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Help with son James!

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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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  • Help with son James!

    My 12 year old son James has become very depressed. I would like some suggestions for ways to get him motivated about life again if anyone has any! He of course was shocked about 3-4 weeks ago. When we went to the doctor his septum had enlarged more and his gradient was even higher. They have him on 100mg Toprol. He stays extremely tired now, sleeps alot and yesterday when we went to the movies he was completely give out just walking up to the top stairs of the theater.

    All he does is play video games. His cardiologist did not want him doing anything until our next visit which is July 18th. All he talks about is the things he can't do. He LOVED baseball and of course they don't want him playing that now. He looks at his dad who has been medically retired since he was 36. His dad doesn't do much of anything at all. His dad did have an alcohol ablation and his health has been much better since, but he still does not work. He draws full disability from VA and SSI. He doesn't see much of a future for himself. I keep telling him there are all kinds of things he can do but all he sees is the negative. Since being diagnosed in January, things have kept changing. I was trying to get him to work on his merit badges for Eagle Scout but he said he doesn't want to do that. To make Eagle you have to hike I think about 50 miles. I told him they would make an exception for him due to physical problems. He said he didn't want to be different than everybody else.

    I can see him really depressed and I hate that. He is 12. He loves video games, dirt bikes, 4-wheelers and things all to do with action. Is there anyone else that has a boy that age and have found things they can get involved in. He's the macho type. I just want to see him motivated about something again. I want to see him excited about life again. We go back to the doctor on Monday the 18th of July. We'll find out if things are any better. If things don't get better we'll be going back to Boston. Anyway, any ideas will be appreciated.

    School start back here in 4 weeks and he doesn't even want to go back to school. So I just have to figure out something that makes him realize life is not over for him! Thanks for your help! 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 - I sympathize with your plight. It must be really hard for a kid that age to be told that he can't do what he wants to do. There are others on this board who have sons of similar age (if not now, when diagnosed) who might be able to share with you their experiences.

    My thoughts are these:

    1. Have you talked to a child psychologist who might be able to give him some ideas on changing his perspective? Perhaps counseling might help?

    2. What about non-athletic activities like computer science/programming, video production/filming/photography? Drama? Art? Might he be able to take an intro. class that might introduce him to some new hobby that he hasn't though of yet? There are also sports related hobbies involving statistics, etc. that might interest him. Golf is a good HCM sport.

    I don't blame him for feeling terrible now, but he needs to find something that engages him so he will snap out of it.

    I have the luxury of having a 3 year old that I am encouraging now to have varied interests. You unfortunately have to go back and redo which is definitely harder.
    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


    • #3
      I have a 12 year old son and here are some of the things he loves to do: Read certain books (has to be ones he picks out, nothing I pick out!) He joined Speech Club at school, which involved memorizing skits with a partner (or by himself) and performing them at competitions. Playing Yu Gi Oh cards. Watching movies.

      He also enjoys some outdoor activities and such but I thought I would share some of the more quiet things he enjoys doing.

      I hope James is feeling better really soon! I know how hard it is to love someone who is depressed. You can't make them better all by yourself. Please try getting him help.

      Reenie
      Reenie

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

      Comment


      • #4
        Hi Janet,
        I have not posted in quite a while but have been reading about James and his situation all along. If you remember, I have a 13 year old son who was diagnosed also at age 12 (I also have HOCM). My son has always been quite the athlete also. He is still allowed to play baseball, but is not playing this summer for the first time in 7 years. I have a few thoughts that maybe can help your situation. (I hope.)

        My son sleeps ALOT also- I mean until about 1:00 every day. My 16 year old son (who does not have HCM) also sleeps that much. Alot of teenagers and adolescents sleep alot in the summer because................they can. Add to that the fact that James is taking 100 mg of Toprol and it is a wonder he is out of bed at all. My son takes 50 mg of Toprol a day and it has definitely slowed him down alot. (I believe that even though he is older than James, he is smaller and his septum is also smaller.) I take 100mg of Atenolol per day and there are days that I could stay in the bed all day. Beta blockers can definitely knock you on your butt!

