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childrens forum.. yes or no

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Lisa Salberg Find out more about Lisa Salberg
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  • childrens forum.. yes or no

    Some have suggested that we provide a forum for young people with HCM (ages 11-18 or so) a private secure place to talk to each other. This without beiong overwhelmed with information of a medical basis that may be overwhelming or harmful. To create our own domain name and allow acces by password only to enrolled members is one way of creating this form of communication. The biggest question is will it get uses?
    So I ask you this ..parents of children with HCM would you like a form for your children that would allow them to communicate with other kids in a moderated format?
    A simple yes, no or maybe will be fine to get us moving toward evaluating this potential program.
    Thank you for your input.
    Lisa
    1
    Yes
    100.00%
    1
    No
    0.00%
    0
    maybe...add comments below
    0.00%
    0
    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)

  • #2
    Lisa: Do you mean "Forum" as in a message board area? or a separate website devoted to teen issues with HCM?

    Thanks for the clarification.
    Thanks, Tim
    Forum Administrator

    Comment


    • #3
      Tim - I fixed it...thanks...thats what happens when you type with a fever!
      ..currently 101.2
      Hope it ends soon!
      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


      • #4
        Well, looks like I'm the lone "no" vote so far. I have strong feelings as a parent in that I always wanted to know what my minor children were viewing. I think they can be guided by their parents to view pertinent postings, info, etc. Let the parents choose what they look at, then the parents will know what they have seen. It can be printed out and handed to them, viewed on the screen, etc. Also, if the children post something and it is viewed by the adults/parents, it gives others a better understanding of what their children may be experiencing, even if it's not a posting from their child. Let the parents decide if they think correspondence with another child/teenager will be beneficial. If it's there for all to see, misconceptions can be corrected in a timely manner. The kids need to be involved in their own care and wellbeing, it's the beginning of the rest of their lives, they're lifestyles are being established now. Let's give them a good foundation to grow on, so yes, have them involved, but not too much open space. Does that make me a control freak? Linda

        Comment


        • #5
          Maybe

          I posted a maybe. It all depends on what you are suggesting. I am not in favor of a separate website devoted to teen information. However, I would support setting up a separate teen discussion room (forum) in this message board where teens can discuss issue specific to their needs. But I would not recommend limiting the access: Allow everyone to view and post but ask a responsible teen to help moderate and direct discussion accordingly.
          Thanks, Tim
          Forum Administrator

          Comment


          • #6
            Hello,

            I voted yes after asking my 19 year old daughter if she felt it would be useful. I think it would be great for her to be able to talk to other young adults who have this disease. She hears enough from me! I'd love to see her talking to peers discussing their meds, symptoms or body image concerns due to that new device implanted.

            I know she's out of the age range that you mentioned, Lisa. Actually, I think the age group (11-18) may be a bit too young. Maybe more like 16/17 years old as the low end & maybe up to ages 21/22...it's only a suggestion. I love the idea of omitting the medical info - it can be frightening.

            Feel better Lisa!

            Comment


            • #7
              I also posted a maybe. I agree exactly with what Tim Stewart posted below.

              Bob
              Cleveland Myectomy Crew
              Member since November 2002

              \"Chance favors the prepared mind!\"

              Comment


              • #8
                I've thought about this for a while and I also agree with Tim. I'm not too sure that the forum should be closed to the kids only.

                Reenie
                Reenie

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

                Comment


                • #9
                  I see this issues from many sides. I am unsure of how to handle it myself..thats why I asked you all for your input. Here are some thoughts and I offer these NOT as the HCMA Pres. but as a person with HCM who was diagnosed at age 12.
                  I must say something before I go any further - Mom or Dad if you are reading this do not get upset I am simply talking about how a 12 yr old girl felt (I know you had your reasons for handleing things as you did and I respect that.)
                  Now when I was diagnosed (1979) to research meant you had to go to books and look things up, and I did what I found was in my school library it was a paragraph long and used words like "sudden death", "rare", "progressive" and was rather scary for a 12 yr old girl to read while hidding in the back corner of a library away from her friends.
                  At home we did not talk about it much. Now any parent of a teen age girl knows that girls become very odd little creatures from about 12-16 ( I can say this because I was one ) I did not ask any questions because "what could my parents possibly know anyway".
                  I made up many many choices for my life based on the 1 paragraph I read in a textbook that was likely several yrs old already with limited information and a death sentence in front of me (OK thats what I though at the time). I did not feel that school was worth what little time I had on earth (no joke I really thought that).
                  I would not talk to my friends because I thought they would treat me different. I built up a wall around myself 10 ft high and 10 foot thick because I was not going to let anyone in to my reality that my life was going to be very different then theres - I thought they would all live and I would die (what got me really upset was all the fun they would have without me!) So I did not talk about it to anyone...until I was about 18 then I talked to Lori, my sister, who had shared many of the same feelings I had explained to her.
                  My point is this parents your kids are going to seek out information, they are going to draw conclusion from that data they read. There is a great deal of bad information out there, some old, some only showing one side of HCM, some misleadingly reassuring.

