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  • What do you say to grown kids?

    I have a question specifically for other parents of grown children. I have contemplated writing this for a couple of weeks, but don't know exactly what I want to ask, so please be patient and excuse me if I ramble a bit. My 25 year old daughter is waiting to be checked for HCM at least in part because she has been wanting to make sure her medical insurance is OK. Perhaps she is also waiting because maybe she is trying to avoid reality. She has a few symptoms that she volunteered, without my telling her anything I feel, that make us suspect that she has HCM. In addition she has always had an unusual level of tiredness and was diagnosed with exercise induced asthma ten or so years ago. But this is not what has prompted me to write. What is prompting me is, however, the direct result of this board and all of you.

    When my daughter was tiny she threw temper tantrums constantly (or so it seemed to us and many others) from age 11 months until age 5. I was unable to work because caring for her seemed more important. I felt like a failure, stupid because I could not control her behavior, and the world's worst parent. She had problems with pain going to the bathroom and sometimes blood in her urine, so I thought that something was wrong physically and took her to many doctors, to the point that docs began to treat me like I was crazy. I was so ashamed of my inability to solve these problems and cowed by the docs that I never told anyone that I had a PhD in biology - even my closest friends (we had moved to a new state when she was 2). When she was 4 we discovered that she had a serious kidney defect and had been in pain from birth, the wonderful urologist we found told us. At 5 she had major surgery, things went badly, she had some resultant problems from the surgery, and she continued to be sick pretty much constantly until age 9. But as soon as she got antibiotics for the kidney infections at age 4, her behavior improved dramatically and we were able to predict when she was getting another one by when her behavior deteriorated. She alternated kidney infections with strep throat every two weeks for several years until I requested prophylactic antibiotics. Eventually after a tonsilectomy at 9, she improved. But, as those of you know who have had a child with major effects from HCM, she never really had a childhood. Perhaps the moment of realization came for me when she was about six and we went to McDonalds for lunch. The play area was crowded with children half her age laughing and playing. Michelle stood at the bottom of the tiny slide (what are they? maybe five steps high?) looking up at the stairs longingly and then turned slowly away, clearly having decided that it was not worth the effort. My heart broke for her.

    We were told all along that she has residual kidney damage and that any pregnancy will be a high risk one. I had looked online several times but did not find much about it. A few weeks ago Michelle told me that she was having some back pain and a few symptoms of kidney problems. I told her to go to the doc right away, but she has not done so. I think she is very reluctant to go to doctors because her childhood centered so much around her problems. Several times I have looked online to see what I could learn about her problem, which was bilateral vesicoureteral reflux (VUM). Similar to HCM, it is often not too serious (antibiotic treatment and time can make it go away in some cases) and relatively common. Unfortunately, hers was serious. I also knew that it was congenital, but was never sure whether it was hereditary. Since finding this board about 10 months ago, I have looked to see if there was anything similar for her problem. After talking with her a couple of weeks ago, I decided to persist until I found something. I found a question and answer board, which is closing May 1. From that I learned that the condition is hereditary apparently due to a dominant allele and that my daughter's children will have a 66% chance of having it. (For you biologists reading this, I don't get the 66% chance either, but I was able to find the research data that supports that number, so ...). The good news is that probably knowing that potential, her children can be tested even before and immediately after birth and treated with antibiotics to prevent kidney damage. But, I think that for all of us, having lived through her problems, we will have a hard time if her children are diagnosed with it.

    So, with all that background, here is my question for all you parents of young adults: How do I tell my one-and-only child (we lost others before birth) that she must be checked for a second serious genetic defect while knowing that she has one already? She has already said, half jokingly, something to us to the effect that we certainly gave her a heavy load of hereditary problems (there is a lot of diabetes on both sides of the family), but I don't think she knows that the VUM is hereditary, or at least how probable it is that her children will get it. Now I am asking her to get checked for another major hereditary illness - HCM. I know she is an adult and that decisions about having children are hers and her husband's. I know that she has to learn to live with whatever God allows to come into her life. But my heart is breaking at the thought of the kinds of decisions she has to face at this age. She is a brilliant and creative young woman and married to a wonderful husband, so most of the time I am just deeply grateful that she lived through her teens without all of us dying! But at the moment I am struggling with what I will say to her when I go back home in July. How can I help her as a young woman face painful decisions that I never had to face, because I did not know the problems were there? I saw my mother watch my sister and me for heart problems all the time we were growing up. Even though we did not know about HCM, apparently doctors had told my mother's family that the problems her sisters had was hereditary and that we should be watched. Mother (and her family) associated this with rheumatic fever, so whenever we felt unusually tired or had sore throats, we had to sit on a chair so mother could feel our knees.