        Another side effect of beta blockers (like Toprol) is depression. You probably know that already, but it is often true. Maybe when you visit your doctor on the 18th, he will make some changes in James' meds like decreasing the beta blocker (or trying a different one) and / or adding a new drug to the mix. When I was on 150 mg of Atenolol per day, I was more short of breath than ever and very apathetic. So maybe your doctor can find the right mix that will eliminate the depression,lessen the lethargy, and help with the shortness of breath. I am also on a calcium channel blocker and Norpace, but I don't know about the use of those in kids.

        We have to be resourceful in finding things that our boys can do within their limits. We have hit on a few this summer that maybe James would also like. One is bowling. My son is a huge sports fan who LOVES especially the ones he can play well. He tends to get discouraged easily. Bowling was not so fun for him at first because he wasn't that good. Now (with practice) he is better and enjoys it more each time we go. (Plus, it is indoors and air-conditioned) Another interest that he is developing this summer is golf- not even playing 9 or 18 holes, just starting out by going to the driving range and also miniature golf. He loves to play checkers and chess and alot of board games also. And, even though he is not playing baseball this summer, he loves to watch it on TV. He has learned to keep an official scorebook and is very into the "stats" of the major leaguers. He thinks he would like to be a pro baseball announcer (broadcaster) now that he doesn't see himself playing in the major leagues. He loves going to the movies, but we NEVER climb the stairs there- I CAN'T!

        Try to motivate- motivate- motivate! I know it is tough. It's hard enough knowing what is normal teenage stuff and what is something to worry about. I am sorry that he is having such a rough time right now, and I know how hard it is for you as his mom. You are both in my thoughts.

        Vickie

        Comment


        • #5
          I know exactly what James is going through right now. Granted I'm not his age but facing the facts that I will probably never be able to do the things I love to do. The hardest thing for me is not being able to be an EMT. I had one of those very depressing moments today. I was cleaning my room and came accross my EMT uniforms. I was flooded with emotions. I was so angry for this being taken from me. I also cried because I felt like a part of me had died. I just sat there gazing at my badge and patches wondering how my life had come to this in three years.

          I also used to be quite athletic with the ROTC bit and all. But, I try to keep myself busy now with other things. I love to work on my car and read. I also use school as my main means to get away. I will study books from the library to help me get an edge on what I'm about to take or something I don't have time for. I also watch alot of the history and science channel. The programming is amazing and you learn alot.

          You just gotta keep reassuring him that there is a light at the end of the tunnel. Unfortunatly, it may get worse before it gets better but it will one day. He just has to believe that there is something to live for.

          hope this helps a little,

          mary S.

          Comment


          • #6
            Janet,
            Try signing him up to help at a local children's hospital. Other children at cancer centers or burn units love to have other kids their age to talk to or be read to. Many if James gets a look at other kids his age with other problems he may realize how lucky he really is. I know it can be very depressing to see children that have been badly burned, but they are just kids and their lives must go on also...


            Tigger1
            " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

            Comment


            • #7
              How about a fun muscial instrument. Might drive you a little nuts, but would be good for him. Something like a guitar or a bass guitar would be something that most 12 year olds would love to try. He would be the coolest kid on the block if he had an electric guitar or bass guitar!!

              Golf and bowling have been mentioned, and both are excellent ideas. Especially since that would give him something year round. I gave up softball because of bad knees rather than HCM and now rely on golf and bowling for my recreational sports. The good thing about both these sports is that they are sports that can continue on his whole life.

              Sounds like a great thing to do is to find something that both he and your husband could do together. Golf and bowling fit that category.

              What were your husband's hobbies before he started having problems? Are there any low impact hobbies that you could convince him to restart if for no other reason but to help his son?

              Maybe the two of them can take a wood working class together and learn to work on small projects (bookcases, small furniture, etc.) Or if your husband is mechanically inclined, maybe get an old beat up ATV or small boat and make it a joint project to put it back in shape then take out together to use?

              Hope some of the ideas help.

              Lynn

              Comment


              • #8
                Janet,

                There are some great ideas out there for you to think about, some may work and due to family dymanics others may not.

