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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • Back To Doctor with Son/No baseball

    James had started sleeping 16-17 hours a day in the last week and a half. This morning I was alarmed when at 9:00 a.m. he was still asleep after falling asleep on the sofa at 4:30 p.m. yesterday. I called his cardiologist and they told me to bring him in. They did an EKG and listened to his heart. The doctor came in and said the Toprol could be making him very tired and if everything was okay he would cut his medicine back some. When they did the echo, I was watching and I could tell his septum looked different then it did 7 weeks ago. The person doing the echo measured it at about 2.1. 7 weeks ago it was around 1.3. The Dr. came in after and told me it definitely was larger and he definitely did not want to take James off the Toprol or lower it any. He also recommended that James not play baseball at all. He is going to see about talking to one of the specialist on HCM.

    As you recall, I was worried about whether to let him play or not. After today, there is no question, he will not be playing. James told me he wanted to play baseball but he did not want to die. So he is okay with not playing. I just hate what this disease is doing to his life. Being a mother, you want your kids to have the best life. James is so naturally good at baseball and was always one of the best hitters on the team. But I will not do anything to put his life in jeopardy. My daughter loves to ride horses and do English Riding shows. She is also very good at it. Since her brain injury she can do none of that for minimum of one year. I hurt for both of them so much, but I am making sure they have the absolute best medical care. They both are my life. I would give anything for them not to have gone through any of this.

    Anyway, just wanted to drop a note as to what is going on. My doctor asked which specialist I would like him to contact. I said Cleveland, but I have also heard good thing about Boston where Dr. Maron is. Any suggestions? Thanks, Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    janet

    Dr. Lever is a very Good Doctor, but if i were you being he is young i would call Lisa and get a name of a doctor that works with kids, good luck and we all do what is best for our kids it is because we love them

    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


    • #3
      Janet.

      I am so sorry you have to experience this with your son. Please know that you will be in our prayers as you explore the next options for his
      treatment.

      Peace,

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

      Comment


      • #4
        Janet,

        I am so sad for all of you. It is hard enough to be young and "different" without this. I will pray that you will all have special grace and extra blessings to help you deal with such dramatic changes.

        Rhoda

        Comment


        • #5
          I'm sorry to hear of your son's problems too. I'm glad, though, that you are able to get to good doctor and see what can be done for him. I pray that you get answers soon.

          Reenie
          Reenie

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

          Comment


          • #6
            Janet,

            I am sorry to hear that your son won't be able to play baseball. It's tough to be forced to give up something you are so good at and enjoy doing, especially when you're a kid and just wanna be able to have fun like your buddies do. Since your son is 12, i don't think it's unusual at all to see the septum get thicker like that between echo's. It doesn't necessarily mean that his HCM is getting worse, or that you should be alarmed... it just means that he's a growing boy and his heart is growing too. At some point i'm sure everything will stabilize and what he ends up with is what he ends up with.

            The meds could certainly play a role in how he is feeling right now. When my doctors were trying me out on Toprol-XL, i could easily have slept all day, every day if someone had let me. Toprol is a very good drug and many people do well on it, but unfortunately in my case the side effects were just too much compared to the benefit i was receiving from it. It takes some experimentation to find the best med and just the right dose, so hang in there. In time your doctor may decide to switch your son to something else that has fewer side effects.

            By the way, and for what my opinion is worth, i think you're doing a fantastic job of staying on top of things like you are. This is a very important time to monitor your son's HCM since he's in a growth spurt right now, and it sounds like you've been doing everything right and seeking out good advice.

            Take care, and please continue to keep us posted.

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

            Comment


            • #7
              Hi Janet,Im so sorry to hear about this recent turn of events.I have a young son and I can only imagene how difficult this must be for you.I will pray for your son and your family.like Jim said maybe the rapid increase in septum size is somehow tied into his age and growing.Your in my thoughts and Im believing that everything will work out.take care mike
              One day at a time.

              Comment


              • #8
                Hi Janet
                I'm glad to see that you've learned, in time, to talk to James about not playing baseball. He seems to be mature enough to realize the potential outcome if he would continue.
                James is included in my prayers.
                Esther

                Comment


                • #9
                  Janet,
                  Please see our Links page and you will find all the contact information for all the HCM centers we discuss here on the board.

                  I will be back in the office late next week - call me if you need anything.

                  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


                  • #10
                    Janet:

                    Something to keep in mind for your son (and possbily your daughter too) are other options for competing in a sport. Find something that is not as hard on the body that he can enjoy. It will make him feel better about himself if he can find something else to excel at.

                    If he is that good at baseball that means he has really good eye/hand coordination. Take it from someone who switched from softball to golf when my knees said "no more", baseball players tend to have an easy time learning the game of golf because of the good eye/hand coordination.

                    I know it can get a little expensive to play the game so if money is an issue check out the PGA non-profit group that was started to teach kids the game. I don't know much about it, but I'm sure if you go on-line to the PGA web-site you can find the information.

                    12 is an excellent age to start the sport. The younger they are the easier it is for them to learn the proper swing. Plus it gives him a sport that he can stick with his entire life.

                    Not all sports activity have to come to an end because of HCM conditions. Find a sport that works for him.

                    Lynn

                    p.s. yes, I am a golf nut after years of being a softball nut!!!

                    Comment


                    • #11
                      Hi Janet,
                      I was just wondering how James was doing. My heart goes out to you for all the challenges you have had to face. I sure hope you can James in to see a specialist soon. Take care.

                      Hugs
                      Pam
                      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.

                      Comment


                      • #12
                        Hi Janet,

                        My heart really goes out to you and your son. You and I had discussed the sports since our sons are the same age. I am sure this is frightening for both of you, not knowing the course this disease will take, and a tough adjustment for him.

                        I take Toprol XR for diastolic hypertension, and it wears me out! I was falling asleep at work daily when I started it. I started taking it at night and it works much better for me and its still controlling my BP just fine. Thats just a suggestion, if you havent tried that yet.

                        Jill
                        Jill

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

                        Comment


                        • #13
                          Hi, Jill. That's a good suggestion to change what time of day you take a med to see if it affects you differently. Thanks for mentioning it.

                          Reenie
                          Reenie

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

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