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  • Sports and HCM

    [Sports and HCM]

    Author: Michelle, Emily's Mom (---.hay.net)

    Date: 12-04-02 06:38

    Hi Everyone!

    Just catching up on some reading and had a few questions/comments regarding sports and HCM.

    Where do you draw the line with your child with regards to sports/competitive sports?

    Most kids know their limitations, but as most parents know, kids don't always follow the limitations that their bodies are telling them. In Ontario, unless the kids are in heart failure and under the age of 16, parents don't have the right to deny their kids these 'sports opportunities' due to health reasons, as kids can officially make their own decisions regarding healthcare.

    I feel all we can do as parents is to educate our kids, however my 9 y/o (who is very sports-minded and was hoping Emily, 2.5 y/o with HCM, would be) brought up a good point. HCM kids live an unknowing life expectancy, so shouldn't these kids be allowed to live life the way they wish? It was very hard to answer this question from my 9 y/o, "Mom, would you rather have Emily live a long life and not be happy, or a short life and live a life the way Emily might want to live".

    This gave me quite a few sleepless nights, as Emily is a very active little girl. Even during Chicken Pox and fever, she was still active. The only thing that kept her down was convinced to watch Barney and Elmo. Although her HCM is doing quite well today, we are aware that next week things can change. I came to this conclusion as far as Emily is concerned:

    I prefer Emily to enjoy the life she has, be it 1 year, 10 years, or (the good Lord willing) 50 years, the way she would want to, within reason. It's might hope that thru (alot of) guidance, that she'll recognize when it's time to slow down, and pay attention to those signs. However, if Emily still chooses to make the choice of sports after knowing all the risks, then that's a choice I have to accept. Arguing the subject will only cause relationship problems. I'm not a passive parent (ask my 9 y/o!) and will still be encouraging Em to go the right path, but on the other hand, our kids were not asking to be born with HCM, and ultimately (depending on their age of course) it's their decision.

    This decision caused a lot of thinking and discussion with my husband, but it's the only decision we feel we could come up with. Emily is our miracle child, after 12 years of surgeries to open up scarred tubes from Endometriosis, and 2 IVF attempts, and adopting our current 9 y/o, Natalie. (When Natalie was 5, she asked Santa for a little brother and sister, and look what happened! She's more careful now for what she wishes for...) It was devastation for us to find out our birth child had HCM and WPW. But this is a decision we can live with, as we know it would help to put more happiness in Emily's life.

    God Bless everyone!

    Michelle

    I

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Cassandra (24.70.156.---)

    Date: 12-04-02 11:04

    Dear Michelle,

    It was with great interest that I read your posting, because I am going through a very similiar discussion with my 15 y/o. Kyle was diagnosised recently with HCM and he was very active. He was on his high school wrestling team and enjoyed downhill skiing.

    He understands that he is unable to wrestle however he wants to continue to ski. He told me exactly what you stated, that he would rather live a short happy life then a long boring life. Of course this is very difficult to accept, Kyle is my only son, I had ovarian failure after his birth and I am unable to have any more children. Needless to say, I am an overprotective mom.

    I have thought about this from my own perspective and in a sense I can see his point, it would be difficult to live your life always wondering what if.

    I would be very interested in hearing from others who have been young and gave up or participated in sports and how this effected them. I have tried to get Kyle to look at the message board but he does not want to. He is still not wanting to fully realize what is happening to him. It has been a tough couple of months.

    Best wishes to your family.

    Cassandra

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 12-04-02 12:23

    Michelle,

    I want to respectfully say that I disagree with your decision about Emily. I understand that she's a tyke and that she may never want to play sports, but I think sometimes a parent's judgement is what is called for. If she didn't want to wear her seatbelt just because it didn't fit into her schedule, would you allow that? Whether she was 3 or 13? I truly believe that this is just another part of parenting and that we aren't supposed to make our decisions on whether or not our child will like what we have to say. Your 9 year old is a deep thinker. I applaud her for that. But she is unable to see the bigger picture. That if Emily does decide to play fall soccer, it could possibly kill her. I do hope you reconsider your stand on the matter.