                I would suggest you speak to the docs at NEMC to check on the med issue as some beta blockers can cause depression and a different drug may be better for him.

                Call if you need anything.

                Best wishes,
                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


                • #9
                  Dear Janet

                  I know how you feel. my son is fifteen has had HCM since birth and had his ICD put in last year, and needs it replaced next week. After it was put in it fired but it was a mistake, he got real depressed for awhile, but his friends made the difference! They were with him when it went off and responded better then some adults would have. They make sure that they do things he can do. but in the beginning when he really couldn't do anything they came over hung out, played video games and behaved like teen aged boys. I think talking to his doctors and letting them know whats going on is important, sometimes it's normal like my son's, but like Lisa said it could be the meds. As for school my son didn't want to go either, but I spoke to the counselors,principle they came through. The couches wanted him on the teams, football,baseball all of them, Keeping score helping the couches anything to be part of the team.The teachers were great and school became fun again. The biggest fear was being shocked again. But now he bowls on a league takes drama and hangs out with the guys.
                  Now he has a girlfriend!! Anything I can do let me know. But you need to be positive so he doesn't see the fear in you. I know I didn't sleep much.


                  Stay well
                  Karen
                  Karen Cicconetti
                  Heart Transplant 1998
                  Don\'t take your organs to heaven
                  Heaven knows we need them here

                  Comment


                  • #10
                    I think if he is interested something by way of the arts as well. I know some schools have summer arts programs as well as local museums do too. Maybe the YMCA could help. He might like a big hunk of clay to express himself with or a few paints, brushes and canvas's. I know I am older, but these things have helped me a lot and music as someone mentioned is also great. How about a rocking guitar or drums With you as his mom , something is surely going to work.

                    My son is 19 I think he sleeps 12- 13 hours a day I guess this is not too unusual, from what I hear.

                    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


                    • #11
                      THanks

                      Thanks for all your great ideas! James has mentioned wanting to play electric guitar. I think I am going to look into getting him lessons. Also Dr. Link from NEMC called about an hour ago and now wants to switch him to Nadalol. He said there was several different beta blockers they can try out on him. He did say with him still growing it is just going to be very difficult keeping him regulated. Has anyone taken Nadalol before.

                      James' school has a golf team as well so I think I am going to try to get my brother to take him to play golf and try and stir up some interest there. It would be good for him I think.

                      It is such a blessing to have this group to come to when you feel overwhelmed and don't know what to do. Thanks so much to all of you who took the time to respond to me! It means so much. I am definitely determined to get James back living again! You guys are all so AWESEOME!!!!

                      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.

                      Comment


                      • #12
                        I have been on Nadolol for years - it is great - no problems at all! Good Luck!
                        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


                        • #13
                          ditto lisa's last post

                          Comment


                          • #14
                            I´ve been on Nadolol also for 16 years (I'm 30 now) with practically no side effects. Due to its long half-life (14-24 hours), another advantage is that physicians often prescript once-a-day dosage. Today it doesn't matter for me but when I was a boy, it was great don't need to take meds several times a day.

                            Best wishes,

                            William.

                            Comment


                            • #15
                              Janet, Since my own diagnosis a few yrs back, I have been trying to get my son(now 13) interested in non-athletic activities, knowing the day may come when he has to slow down. I don't want his world to suddenly fall apart. It was hard enough for me as an adult. So far he is HCM free but he goes for his annual check up tomorrow.

                              Anyway, a few things he enjoys are fishing, ping-pong, playing pool, video games, computers, darts, and two years ago he began putting together model cars. He too is interested in playing guitar, he loves music. Personally, I think the arts would be a great outlet to replace sports. Whether it be music, sculpting, painting, photography, writing, acting or something else. Who knows, maybe he has a hidden talent to be discovered.
                              If James likes animals, maybe he could volunteer at a Humane Society or Vet's office.

                              One thing I know for certain, when you find something you are good at and enjoy, it can really help to lift your spirits. Right now he is focused on all the things he can't do, he has to be shown all the many things he CAN do.
                              Best of luck to James, I hope he is feeling better real soon.

                              Take care
                              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

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