    So, I guess my questions are related to how we tell this next generation not to live in fear of all the things that could go wrong. How can they live their lives free of fear when we have so much more information than in the past? I am glad I know about HCM so my family can be checked and treated. I am glad to know that my daughter's children must be checked for VUM so that maybe they will not have to live through the pain that she has had to live through. But, the I am not glad for the worry and wondering what is going to happen that comes from so much genetic information. Any suggestions?

    Thanks for listening, caring, and helping!
    Rhoda

  • #2
    Re: What do you say to grown kids?

    Rhonda

    I have 2 children, 1 daughter 26 and a son 28, My daughter has a disease called FAP of her intestines in fact she has no large intestine at all we were told by her doctor that if she didn't have this surgery she would be dead in 5 years from colon cancer they took over 150 polyps precancerous out of her colon, since i was diagnosed 1 and a half years ago my family has been getting tested, both of my kids have kids of there own and so far my daughter is ok no HCM, but my son has it, the doctor says a mild case of it, 2 of my grandkids have been tested my daughters 2 and they are fine, my son is getting his 2 boys in soon, i did feel in the beginning of all this i wish that i hadn't brought them into a world with this, but i don't regret having them because they have brought alot of joy to my life, i couldn't imagine life without my kids and she will feel the same way about things in her own life, you know my daughter surprized me and went right away and got checked for HCM and i thought she would be the most difficult one to convince but it was my son, see my daughter also showed more signs of having HCM with the palpitations but her doctor also said it was common with having the problems she has with FAP with the stress of it all, it is better to find out now, it almost made mine easier to live with knowing my son has a mild case of it, i have moderate to severe according to my doctor, i just sat down and cried knowing his is mild. Now i just hope he takes care of himself and it stays that way, i think i was more afraid my kids would blame me for giving it to them but my son said mom it's ok it's not your fault no more than it was my dads fault for giving it to me, it's life and life is what you make of it, if your daughter has been through all of this then she is a strong person and i think she will be ok, sometimes i think we learn from our children just as they learn from us

    Good Luck

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

    Comment


    • #3
      Re: What do you say to grown kids?

      Dear Rhoda, I was so moved by your post that even though I do not have adult children I felt compelled to reply.
      2 yrs ago was the first time my now 12 yr old son was checked for HCM. He didn't ask alot of questions, I suppose he simply put his trust into us and left it at that. He now has to begin getting Echos regularily and although he knows why, he doesn't know all the details. I don't want to have to tell him (yet) just how serious this is. He plays hockey and loves it, I don't want to have to take away the things that are important to him, or have him worry every time he plays, that he may die. (I think I worry enough for both of us). I have decided to tell him the details if or when he developes HCM.

      Telling my older sister was really hard for me. She like me overreacts to everything, and she has 3 young children, that she already worries endlessly about. I felt responsible-I felt that if they(anyone in my family) did have HCM that it would be my fault. I know thats dumb. I sure prayed that no one else would have it, I didn't want anyone else to suffer.

      People can really surprise you sometimes though, my sister took it really well, and although I know she was scared for awhile, she got right in and got checked out. She said it was better to know and get treated. She is right.
      Both of my sisters have similar symptoms as I have yet they both checked out fine. So you can't always tell by the symptoms.

      My dad on the other hand , who was always strong and unemotional, refused for along time to get tested and to this day he doesn't like to talk about HCM-its too scary for him. (If he doesn't talk about it, then it doesn't exist)
      As I am sure you know, it is so important that your daughter get checked out, and really the only thing you can do is be there for her, being a parent is the hardest job, especially at times like this.

