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Parents with active kids who have HCM PLEASE READ!...


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  • Parents with active kids who have HCM PLEASE READ!...

    [Parents with active kids who have HCM PLEASE READ!!!!!]

    Author: Adam (199.88.72.---)

    Date: 12-07-02 00:05

    My name is Adam . I am 22 years old and I have HCM. I just finished reading a post by Michelle, Emily's mom, in which many parents of children with HCM posted their thoughts and opinions. I have to tell you all that I am perplexed and saddened by the stance many parents on this board have taken in regards to the permitted activity levels of their kids who have HCM. Any parent who displays such a myopic view of life that they choose to allow their children to remain rigorously active even after their HCM diagnosis simply is not being a good parent. In no way am I telling these parents what to do, as I am not a parent myself, but I am stating that it is an absolute travesty in my opinion that these parents allow their children to literally "athleticize" themselves to death. I was as athletic, probably even more so, than any kid you ever could imagine when I was younger. From 5 years old up to about 12 years old, I believed I was put on this Earth for one reason, to play basketball. There was nothing else in the world that came even close to the joy I experienced on the basketball court. To this day I bump into people that I knew in elementary and middle school and haven't seen for years, and the only thing they talk to me about is how all I ever did when I was younger was play basketball. They all tell me how they just knew I was going to the NBA because I could play 5 of them at once and beat them. BUT I WAS DIAGNOSED WITH HCM AND ALL THAT WENT OUT THE WINDOW!!! Yes, it was hard. Yes I was sad about it. Yes I was depressed for a time. Yes I wish I could still play the game I love. BUT NO I WOULD RATHER NOT BE DEAD RIGHT NOW AS A RESULT OF CONTINUING THAT DREAM!!!! It is appalling to me that parents simply do not put their foot down so to speak in order to preserve their children's lives. My life is great now. I am one year away from having my MBA and then I am off to law school. It took me a while but I realized what most everybody on this planet already knew; THERE IS MORE TO LIFE THAN SPORTS!!! I don't care how athletic you are or whether you were the best athlete to ever walk the Earth, the point is that life is precious and there is more to each individual than their passion for their sport and their athletic accomplishments. Anyone whose existence is defined simply by the sports they play is simply being pigeon holed, or pigeon-holing themself, rather than exploring and discovering the other things that interest him/her. Sudden death, while not overly common with this disease, is a VERY real problem that CAN occur. Previously I could not imagine a single parent on this planet allowing their son or daughter to partake in activities associated with a relatively higher risk of death. Would any parent on this board knowingly allow their teen son or daughter to get in the car with a drunk driver just because they were on their way to a party and he/she likes to go to parties? Would any parent knowingly allow their teen son or daughter to ride a motorcycle without a helmet simply because they like the wind blowing in their hair?? Would any parent knowingly allow their teen son or daughter to eat 5 McDonald's cheese burgers a day because that is their favorite food? I sure as **** hope not. The reality is this.....THIS DISEASE CAN AND DOES KILL PEOPLE!!! Not everyone who has it will die from it....But some do and any parent willing to take that chance with their own children is, in my opinion, forsaking their duty to protect their kids. These parents seriously disgust me....I don't know what more to say....I can't imagine parents being so irresponsible...I guess it's too much to ask for parents to be parents and help their children through difficult times, rather than just allowing them to put themselves in harm's way. What a horrific example these parents are setting. I am not sorry for the tone in this email because I can not forgive any of the parents here who have allowed their children to die because they would not, with the help and support of their doctor, put an end to their child's COMPETITIVE sports career. No one is saying they can not do light athletic activities on their own. KIDS WITH THIS DISEASE SIMPLY CAN NOT PARTICIPATE IN COMPETITIVE SPORTS. Is it really that difficult to give that up? No, I say it is not. Looking back on my own life now, had my mom and dad "allowed" me to keep playing, I would hate them for it!! How could they allow me to risk my life like that??? Thank god they didn't. THANK GOD!!!!! Wow, I am actually angry at these parents right now. Anyhow, here is a link to a story I posted previously. I hope to GOD that it helps some of these parents realize that there are many other things their children can do that won't jeopardize their lives. Sorry to all of you who read this and feel my tone was inappropriate. This topic simply makes my blood boil. Here is the link: http://www.hcma-heart.com/messages/r...&i=5619&t=5618



    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

    Author: Lori (---.client.insightBB.com)

    Date: 12-07-02 02:06

    Thank you Adam for the support. I am one of the rough parents that made my daughter quit Cheerleading, Swimming, Soccer. She loved sports and it has been a tough couple of years. Now she is a senior and is finding new things and new friends. Adam could you please email her sometime? She wants to go to college in the fall and could use some pointers. How to get through the fatigue, health ins issues, ect. She is a beautiful young women that life has changed.