    Cassandra,

    I am sorry for your struggle with Kyle. Again, I feel you should do all you can to discourage him from competitive sports, and yes, downhill skiing is competitive. He has to understand that life won't just go on hold because he isn't able to be as physically active anymore. Please encourage him to write to Adam @ <[email protected]> I believe Adam can help him with those feelings. Adam's brother was a basketball player who had to give it up due to HCM. Adam also has HCM. I think it would be good for Kyle to see another young guy's take on the situation. By the way, Adam is 22, I think.

    I hope I haven't stepped on anyone's toes, but I feel very strongly about protecting our kids. My daughter is now on a 30 day event monitor to try to find out what type of arrhythmias she has been having recently. So far she's clear of HCM, but she definitely has some sort of tachycardia thing going on. I'm very protective of her, as you might imagine. I do hope that both of you read this in the tone of a concerned parent and not a meddlesome person. Good luck to you.

    Reenie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Amy (---.proxy.aol.com)

    Date: 12-04-02 12:27

    Michele,

    I find this issue very difficult myself. My seven year old has HCM and loves sports. He dreams of being a professional soccer player. I have always been honest with him...I have told him that he won't be a prof. soccer player because of his heart condition. At the moment I let him limit himself. However, I do draw the line at things like competative running. My problem is that Andre is by nature extremely competative. He always wants to be the fastest and the strongest. Sometimes during P.E. he will stop if he is too out of breath. However, if it is something that he is really into, he pushes himself quite hard.

    Another problem is that even among HCM Specialists I have received conflicting advice about what level of activity is safe for him. During his last appointment, the specialist told me that he could probably count the number of young children who dropped dead from HCM on one hand. He said it was fine to let him play soccer. He told me that the real danger zone starts in adolescence. Of course, that advice doesn't help if your child happens to be among those he can count on one hand.

    It is such a hard judgment call. of course there is always going to be some risk...even if it is extremely small. At the moment I pretty much let him do what he wants. Like most children he wants to fit in and be like his friends. When I ask him about school each day, he say "I scored a goal," or "I tackled the best player." Soccer is the highlight of his day. I do worry that I let him do to much. If anything happened to him, I don't know how I'd forgive myself.

    I understand what you are going through and I feel for you, but I don't know the answer. As parents we just make the best judgements we can, and hope that we have done the right thing.

    Best Wishes,

    Amy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Bryan (---.bos.east.verizon.net)

    Date: 12-04-02 12:58

    When I was a child I played competitve sports (Basketball,Football,Baseball). I was able to play until my freshman year in highschool when I was finally pulled off the team by the pricipal. This crushed me to the point were I would cut class, my grades dropped and I even started smoken mirajuana. I look back at it now and think it was the stupidest thing I have done. I wish I could take those years back. The reason being is I thought sports ment every thing. As I got older and more mature i realized it wasnt. I remeber when I this first happened my mom asked me what I wanted to do and I told her I wanted to play sports she tried like **** for me to be able to play but no luck. The reason she tried so hard was she and I said "if i was to die she would want me to die happy and doing something I LOVED to do." This caused a huge family fight with my mother and sister as my sister thought my mother was trying to kill me. I look back at it now and I have a ton of thoughts. Why I made that decision? Still to this day I can only say it was from being VERY uneducated. I didnt know half the stuff about my condition 13 years ago that I know today. I also think about the line my mom and I said "if i was to die she would want me to die happy and doing something I loved to do" and I feel as if I was being selfish. I didnt care if other people cared what happened to me. I just cared about what I wanted to do. I cant speak for those that have passed playing sports, but I think if they could see the pain their lose caused their loved ones the outcome would be different. I believe most of the deaths on the playing feilds come from undiagnosed conditions, or mis-diagnosed. When I also think about that line I think, how did I know I wouldnt be happy later on in life? I didnt. And I can say that Im a lot happier now than I was back then.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 12-04-02 13:53

