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New- diagnosis for 12 1/2 yr old son


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  • New- diagnosis for 12 1/2 yr old son

    Sharon, thank you for the warm welcome. I am trying to be positive- after all, finding this problem was really a fluke. It is an early stage, and so hopefully with monitoring, my son will have a long healthy life. Since it was caught as early as it was, we are warned and can watch and treat as needed.

    I havent discussed this whole thing with my son. He is aware there is something, but as far as he is concerned, the pediatrician and pediatric cardiologist have said he can continue his sports and will be rechecked next January, so its no big deal. I am not ready to get into the big picture with him becasue I don't understand it all myself. We know he's okay now, and thats what matters right now. He's at a pretty tender age- 13 next month, in middle school, and really coming out of his shell this year. He has had a lot of success in his sports this past year, and I am so thankful that he doesnt have to have that taken away at this point. Sports are an integral part of our family, and his success in baseball and basketball from last summer to now, have really bolstered his self esteem. We didnt ask or beg to be allowed to continue these (as some pushy sports parents might do)- we were immediately told that his heart function on the tests is normal and he can continue on. In fact, after reading someone else's post early today, I called and asked specifically about basketball and baseball and he reiterated that his heart function is normal and to let him be a kid.

    One more part of our story I havent mentioned..... My son was being screened, as I mentioned, for an aortic root dilation or aneurysm which runs in the males of the family. We have a large family, and they are the subject of a genetic study at the U. of Texas. UT recommended the echoes becasue of the aneurysms occurring in the family My 32 yr old cousin had an aortic root dissection last summer and actually survived. My father and 2 uncles have aneurysms though my father's has been stable for 14+ years and they think its possibly congenital (it was first found in 1990 and has never changed.) Several cousins and their kids have shown aortic roots which are high normal and mildly dilated, including my other son who is 10 yrs old. Anyway, U of TX is studying and reviewing all of the echoes and they will be reviewing Kyle's and providing a 2nd opinion. We are in the process now of getting both of my sons' echoes, as well as mine put on discs to be sent to Texas.

    It was a difficult week last week. I gotthe first call that my 10 yr old did show a mildly dilated aortic root like is running in my family. Then my best friend had a pulmonary embolism (thank God she is doing okay- she had a very bad time.) And then I get the call about Kyle saying "Well ther's good news and bad news"- good news was no sign of the aortic root problem, and bad news is HCM. I am a pretty positive person, so with my sons I am thnakful that both problems have been diagnosed early and know that the awareness that those things exist means a whole lot in their successful lives with such. And I almost lost my best friend to something no one saw coming, but I didnt! The first time I was able to see her in the hospital, she grabbed me and hugged me and said "You could have beencoming to my funeral today." But she is okay, they diagnosed a clotting factor problem that is treatable,and like the boys, knowing and being educated make a huge difference in living with these things.

    Sorry so long! I've had a helluva week!

    mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

  • #2
    SOmehow I posted this wrong. I apologize- I'm a rookie! It was in reply to Sharon's post to me on another topic.

    mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"


    • #3

      You really did have a tough week! Be assured of our support and prayers for your family.


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


      • #4
        Jill, what a trying time this must be for you. I, as I am sure we all do, wish your family well and hope they get the medical intervention neccessary. I am sure with so much on your plate you could use a shoulder to lean on. We are all hear with open arms.
        Please keep us posted on all that is taking place and best wishes to your friend for a quick recovery.

        It's not what you gather, but what you scatter that tells what kind of life you have lived.

        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


        • #5
          Hi again Jill,
          My son was diagnosed last April. He started on Atenolol at that time. He had another echo 6 weeks later, and then another 3 months later. He is now due to go back next month (6 months after his last visit) and I am sure that he will have another echo then. At his last visit, he had a stress echo where he ran on the treadmill and then was echoed. On that echo, his gradient was confirmed. Has your son had a stress echo? That way, they could tell what was going on when he is running on a basketball court. As you mentioned, these boys are growing at such a fast pace right now (my son has gained 15 pounds and grown 4 inches since diagnosis), that changes in the measurements in their hearts are obviously going to happen also. When is your son due to be re-checked? I would hope they are following him more often than once a year at this crucial stage in his life. And believe me, we know about sports being an integral part of your lives. This is tough enough for all of us diagnosed with this disease, but poses different problems for young athletic kids who want to play ball. My son has been playing ball since he was 5 years old. ALL of his friends play ball. He has had to give up most of his sports, but he still has baseball, his biggest love. This was a tough decision to make but a necessary one. Read all you can and be your son's advocate for what is best for him. Best of luck to you both.


          • #6

            My son hasnt had a stress echo. We are supposed to hear from the doctor again today or tomorrow about our next step. So far we have only been told that he will have another echo next January.

            I am kind of at a loss becasue I am getting so much conflicting information. The pediatric cardiologist and pediatrician both feel my son's heart function is normal and both have approved him to continue on and finish his basketabll season and move into baseball. Some posts I have read make it seem like I should put him in a glass bubble, which is the opposite of what the doctors are telling me. Its a very confusing time, and as you can see above, its been a pretty overwhelming week.