    But she is starting to smile again.



    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

    Author: Brody (218.145.25.---)

    Date: 12-07-02 03:40

    Adam, having an 18 year old son recently diagnosed with HCM I faced the very question you have addressed, and so eloquently stated your position on. I was blessed in a way that Lee himself decided to stop running cross-country track and Tae Kwon Do. He still enjoys golf and will continue to play once our Korean winter turns to spring. I must say that I agree with you and if I had been pressed, I would have taken Lee out of sports. He is now discovering other talents to explore. Thank you for the post, I hope it will provide enlightenment.


    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

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

    Date: 12-07-02 04:14


    This is a topic that people are going to have very strong opinions about as you obviously do. I'm not disagreeing with you entirely, but I think it is more complex issue. HCM is a very complex condition and varies considerably, even within families. Only a small minority of HCM sufferers are at risk of sudden death. The number of pre-adolescent children at risk is even smaller. Puberty through young adulthood is the "riskiest time." Only a HCM specialist can assess an individual to see if they have any of the risk factors. Of course, even if a child has no risk factors, it is not a complete guarentee, but nothing in life is. My son does not have any of the risk factors at the moment. So I am not going to stop him from playing soccer with his friends. He knows that if he gets out of breath that he has to rest. He knows his limitations, and knows that sports can never be his career choice. If he had some of the risk factors, I would be much more careful about his activities. At the moment his specialist is happy for him to do moderate athletic activities, so I am also. Another thing to mention is that about half of sudden deaths occur at rest or during a seditary activity. We can never be certain about sudden death, but we can be educated by knowing the facts. Then we can make more confident decisions about our children.



    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 12-07-02 06:40

    Thank you for sharing your opinion on this topic Adam. As others have said, this is a topic that always brings controversy.

    My husband and I decided from the day our son was diagnosed (at age 5) to take the advice and WARNING of the cardiologist and allow no strenuous sports at all for our son. And NOTHING that involves running. But, 1 year before our son's diagnosis we had experienced and suffered the pain of what can happen when a child is allowed to "self monitor". My brother's son was 7 years old and being allowed to self-monitor in phy-ed class. His phy-ed teacher was aware of his condition and was also asked to monitor him and keep him on a mild activity level. Now keep in mind this was a 7-year-old. At that age they do not participate in major sports of any kind yet at school so the activity level was moderate at the maximum point. My nephew and his phy-ed teacher were "monitoring" that day when he was doing a very light warm-up "jog" in the gym and my 7 year old nephew collapsed and died. The trauma of this whole event caused the teacher to give up his career and seek counseling. The trauma of this event also caused life long pain in our family.

    My nephew was being treated and followed closely. He had just had a full check-up just weeks before. My brother would give anything to do it all over again! To have his son back and start over with MAJOR limitations! The guilt and "what ifs" became unbearable for him and his wife and it tore them apart. They are now divorced. I know there are no guarantees that even if we follow all the recommendations to a T, that our son will still not suffer from sudden death. But I don't ever want to look back and question if we could have done more! The lessons we learned through our nephew's death were harsh. And one of them is that I don't ever want to live with the "what ifs". When a myectomy was recommended, we did it. When an ICD implant was recommended, we did it. When strict limitations in sports were recommended, we did it. We will do whatever is recommended to better the chances of our son living the longest life possible and to never have to question if we could have done more.

    I can attest to the fact that kids learn to live with the limitations and find other things to do! Our son (now 13)has discovered many things he loves that do not involve running or strenuous activity. He loves bowling, golf, archery, woodworking, pool (billiards)etc... and his friends are very impressed with his talents in these areas. I agree life is far more important then sports!! Having experienced the pain first hand of the death of a loved one at such a young age made our decision very easy with our son.

    I also have to add that I feel children trying to self monitor is much like giving a child their favorite candy bar and telling them they can only have two bites. They can keep it, hold it, smell it, and look at it, but take no more then two bites! Most times this wouldn't work! In my opinion that is the same as asking kids to self monitor. You can participate, but only to a point, then you have to stop, walk away, stand on the side, and just watch. It seems to me it would be better to not give them any at all, then to allow them to have a taste and then expect them to stop and put it away.

