If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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  • Parents with HCM kids

    [Parents with HCM kids]

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

    Date: 12-10-02 16:25

    Lisa I read your post regarding being a parent with a child and also to live with this disease. It is so deep of an issue. The gilt, the disapointment for your children, the daily struggles for ones self and their childs. My new challange is teaching my 18 yr. old about saving energy for the real important things (management)

    Trying to figure out the whole insurance issues for her when she graduates from HS

    How many 18 yr. olds want to deal with these issues? The career choices.

    Wow I could go on and on. What a whirlwind this is.

    Thanks for letting me vent regarding the challanges we deal with.

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

    [Re: Parents with HCM kids]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-10-02 18:00

    Lori - I know it is hard and I know that many others feel the same thing. this is not a disease of one person it is a disease that includes the entire family, as many chonic illnesses do.

    Stay strong, do your best because that is all anyone can do. And know regardless of what you may think..your kids know you love them and that you are doing your best to keep them safe and well.

    Take Care,

    Lisa

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

    [Re: Parents with HCM kids]

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

    Date: 12-10-02 18:32

    Thank you for your words of encouragement.......I need them.

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

    [Re: Parents with HCM kids]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-11-02 04:26

    Lori,

    You are very welcome!

    Lisa

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

    [Re: Parents with HCM kids]

    Author: Amy N. (---.tnt4.seymour.in.da.uu.net)

    Date: 12-11-02 17:24

    Lori,

    Although I've got another 16 years before I get to where you are, I've worried about some of the same things you mentioned.

    I have a basic life insurance policy through work for my kids. I figured if anything happened that would help cover costs. It was something I didn't want to think about. Then with all of this I looked at it in a different way. Not that I thought my child would die, but that I wanted him to have something in place for his family. So I got both of them life insurance. We received a letter for my son that said he was denied, but then the next day received a policy. I don't know if it was a mistake, but I make sure that I make those payments on time.

    Even though my son isn't quite 2, I've had to come to terms with a lot. My husband is a dairy farmer, his father and grandfather were both dairy farmers. My father also farms. Farming is in his blood. Maybe he won't choose to farm, but what if he does. Or what about just helping out when he's a teenager. Putting up hay and straw is one of the things I worry about. So maybe he'll just have to be the tractor driver. And maybe in 10-12 years they'll have new technology that will make that not so physcially demanding.

    I was raised with the idea that I can be or do whatever I want - as long as I worked hard enough. I know that with Ryland we might have to adjust that. We will still support him in his career goals, but we've got some other stuff we have to remember now. I know it can't be easy for you or your daughter. College is kind of a scary thought also. Is she staying in state? I only live an hour from I.U., but I work for Purdue off campus so I'm up their about 3 or 4 times a year. My sister teaches evening communication classes at I.U.P.U.I. in Indy.

    The first few months I spent a great deal of time reading, searching, etc. It drove my husband nuts, but it made me feel so much better just knowing the possibilities and what others have experienced.

    Amy N.

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    [Re: Parents with HCM kids]

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

    Date: 12-12-02 04:55

    Thanks Amy.......she is just not sure. Christian was a really strong student until HCM. Now she misses a lot of school due to fatigue, Drs Appt., just not feeling well. ect you know the stuff. Her grades are ok but not great and can't make a decision. So she thinks she going to try an in state school and take general studies. She must take 12hrs to stay on insurance. Hopefully she can handle that. She knows she wants to go and live on a campus. ?maybe Vincinces for a year to see how things go? Any suggestions.

    See ya

    Lori

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

    [Re: Parents with HCM kids]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-12-02 06:40

    If my niece reads this I welcome her comments

    Stacey is in her 1st semister at college - she is only 20 minutes from home living on campus. She is closer to the hospital at school then home, should she need it. Letting go is not easy - knowing that there are extra risks for kids with HCM makes it a little harder. I will now brag - Stacey is doing great in school, I am very proud of her... not only grades but involvement - she is a part of the community and she is doing very well.

    Most schools are happy to work with you should you have special needs, just ask. In some cases having a disability may make some scholarships available. Schools love kids who overcome challanges and HCM is a challange - be possive it may work out better than you thought.

    Yes, HCM is a disability - we may not "look" sick but we can not function 100% normally.

    Lisa

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

    [Re: Parents with HCM kids]

    Author: Marionette (208.45.164.---)

    Date: 12-12-02 09:14

    My husband has this disease, should I get my 4 year old daughter tested?

    Thanks

    Marionette

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

    [Re: Parents with HCM kids]

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

    Date: 12-12-02 09:17

    Dear Marionette,

    Yes!

    The general guidelines are that children get an echocardiogram every year to 18 months till their 20s and then every 2-4 years till the 30s and then every 5 years. Depending on the family history, your daughter may present in her childhood years, her teens, 20s, or later.

    Sarah

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

    [Re: Parents with HCM kids]

    Author: Marionette (208.45.164.---)

    Date: 12-12-02 09:25

    I really don't understand everything about this disease. We just found out that my husband has this disease two days ago. The doctor my husband went to told us that it was not an inherited disease. My husband is taking this very hard and I don't know what to do. Thanks

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

    [Re: Parents with HCM kids]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-12-02 09:31

    Marionette - I have emailed you a note. Please do not get overwhelmed. Go slow and get educated. We are here to help you along the way.

    Lisa

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

    [Re: Parents with HCM kids]

    Author: Debbie Thurland (---.in-addr.btopenworld.com)

    Date: 12-12-02 11:58

    Hello, I have recently found out that my just 2 yr old daughter has noonans syndrome a genetic disorder, one of the complications is HCM our health professionals seem to be very cloak and dagger about telling us anything and we really dont know what the future holds for her. has anyone experienced an infant with this condition? what happened to you and how did you get more info.

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

    [Re: Parents with HCM kids]

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

    Date: 12-12-02 12:46

    Dear Debbie,

    Joining the HCMA is the best way to get all the info on HCM --and reading this web site (all of it) and the message board.

    S

    Dear Marionette,

    Your hubby's doctor clearly doesn't undrestand HCM. Please talk to Lisa asap about seeing a specialist. It is imperative to do do. Most HCMers live a long, full life, but adjustments usually need to be made and you need to be properly evaluated to avoid any pitfalls and incorrect treatment from non-specialists.

    take care and keep breathing!

    S

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

    [Re: Parents with HCM kids]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-12-02 15:01

    Debbie - Noonans is something we see from time to time here at the HCMA. The disease is variable and therefore it is likely hard for your doctor to give any clear answers if they do not see much of it. With all due respect to the doctor rare disease are not easy to manage when you do not get the chance to see it much. If you contact the office I will be happy to get you in touch with some other noonans families.

    FYI - I know one child with HCM and noonans who is doing very well, she is 7 and full of energy and smart as can be! Anyone who was at previous HCMA meetings would know Amanda, she is a doll!

    All the best,

    Lisa

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

    [Re: Parents with HCM kids]

    Author: Debbie Thurland (---.in-addr.btopenworld.com)

    Date: 12-13-02 12:42

    love to get in touch with other families thankyou for your time in re3plying to me

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

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