            You mentioned your son and his growth spurt. My son has grown 7 inches since September 2003, and at 12 1/2 is 5'9" and about 130 lbs. He is already in the throes of puberty with a wormy mustache and know it all attitude. From what I have read, this is when this stuff usually shows up. Kyle hasnt had any syncopal episodes, has never complained of his heart racing, or had any of the symptoms people describe. He was a co-captian of the middle school soccer team in the fall, has been playing basketball, and basically is involved in sports year round. Its tough to hear from my doctors that he is okay and just needs to be watched, and then to hear from others that he shouldnt be playing his sports (which for him is the best realease for all that overflowing testerone!). For now, he will continue playing and continue his normal activities, but at the first hint of a symptom we will stop! Baseball is his first love too, so its good to know that if that happens, he may be able to continue that a while longer. He has dreams of college baseball, and I am afraid that may be done, depending on the progression of this.

            Anyway, please excuse my rambling. Its easier to talk on here than in person right now, so I am sort of venting.

            mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"


            • #7
              I would call Lisa and have here help you get him into a specialist (HCM) and take their word for it they won't steer you wrong, that is like my doctor here thinks i can exercise and the specialist said no so guess who I'm going to listen to that's right the doctor up north, keep in touch and please call Lisa

              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


              • #8
                It's completely ok to vent here. That's part of why we're here to begin with, to be a place for information and support. The vents are part of supporting one another. You have had a rough couple of weeks. Take a few deep breaths and get your thoughts in order. HCM is complicated and you can go as slowly or quickly as you want in order to understand it. If your son is confirmed with HCM, you might want to try to make arrangements to come to New Jersey the first weekend in June. We will be having our annual meeting with many of the top experts in the HCM field. They usually also have several other kids who are living with HCM. You will be able to interact with other HCM'ers, family members, and the experts one-on-one.


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


                • #9
                  Jill ,
                  I do think you are getting conflicting information , but it is occuring away from this site. While I do not profess that we are the experts , the information disseminated to us is via experts , specialists and world renowned authorities on HCM.

                  Please understand that all the information on this site is monitored very closely by Lisa Salberg and all the moderators for content and accuracy and will be edited to ensure that only the accurate and latest up to date information is given out . Those of us on the site base our personal opinions on the highest authority of information available daily to us. Treatments, observations and interventions for HCM patients vary from doctor to doctor but not so very much from HCM specialist to HCM specialist .

                  You have gotten some very specific and accurate information from knowledgeably informed individuals here. Please consider it carefully when making decisions regarding your child and his HCM. Many , many of us were informed for years that we had "NORMAL FUNCTIONING HEARTS." It took a long time for me to wrap my mind around why a cardiologist that I had known and had been seeing for 18 years simply said my heart was normal , and that I just needed to be more active and push myself harder.

                  It is well understood that HCM hearts are hyperdynamic and usually have normal to higher then normal ejection fractions and many people experiece few symptoms if any . My brother has no problems with his HCM nor does he have an AICD. Two of my cousins age 30 and 42 were seen regularly by their doctors. Their hearts were " normal " until their autopsies were done after their sudden cardiac deaths, they died of cardiomyopathy. It is also known that HCM hearts can suddenly and for not always clearly understood reasons, beat so hard and with such force that a fatal arrythmic heart beat can occur and the individual can suffer sudden cardiac death. It does not always occur due to sports related activities, however SCD often occurs in a large percentage of certain types of sport related activities of those individuals found to have HCM.

                  I hope that you do carefully consider all of the info while helping your son to live as normal a life as possible and safely. I hope that you soon speak with Lisa Salberg .

                  Best Wishes.

                  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


                  • #10

                    Please, for the love of God... vent, vent, vent! That's what we're here for.

                    Nobody wants to live in a glass bubble, especially a 13 year-old kid. In my mind, living like that is even worse for an HCM'er than anything else. We all need to strive to be as physically active as we safely can within the constraints of our disease... not spend the rest of our lives sitting on the couch because we're afraid of dropping dead. What kind of life is that? The truth is only about 1% of HCM'ers die from a sudden cardiac death. However, the greatest percentage of those are young people and we all tend to be a bit overprotective of our young people whether they are ours or not.

                    My own son has not even been tested for HCM yet, despite the fact that i myself have it and my father (his grandfather) had it and suffered a sudden cardiac death. However, at the time i was diagnosed my son was already 18 years-old and therefore i cannot force him to have the tests if he doesn't want to. I guess he'd rather not know, but to be honest that's even scarier for me than if he was diagnosed with HCM. At least then we would know what we are up against.

                    Please be assured that nobody here wants to alarm you or say that your son has to quit doing the things he loves to do. We just want you to get the best possible medical advice so that you can make an informed decision. If it seems that you are receiving conflicting advice, it is only because every case is so different, and only an HCM expert can tell you what's right or wrong for your own son. My sincerest wish is that he can just keep on doing what he is doing and that there won't be any problems.

                    If you've already called Lisa, i'm sure she's recommended some experts in the field for you to contact. Please let us know how that goes, and if there is anything we can do to help you. Even if you just need to ramble on about your worries, please feel free to do so. We all do that here, and it's quite cathartic!

                    Take care,

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


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