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

Announcement

Collapse
No announcement yet.

Septum growth with age..

Collapse

About the Author

Collapse

Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Septum growth with age..

    Hi all.. My 5 year old has HCM (passed down from yours truly). His current measurements are very thick and I was wondering if there are any medical stats showing if the septum generally gets thicker as a child grows, stays the same size or what? I know that "it depends".. but what is the most common? Is it wrong to assume that a 5 year old with a large septum will have a larger one when he is 12 (even though his heart will grow, the septum will continue to grow at a faster rate?)?

    -Darren

  • #2
    Darren,

    Unfortunatley you are seeing the variable manner of this disease in your own home. In general we often see kids with large measurements do not 'average out' with growth. They do not 'normalize' with growth and in fact often times they get larger with growth. Your son is very young and we will not know for sure what the measurement will be when he gets through puberty- that is the time of the most significant change.

    I would suggest a consult with one of the top centers for him sooner than later - his case is going to be more trick to cover then yours has been. I am sure this entire matter is not very easy for you and your wife and if there is anything we can do - please let us know.

    Best wishes,
    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


    • #3
      HI Darren Im sorry to hear that your son was diagnosed so early,I cant comment to your question because I dont know.I will pray for your son that he will live a long, full, healthy life .I also pray for you and your wife that everything will go well .take care and remember your not alone.all the people in the hcma walk with you. take care mike ob
      One day at a time.

      Comment


      • #4
        Darren, Thinking of you and your family, Linda

        Comment


        • #5
          Thanks

          Thank-you all for your replies. Lisa, that was my fear.. the specialist that we see every 3-4 mos. for Caleb (my son) said that nothing is "for sure" but generally the growth continues. It seems that if things get much larger, he may need some form of medical "procedure" (nice word for very serious surgery). Mr. Obrien, thank-you for the Prayers! I covet them.. I can't imagine losing my little boy. The one true rock on this planet is Jesus, I don't know how people can handle w/o Him.

          Comment


          • #6
            Darren,

            First off Happy St. Pats Day! Second, please know that this is a long road and that we will be there for you every step of the way. You will be dealing with issues you yourself have not had to face with your own heart. I know that you are / have been very active and that you wished that life for your child.

            There is a poem/story I will look up and it speaks of planning a trip it Italy and how the traveler had all these hopes and dreams and how wonderful Italy was going to be. However when the plane lands he/she finds him/herself in Holland - it is NOT what he/she had in mind at all. Once in Holland they found it wonderful, beautiful and more then they ever imagined -missing Italy was not so bad - look what they gained by seeing Holland. The story/poem was written by a woman with a child with a disability. The basis is really eye opening and pulls into focus 'the big picture' very well.


            I hope this little story and your faith stay with you and that you always know you have the HCMA.

            Peace,
            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


            • #7
              Hi Darren. I, too, will pray that Caleb will not have major problems and that he remains healthy and happy. Our kids are our worlds. (I also have a Caleb, but he'll be 12 next week.) Along the lines Lisa was talking about, I hope you don't mind if I insert an email from a good friend. Her son was diagnosed with autism when he was about 2. He's now about 9 and although their journey through raising children hasn't been what they expected, they celebrate the things that Kenji can do and the way he views the world.

              I'm sending you all the wish of a very autistic Christmas. Christmas should be a day when everyone can be autistic. It should be the one day of the year you can obsess about whatever you choose...be it the lights on the tree, the gifts under them (and rearranging them everytime one slips off the stack) or all the food you've never tasted (and probably won't anyway) but fills the house with yummy smells. Christmas should be the one day of the year where if you want to sit around in your boxers all day, playing with toys and eating nothing but brownies, you can. Christmas should be the one day where you can hug people as often as you want, pat their cheeks and give big sloppy kisses. Christmas should find you happy, tired, full and fast asleep with all your new toys lined up in the bed next to you. Yes, there were a lot of people around, but no one was annoyed if you made lazer sounds or waved a string in front of them...it's a season of forgiveness and love. True, everyone wanted to touch your stuff, but they let you touch their stuff too. And maybe, just maybe, it all got to be a bit much. You were tired and cranky and a bit overwhelmed. But instead of the strange looks and quiet comments, everyone just gives you lots of understanding and plenty of space, waiting for you to find your way back to the group and being happy you've come. So I wish you all a very autistic Christmas. May the peace, love and joy of the season make it's way into everyday. Love and hugs to all!

              Annie, Matt, Charis, Kenji & Ein


              Reenie
              Reenie

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

              Comment


              • #8
                Thinking of You

                I too have a son diagnosed with HCM. His dad and uncle both have it. He turned 12 yesterday and we are scheduled to go to NEMC on April 1st. I feel so much better now that we are going to see a specialist in the field. I have called up there and they seem so wonderful. Dr. Martin Maron called me himself and I am very excited about getting him checked out by a specialist. I would recommend going ahead and doing that. My medical insurance is going to pay for the airfare and plane tickets because there is not any true HCM specialist here in Atlanta.

                It is giving me a peace of mind. I will be thinking about you and your family. I almost lost my daughter in a motor vehicle accident in September and now this with my son. God performed a true miracle in my daughter and I am certain he will take care of James.

                Best Wishes, Janet
                My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                Comment


                • #9
                  Thanks!

                  Thank-you all again! I agree that we need to accept where we land (Lisa's story).. and it generally turns out better than we would have planned ourselves. There are many many things my son can/will do if he wants (even though they won't be the active running/rock climbing/etc.. that I do). Heck.. maybe he'll be the next Einstein (if he gets his Moms brain that is). Again, thanks for the support and prayers. God Bless you all. You are a blessing to me!

                  Comment

                  Today's Birthdays

                  Collapse

                  Working...
                  X