    These questions are so tough and there is no one answer. It was probably harder on me to see my son suffering emotionally over what he couldn't do than it was for him to not be able to do it. He had played soccer, he started working with the coaches and refs. Every Sat am, he groomed the fields, painted lines, etc. His friends were great and he was shown appreciation, trophy for volunteer effort, was a part of the crowd, etc. As he grew older, his older brother played high sch football. He and my husband went to every game and worked the sidelines( I called them the chain gang - I don't know the real title). He was a part of the group, the team was great and showed their thanks, etc. Our high sch was pretty special in that it focused on including everyone. Many special needs students were team managers, etc. It takes extra effort, but there is always an alternative, you just have to look for it. Now is the time to guide and steer these folks toward lifetime interests that will keep them involved and active. There's golf, music, etc. The devastating thing for my son to give up was skiing. There was no replacement for that. He also is not ready to read the message board, but I see many stories like Bryan's so some day, my son may post also. As parents, we are always doing what seems best at the time, but never really knowing at the moment. I have to agree with Reenie, that we are the ones who have to show responsible judgement which means not letting kids play with matches, run in the street, or if applicable, not play strenous competitive sports. Linda

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: betsy trawick (---.atl.client2.attbi.com)

    Date: 12-04-02 18:39

    Hi - these messages have caught my interest as well - my VERY active, VERY athletic son was forced to quit at age 14 because of HCM - we had known of his HCM since age 7 but allowed him to play baseball, swim competively(he won the state championship in butterfly), and football from age 10-14. At 14 though, he was forced to stop due to high school regulations. He was devastated! He did work his way through it however, and I feel grew emotionally from the experience. However, he never let his love of sports die - and continued to jog, work out, etc. Unfortunately, the healthy jog caused his death this July 4th. It was devastating for our family but I must say that I do have comfort in knowing he lived a very, very full, active and happy life and I really am grateful that we allowed him to do all the things he loved to do. HCM takes you out when you lest expect it too and it could be walking down the street or playing a game of football - I say live - isn't that why we are here? Best of luck to you and your family.Cassandra wrote:

    >

    > Dear Michelle,

    >

    > It was with great interest that I read your posting, because

    > I am going through a very similiar discussion with my 15 y/o.

    > Kyle was diagnosised recently with HCM and he was very

    > active. He was on his high school wrestling team and enjoyed

    > downhill skiing.

    >

    > He understands that he is unable to wrestle however he wants

    > to continue to ski. He told me exactly what you stated, that

    > he would rather live a short happy life then a long boring

    > life. Of course this is very difficult to accept, Kyle is my

    > only son, I had ovarian failure after his birth and I am

    > unable to have any more children. Needless to say, I am an

    > overprotective mom.

    >

    > I have thought about this from my own perspective and in a

    > sense I can see his point, it would be difficult to live your

    > life always wondering what if.

    >

    > I would be very interested in hearing from others who have

    > been young and gave up or participated in sports and how this

    > effected them. I have tried to get Kyle to look at the

    > message board but he does not want to. He is still not

    > wanting to fully realize what is happening to him. It has

    > been a tough couple of months.

    >

    > Best wishes to your family.

    > Cassandra

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Michelle (---.as1.appl.wi.voyager.net)

    Date: 12-05-02 05:12

    On this subject I am fortunate. My children were both diagnosed at birth so they have been restricted from competitive sports for as long as they've been alive. My daughter, now 11, has also been pulled from gym class. Since she has been restricted from these type sports from birth, she never showed interest in or begged to join any teams. She loves to read and write, is a band member, and a girl scout. She is very driven in the things she joins. My son, now 8, is a fanatic sports "fan" (especially football and the Green Bay Packers). He has not asked to join any sporting teams yet. I think since we've been open with him that he can't play on teams but let him play with friends for fun has worked well. He is very active too. He loves to play on the computer and pretend play football in the front yard or basketball in the driveway and he is a cub scout. He always stops and rests in between plays too. I don't have to tell him.