    Just my thoughts on the subject. And as I said before, I know this is a very touchy subject and one I doubt will ever be agreed upon by everyone. But discussions that express both side's opinions can be healthy and sometimes gives some new insight to those still trying to decide!


    mom to Andrew (13) HOCM

    Myectomy in '96

    ICD implant in '99


    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 12-07-02 09:00

    Thank you, Adam. Please keep tooting your horn. The parents make the choices for the children until they are 18. Last I checked that was the law in our country.

    HCM is not a choice. Life is a gift.

    My son, Anthony, had no choice when we died suddenly from HCM at age 20, July 2000. For those of you that don't know, Anthony was a football player at Kansas State University prior to his death. Sure Anthony would have been sad and depressed about not being an athlete, but he would have eventually come up with a "Plan B" for his life. If there had been heart screening in high school preparticipation sports physicals, Anthony would have had early detection of his HCM and we could have chosen life.

    My life has changed with the ending of his short life. We do our part to make this a better place. Each of us have choices to make through treatment, education, and involvement. Now is the time to educate people about HCM. Parents and students need to be informed and aware of the importance of heart health in our youth. Through public events and heart screenings at area high schools I will be doing my part.

    Through out this holiday season realize your blessings in this life and turn those around to bless others. What will you do to make this a better place?

    Peace and Love to all,

    Sharon Bates

    Anthony's Mom



    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

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

    Date: 12-07-02 15:30

    Sharon, I continue to be amazed at the strength you and so many others have shown as you move forward, dealing with and recovering from the loss of such a special person. You have done a tremendous amount of work and great service to our young people in honor of the short life of your son, Anthony. I'm sure he would feel the same pride for his Mom's accomplishments as you feel feel for him. We feel so blessed to have learned our son's diagnosis in time to seek treatment. His first symptom was a collapse and unresponsive episode while running. Fortunately, it was not a cardiac arrest at that time. It's difficult to disappoint our children by taking something away from them because the disappointment is immediately obvious. It's a little harder to imagine that our child might suddenly die. No one likes to think in those terms. Adam, you put things in terms very hard to argue with. We had to make that difficult decision about skiing and had to take a firm stand. There's a lot of denial going on sometimes. When we took the stand, we could then talk about alternatives as opposed to arguing about to ski or not to ski. It's never easy, but then life is one challenge after another. Just remember, there are a lot of kids who just aren't good enough to make the team, they find something else to do and get over it, one way or another.


    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

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

    Date: 12-07-02 18:06

    I am a mother and a grandmother that has very severe HCM, I have 3 children and 2 granddaughters. My two sons have been tested they are in their 30's and neither one has this condition, my daughter is also in her 30's and never has been tested and she will not be tested. My daughter has the the 2 children they are age 11 and 16 both of them play basketball, the 16 year old granddaughter plays in high school she is very good and the college's have already started to watch her and send her letters. My problem is my daughter will not have the 2 girls tested.The oldest one was tested about 2 years ago and nothing was found, but she has told me that she gets dizzy and lightheaded even when she is not playing basketball.

    What is strange I just had a talk with my daughter tonite about all this and she got very angry with me, and than I sign on and found this site and read this.My question is what do I do to help keep my grandchildren safe. Any suggestions I would appreciate.Thank You



    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 12-07-02 18:47

    Hi Priscilla,

    It must be very difficult for you. But your daughter has got to be proactive in the well-fare of her children. In a loving way, lead her to this site. Print out these postings if you can. Of course, your granddaughter's symptoms may be from something else. At the very least, your granddaughter should be seen by her family doctor.

    Show her the postings. Show her my reality. Nobody wants to walk in my shoes. I would not wish that on anyone. Your family has something our family did not have...family history of this disease, plus the support and love of everyone on this board.

    Early detection and knowledge is your families power. Help her use her power as the mother of your grandchildren.

    My Blessings to you and yours!




    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

    Author: Karen (---.islandtelecom.com)

    Date: 12-08-02 07:07

    I agree fully with you. I have a 12 year old daughter, who at this point has not been diagnosed, but since myself and my mother have it, I keep a very close eye on her. I have never allowed her to play competitive sports, just in case. Maybe I am a little over protective, but I feel it is better safe than sorry. So does exercise, and ski, and leads a very normal life. Keep up the good work, telling others about this disease.


    [Re: Parents with active kids who have HCM PLEASE READ!!!!!]

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

    Date: 12-08-02 09:43


    I think that Adam has an excellent point. The tough part is when you get to the teenage years and your kids can do more on their own when you aren't around --like a pick up game at college where one young man just died.

    But I hope that Adam's post has given some people pause and will open up more conversations between parent and child about this difficult issue.

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