                  Linda if you think that your boys will not or have not sought out information on there own (before the age of 18) I think your wrong - if it is about HCM or WWF wrestling or music or well you name it...kids are always seeking information. I know if my mom gave me information I would have thought it to be "cleaned up" or "edited"..and that meant the "good stuff" must be missing..OK I was a brat but that is how I thought.

                  Many of the kids have been here to the site and in fact I have gotten emails from a few kids over the yrs mostly saying "thanks for the site" not really "asking questions".

                  I see the challange as this - how to provide a kid friendly enviroment that parents like and kids think are "cool"? How to allow kids to talk like kids and to be kids while providing information and teaching them the best ways to take good care of themselves for now and there future?
                  Age range - well thats a bit open I just put some #s for thought - I did go as young as 11 because there is a young man who was diagnosed at 11 and is very mature and I do think he would benfit from this..but he is a mature 11 yr old.

                  This is simply in thought mode... so please share your thoughts I really love to hear them.

                  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
                    Lisa, I agree, they are getting that info, and that's why I think it's so important for us to know what they are getting. If we lock out adult supervision, we don't know when they have incorrect info that could be devastating, as you learned early on. If we know what they are seeing, we can ans questions, (if they ask), with a little bit better idea of where they are coming from. If I see something pertinent on the board, I will suggest to my son that he might want to read thus and such. Above all, we want the website to be credible. No one knows better than I do, how quickly a child can mature under difficult circumstances. Let's make sure they have the best info to go on, not what some other person read in an outdated textbook. I guess we're all probably hearing the original question in a little different way. For those of you who don't know me, my children are now adults(age-wise )so the decision won't impact me in the same way as it would have a few yrs ago. Linda

                    Comment


                    • #11
                      my two cents

                      Hi,

                      I don't think anyone was suggesting a whole other site for kids, just a topic area like research, ICDs, etc. I think Lisa was suggesting "locking" it like the doctor section to prevent outsiders from targeting the kids section.

                      One way around that is to require each kid who registers for a kid section to have a parent/guardian co-register at the same time. I don't know how this would work technologically speaking (or if it even can) but it is something to think about.

                      My mom and dad just told me "not to worry" about it. Well, that was ridiculous advice (I'm not apologizing to my parents here, ala Lisa as my mom doesn't read the board and my dad is no longer burdened with matters in the material world).

                      I didn't have the internet, but I had the Merck Manual and I had what I could see, which was that my mom was very sick, and often.

                      My mom basically told me to ignore it and never tell anyone about it. My response was to over-report symptoms and tell _everyone_. Neither served me well and I have spent a long, long time trying to undo that.

                      What I'm saying is that you can mean well, and think you are doing the right thing, but your kids may not be able to tell you what they really need.

                      S

                      Comment


                      • #12
                        Clearification - "lock OUT"...not the parents..all the people who seek out kid only sites to pray on kids for less then pure reasons... Parents would be welcomed to visit...see this is the trick... how to let kids talk and keep them protected from strangers. It is rather like sending the kids to the mall...you know it is a safe place but you also know there are some people there that could cause harm... how do you protect them? You teach them how to act, what to do if you feel in danger etc...
                        If we all lived near each other it is simple...get together and meet for a night and let them talk and get to know each other...but we can not do that...so I am LOOKING for a way to provide that for them on the web.... maybe there is a form of technology I am missing? maybe there is a way to a a moderated live chat...only keep it running for 1 hour per week with several adult moderators??? I am thinking out load here and looking for help??? SO...help???????
                        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
                          Well, you won't get computer help from me. Remember, I'm the one who booked 3 hotel rooms for one night and how many? airplane tickets for the same flight. Linda

                          Comment


                          • #14
                            live chat

                            Yes, a weekly or biweekly live chat would be one way to allow kids to talk to each other --the chat would be easily monitored by me, Lisa, Linda, or we take turns.

                            However, chats work best when there is a topic or it is always at the same time every week or every two weeks and then you have to see if the kids want to participate at that time.

                            S

                            Comment


                            • #15
                              I have to put my thoughts here because I have 2 children with HCM both diagnosed at birth. My daughter is now 11 1/2 years old. She is very bright and asks many questions regarding her heart disease. Yes we even have discussed her future ability to have children. She really understands her limitations as well as non limitations for her future. My son who is 8 is also very bright and asks questions regarding his heart disease as well. He even watches his echo and asks his PC very pertinant questions that the doctor is amazed he asks. I think that kids are very inquisitive and will look for information anywhere they can too. I think they will only ask parents if they feel they will get honest answers and can trust their parents answers. I agree with Lisa that kids are always searching. I think my kids would benefit from a kids area on this website. They are the only 2 kids in our school district with this disease and have no one else their age to discuss this with.

                              Just my thoughts.
                              Michelle - mom to Krista and Tyler both HCM
                              Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                              Tyler surgery: 1/98 myectomy

                              Comment

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