      I'm sure I wasn't much help, but I just wanted to say something...anything, to say I understood. Your family will be in my thoughts.
      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


      • #4
        Re: What do you say to grown kids?

        Rhoda, first of all you need a big hug. You've done a great job with your daughter. I can partially relate to the trouble you have had with her. My own son used to throw temper tantrums when he had ear infections because he didn't really feel the pain to tell me about it and he had few other symptoms. Try telling the doctor that the reason you're visiting today is that JR threw a temper tantrum and you suspect his ears.

        Also, my nieces, 2 of them on both sides of the family and unrelated to one another, have had kidney trouble. One sounds sort of like your daughter. She has a double ureter on one side that has caused a lot of trouble in the past. The other has a problem with a physical blockage that causes the reflux.

        I don't know what you should tell your daughter, but I know that she will be fine. She might worry at first, but she will think it through and do what she needs to do. In the meantime, you know we're here for you.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: What do you say to grown kids?

          Hi Rhoda,
          Boy, you don’t have to go out borrowing trouble from anybody do you.

          First of all, you have to tell your daughter the situation. It would be insanity not to. I would suggest telling your daughter and son-in-law together. They are both involved. Also, you have to remember that there’s a fifty, fifty chance that she doesn’t have the condition – and if she does, it’s best caught and treated early.

          I’m sure I’m only repeating what you already know, so I’ll just shut my mouth. How are you doing on those Chinese herbs?
          Burt

          Comment


          • #6
            Re: What do you say to grown kids?

            even within families, diseases present very differently. my brother is much worse off than i am, for example. your daughter's children very well may have mild forms --if they get it at all. and if you are watching for it, you can make it much easier on everyone.

            i have colon cancer, allergies, and coronary artery disease on one side and osteoporosis, HCM, and deafness on the other. i also have hypothyroidism and kidney stones all on my own. i will not be having kids.

            if your daughter wants children more than anything, another genetic disorder isn't going to stop her and knowing about it will only allow her to plan better.

            do not present it as the end of the world but as a piece of information that will help her give her children a better life. because it is.

            best of luck,

            sarah

            Comment


            • #7
              Re: What do you say to grown kids?

              Rhoda, My empathy is for you today. All I can tell you is my oldest daughter who had many sx's of HCM recently tested negative. For me me that is a great relief, 2 more to go. As an individual who has HCM I wonder what I may have done differently had I known in my early years. I know that to not have my children would probably have tormented me . I wanted them because I wanted to give something of myself to this world and to give three individals an opportunity to soar . So far this has all happened irregardless of disease and the inequaties of life that can befall each of us. Life will never be perfect and we all suffer at times through it. I remember from a small child I asked my mom, " mom can I have babies?" She said, "Oh yes Pam you can and will have your babies." I also asked if I had to have a husband to have them . She said," Oh yes Pam you must have a husband." I did not know what role they played so didn't think I wanted one then. The desire to have children can often be very overwhelming and am glad I did not have to face such a decision. When 1st Dx'd at age 47 I found I had a very severe form of this disease. After surgery though much improved I still have many effects that are not so pleasant. Would I have changed anything without removing my freedom of choice ... NO! I wish at times I could have known back then and I would not have felt as guilty about being different and pushing or being pushed to work harder when I struggled to just survive. I think that my mom who did a lot of the pushing and taught me how to push myself would feel less guilty today as she often verbalizes. We cannot live in reverse as in what should or could have or might have happened. We can not even predict that all will go well in the future if we do one thing over another. We must go by heart and instinct for so much. I know that God has a plan for us all and he certainly had a plan for me. There were too many close calls for me not to realize that I survived for a reason. Based on my personal experience, for your daughter , knowing she has a genetic based disease could help her come to terms with much of her past . As far as the HCM, cross that bridge if and when it comes to fruition. By all means tell her what you have learned and support her unique individuality to choose what is best for her . Rhoda you know you have helped give her all the tools she needs and you will still be there to help sharpen them if they become dull , mothers are like that aren't we? My thought and prayers are with you as you embark on this journey. 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


              • #8
                Re: What do you say to grown kids?

