sport this year in school. He thinks basketball would be fun. I just am not sure on my next step.

          Thanks for the answers to this letter it helps a lot to talk to other people that know just how afraid I am for my kids. I am very lucky that they have not had a problem yet. It is hard enough two have HCM and know that you could have passed it you your kids, with out having to worry about what the docs don't know.

          Have a great week and stay happy.
          Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

          Comment


          • #6
            Re: kids back from dr.

            Donna,
            Although I did not know about, and therefore did not worry about, HCM when my daughter was young, she did have a serious kidney problem that I had to often ask for doctors to check. I agree with Reenie that telling the doc that "it will make you feel better" may bring the desired response and get them echos this year. But, it is a self-limiting response. If there is nothing on the echos this year, it will be much harder to play that card next year. The doctors will begin to look at you as the over-anxious parent who just won't believe the "reality" that your kids are fine. I speak from experience here. I went to many doctors to try to get help for my daughter. Nothing worked. They all concluded that I was an over-anxious mother and did nothing. One actually apologized to me after her problem was diagnosed and told me that he had considered doing the x-rays that would have diagnosed her illness, but decided not to. The result was that as her problems got worse and worse, I got more and more reluctant to take her to the doctor because I got more and more aware of the way they looked at me. This is very self-defeating.
            So, what's the solution? My suggestion would be to go to him with all the physical documentation - original, peer-reviewed medical papers are best - that say that children in the teen years should be checked yearly. Simply state that you have researched the question and found that echos are recommended yearly and that you are requesting that this be done according to the published recommendations. The best docs will love this. Not-so-good ones will be afraid of you. But either is better than their disrespecting you and thus setting yourself up for having to repeat this ridiculous play every year.
            I hope you can resolve this. It is important, not just from the point of view of your feelings, but more importantly for your children's safety.
            Rhoda

            Comment


            • #7
              Re: kids back from dr.

              I have to agree with Rhoda's observation here. Instead of having a medically necessary test done just to appease an anxious mother, the doctor should be convinced that the appropriate standard of care dictates testing every year during adolescence.

              Instead of prefacing your request with "I did my own research" and then telling the doctor what the literature says (which he or she might interpret as a challenge to their authority) you can bring the same information and say that "My own cardiologist who treats my HCM recommends that my child be screened every year" and at the same time, present the written literature. That way, you are not appearing as if you think you know more than the doctors, you are just relaying a message..

              Just a difference in presentation that might get you further. You know, these doctors do have egos that they have to preserve.
              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


              • #8
                Re: kids back from dr.

                Hey Guys,
                There is yet a third way to get the doctor’s attention – and that is to go in armed.

                Of course doctors are out of season at the moment, but by golly some of them do need the addition of a little lead in their behinds to shake up their brains.

                My goodness, do I have an edge today. Love you guys –
                Burt

                Comment


                • #9
                  Re: kids back from dr.

                  Donna,

                  I agree with Cynthia and Rhoda on this one... the tests are medically necessary and simply must be done. The by-product of that will be that your mind is eased, but you don't want to let him think he's ordering the tests just this once to appease you. He needs to learn his job here. It does worry me somewhat that your cardiologist is willing to accept a clean EKG rather than moving forward with an echo. That indicates he is relatively unfamiliar with HCM diagnosis. It doesn't mean you should necessarily dump the guy immediately... not every cardiologist has a ton of experience with HCM patients. You may just need to train this one a little and help him along without making him feel like you're telling him how to do his job.

                  Please let us know what you find out.

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

                  Comment


                  • #10
                    Re: kids back from dr.

                    Oh man i think i would be taking something written in from maybe this sight and tell the doc you insist on an echo, be your own advocate or your kids, keep in touch and let us know what happens

                    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


                    • #11
                      Re: kids back from dr.

                      I am very thankfull for all of the input that I have gotten from all of my friends on this forum.

                      I had asked for the records from the pediatric cardiologist when we were there the other day. I got them in the mail to day. all I got was the information from this last appointment. Nothing from the last two times and nothing from the echos. This is what he put for Diadnois 1. family history fo IHSS. 2. Previous history of syncope,#. Normal cardiac anntomy and function. 5. Mild left axis deviation on ECG : Recommendation follow up in 5 years with exam and echocardiogram. This is what he said for both boys. Part of what is bugging me is what he put on this paper about"left axis deviation typically is accompained by a primum atriao sptal defect or an atrioventricaular septal defect. It can also be seen in patients that have significant left ventricular hypertrophy, which James and Timmy do not have . Basically I think these are parients that simply falls out of the typical bell shape curve."


                      I will be going back to his office to get the rest of their records. I think I will give him my HCM book that I got from Lisa. I can not let my very active 16 year old go 5 years before he gets an echo. Not to mention my 11 year old going that long.

                      Lisa, do you think you could send him some information?
                      Pediatric Cardiology of Alaska
                      3260 Providence Drive, Suite 321
                      Anchorage, Alaska 99508

                      David A. Brauner, D.O.
                      Scott A.Wellmann, M.D.


                      Thank if you can or can not just the same. I will give them what I have.
                      Thanks again for all the help, Sorry this is so long. Have a great day and talk to you soon.
                      Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                      Comment


                      • #12
                        Re: kids back from dr.

                        Dear Donna,

                        Personally, I would not let my kid (if I were able to have one) play a sport without an ECHO every year before the season starts.

                        5 years is ridiculous.

                        The suggestion to pass on the info from doctor to doctor, as it were, is awesome and I highly recommend it. Also call back and let them know you want teh ENTIRE file. They have to send it.

                        Then ask Lisa who you can send a copy to for review by a specialist.

                        take care,

                        Sarah

                        Comment


                        • #13
                          Re: kids back from dr.

                          Donna, quite honestly, how does he know that
                          "left axis deviation typically is accompained by a primum atriao sptal defect or an atrioventricaular septal defect. It can also be seen in patients that have significant left ventricular hypertrophy, which James and Timmy do not have . Basically I think these are parients that simply falls out of the typical bell shape curve."
                          is a correct assumption if he won't do an echo to look and see????? I'm getting quite mad for you!

                          Reenie

                          PS: I went through a time last year getting my kids screened and I understand the frustration. My kids' doctor ordered the echo, but for reason for screening, he wrote, "IHSS/dilated cardiomyopathy." Um, NO. No DCM in the family. And I had asked him several times to use the term HCM, not IHSS. UGH.
                          Reenie

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

                          Comment


                          • #14
                            Re: kids back from dr.

                            Donna,

                            I will send out a packet of information to the doctor's office today.

                            Kelly
                            Life is 10% what happens to you and 90% what you do with what happens to you.

                            Comment


                            • #15
                              Re: kids back from dr.

                              Reenie, thanks for getting mad for me. I have to get better at challenging the people. I guess I have always been told by people that other know more then I do. well I guess I know more about HCM the this dr. I will get the boys tested even if I have to get loud and upset.

                              Kelly, thanks for sending the stuff to the dr. office. I will get this all done yet .
                              Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                              Comment

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