    I've handled the requests for joining teams by telling the kids to put these questions down on paper so at our next check-up with their PC they can ask. Doctor Wilson has been very open with the kids and answers their questions honestly. I think the kids respect that so they listen to him. I know they are not teens yet and this issue may become more involved for us (especially for my son), but for now I think this issue is not a problem. Being diagnosed at birth and restricted from competitve sports from birth may make this easier for us in their teenage years.

    Michelle - mom to Krista (11) and (Tyler 8) both HCM

    Krista surgeries: myectomy 3/97, mitral valve replacment 2/99

    Tyler surgery: myectomy 1/98

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-05-02 06:57

    Hi,

    I've been staying away from this thread because I'm never going to have children and I never wanted to play sports. I had, however, wanted to be a ballet dancer and join the Peace Corps. Nothing doing.

    That being said....

    This is clearly everyone's individual choice, but Bryan has a good point. I was a moron in high school and college and it was drinking that caused my first afib episode. 2 ounces of white sangria. It was not worth it. Drugs and alcohol are a whole other ball of wax from sports, but they are linked to teens inexorably.

    Recent brain activity studies have shown that teens have less developed senses of logic and judgement than adults --the hardest part is that I know I thought I knew everything and I knew nothing and no one could tell me different. When people said "take care of yourself" I honestly didn't know what they meant or how I was supposed to do that. I have heard that teens need role-playing exercises with their parents to practice saying "No" in different scenarios --no to team sports, to drugs, to alcohol, whatever comes their way. I think it is a great suggestion if you can pull it off.

    My two cents.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Mary S. (---.net308.fl.sprint-hsd.net)

    Date: 12-05-02 18:17

    Being told you can't do something is very hard at a young age. I wasn't diagnosed until this February at the age of 21 with this wonderful condition. I had a lot going for me. I was getting ready to go into the ROTC program for college. I had already completed four years in JROTC and was third in my command and was on every team (including the SEAL team which girls can do in high school). I had scored a 98 on the ASVAB and was offfered my dream. All of that came crashing down. I got very depressed because I thought if I had jumped on the wagon earlier that this wouldn't have happened. But the truth is boot camp probably would have killed me literally. I doubt my ultimate dream will come true but I have choosen a different road. I decided that it was GOD's way of sending me on the right path. I may not become a Dr. but I will be the best I can be. I am now one clinical and one board exam away from my EMT certification because I did not give up. Adapt to your environment and trust in what fate has in store for you. It is never the end of the world because you are restricted from something.

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Tom (---.eosinc.com)

    Date: 12-06-02 20:22

    Just my opinion here because there are obviously people who disagree with me, but I think that there is MUCH more to life than sports. True, kids want to play sports, but kids also feel immortal. Telling them they risk dying is not the same to them as it is to many of us because we have been fortunate enough to experience so much of life that we know that life - even without sports - is worth living. Not trying to make light of it, but kids would be devastated hearing that they can never eat french fries again. I don't think kids can understand the magnitude of taking their own life over a silly basketball game.

    For the record, I was a competitive-level athlete until having to give up my sport. I have not stepped back onto the court since being told not to.Every time I look at my daughters and know that they may be diagnosed with HMC, putting us in your situation, I pray that they never get it (naturally). That's why I'm trying to show them so much of what life has to offer.

    My prayers go out to all of you (us).

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Sports and HCM]

    Author: Sarah B. -Board Moderator (---.dsl.chi.megapath.net)

    Date: 12-08-02 11:03

    Dear Tom,

    Thanks for sharing this side of it that can be hard for parents to see.

    S
    NOTE: This is a post from the previous forum message board.

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