                You are even more amazing than I thought! WOW you have been down some difficult roads...but look where you ended up.

                I would like to post more..but something I have an urgent call I have to take.
                More later

                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
                  Re: What do you say to grown kids?

                  Rhoda

                  I'm so sorry i miss spelled your name, i'm just not with it lately, i will be glad when my brain functions right with having this myectomy

                  Shirley
                  Diagnosed 2003
                  Myectomy 2-23-2004
                  Husband: Ken
                  Son: John diagnosed 2004
                  Daughter: Janet (free of HCM)

                  Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                  Comment


                  • #10
                    Re: What do you say to grown kids?

                    Nothing wrong with your brain sweetie. We all fall victim to an Oops now and again.
                    Burt

                    Comment


                    • #11
                      Re: What do you say to grown kids?

                      Thanks to each of you for your support. There were tears in my eyes when I read your answers. Good tears, that is! Thank you!

                      Shirley, I was not offended by "Rhonda". I have been answering to "Rhonda" for years!

                      I know that my daughter will be all right, and I suspect will decide to have babies regardless of the outcome of HCM testing. I certainly hope so! I want grandbabies to spoil! If not, maybe we can get some Chinese babies in our family! Michelle comes from pretty tough stuff. My mother was born with no feet, but supported her parent's family of 7 (three seriously ill with heart or lung problems and two small nephews) singlehandedly working in a sweatshop 10-12 hours a day five days a week starting at age 13. She graduated from high school at 28, married just before she turned 39, had two daughters in her 40's , worked at hard manual labor jobs to help my father (a church janitor) to support us, and died of heart failure at 70! We don't come from a family of quitters nor do we look at life from the dark side. We are deeply grateful for the good things God has blessed our lives with. My mother would have described her life as blessed by God, not as dark or grim. I look at my life and how much I have been able to do and I am deeply grateful.

                      Tomorrow we start a week's national holiday. (Remember the Moscow May Day parades of the Cold War years? We are celebrating that holiday! ) We will get to travel around China for the first time. This is one of the big blessings! If you think about it, pray for our safety, especially that I won't get in any climbing situations. I will be offline most, if not all, of the time until May 9. I'll let you know then how much fun we had!

                      Burt, I can't say for sure that the herbs are having any effect. My back seems the same as always. I am still having less fluid retention and as a result less shortness of breath. I have actually walked at normal speed a couple of times lately without chest pain and sob! However, this week I have had six episodes of near fainting, two of them severe enough that I fell into a chair that I happened to be standing in front of. If these persist, I will have to try something, so I may have to stop the heart herb to see if that is the cause. I have had fainting spells before, but never clustered like this.

                      Thanks again to all of you for your encouragement!
                      Rhoda

                      Comment


                      • #12
                        Re: What do you say to grown kids?

                        Rhoda, Please take care of yourself, have a great and safe trip - one more adventure stored up to tell the grandbabies about. We'll be waiting for a report on the trip.

                        Meanwhile, this original thread is quite a thought-provoking, emotional issue. Each of us has so many individual things to consider, so many things complicate each person's situation. I'm glad so many have been able to share and offer different insights. There are those of us who just aren't ready or can't find the words to share the thoughts and feelings, but you all remind everyone how "not alone" we all are. I guess we all find the strength to do what we have to do or what we really want to do, and our children will also. Linda

                        Comment


                        • #13
                          Re: What do you say to grown kids?

                          I’m old, but not Irish, yet I believe an old Irish blessing may say it best.

                          Go n-éirí an bóthar leat
                          Go raibh an ghaoth go brách ag do chúl
                          Go lonraí an ghrian go te ar d'aghaidh
                          Go dtite an bháisteach go mín ar do pháirceanna
                          Agus go mbuailimid le chéile arís,
                          Go gcoinní Dia i mbos A láimhe thú.

                          May the road rise to meet you
                          May the wind be always at your back
                          May the sun shine warm upon your face,
                          The rains fall soft upon your fields
                          And until we meet again
                          May God hold you in the hollow of His hand.

                          I hear that children in the small towns just love balloons – but it’s probably too late to pack in a supply. Have a blast.
                          Burt

                          Comment

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