More questions from pregnant wife

[rocky52]

Thank you for all your posts. My husband has an appointment at the Cleveland Clinic in Ohio at the end of July but the Dr. is not a specialist. I'm going to get an appointment with Dr Lever instead.

I'm wondering if my children do get the HCM gene will it mimic my husbands symptoms and come on later in life? Does it get worse as the generations go on? Would the Dr have detected some kind of problem with my son if he had some major issues? Should I get my baby screened at birth?

I know I need to call Lisa at some point but I am in meetings all day today and would love a couple answers by the time I get home. I really appreciate any answers you can give me. I slept a little better and your words of encouragement have really helped. I don't know how I would of managed mentally if I had to wait untill the end of July to get the answers we need. Thank goddess I found this board.

Angela

[jujemendoza2002]

Re: More questions from pregnant wife

Besides the 50/50 chance of passing it on and if your children should have hcm one day it doesn't mean that it will show it self at the same point in their lives as their father and it does not mean that it will be as mild or severe as dads.
My father had it and was diagnosed in his early to mid 20's I think , he passed around 30.
I was diagnosed when I was 12 and although I have had my share of problems, I'm still kicking!
My son was diagnosed when he was about 4 weeks old when I showed him off to my cardiologist and heard a mermer, by accident, then later I took him to childrens cardiologist , He died from sd @ 6, but, there is so many factors that makes everyone who has this a little different and when my dad and son died, even knowing it wasn't long ago with my son alot of things changed, technology and doctors know more and I know more and I didn't have know help like here w/ hcma.
my daughter is doing good, but she has a abnormal ekg, but her echo's look good right now, besides we have taken some precations. and we understand my family history.
I would have all your children screened if I were you and arm yourself with info, talk to other's and lisa.
I am not trying to scare you just telling you what it's like for My family with hcm, please feel free to pm or e-mail me when ever you like.

[Abbygirl2]

Re: More questions from pregnant wife

I am the only one in my family with HCM, so far. Nearly everyone has been tested.

We got our kids tested(ages 4 and 12) and they are both fine so far, but it is a constant worry. I worry moreso when the kids are active...my son plays hockey during the winter and it weighs on my mind especially then.

However I try to do the worrying myself, and just let the kids live normal lives. My cardiologist says there is no reason the kids should refrain from physical activities unless they show abnormalities.

HCM developes differently even among close relatives, so no one really knows how severe it will get...until it gets there.
Usually, it doesn't appear until the teen yrs, however I would still get your kids tested, as it can sometimes appear earlier(or later). It would also ease your mind some. If by the age 20ish?? they have not developed it then odds are that they never will, however the recommendation is for family members to still get checked(echocardiogram) every 5 yrs, or sooner if symptoms appear.

At first, there is so much to learn and many questions, I am sure many of us have lost sleep over this. Fortunately we have the HCMA, I have had many many questions answered by the very knowledgeable and kind people here, I believe belonging to this group is one of the best things I could have done for myself.

I don't know if you are aware, but there is a book on HCM, it is very informative, I highly recommend it. Ask Lisa about it.

Well I have rattled on enough, hope you and your family are doing well.

Take care,
Pam

[Reenie]

Re: More questions from pregnant wife

I think others have already said this, but the way HCM develops in individuals within families isn't always similar. There is a lot of variation there. It wouldn't hurt to have your kids screened right away. They can even look at the baby while in utero, but usually HCM isn't detected until adolescence (sp?) or later. Again, that's variable. Most families play the waiting game and don't restrict their children's activities until there is a reason to do so. Hope this helps.

Reenie

[jujemendoza2002]

Re: More questions from pregnant wife

Renee, I had my sons heart looked at while I was pregnant with my son Mikey with the ulta sound while utero three different times and it didn't do any good, he did have hcm dianosed 4 weeks after his birth, when my doc. heard a heart murmur and sent him to childrens. I don't remeber them doc's looking for hcm while pregnant with my daughter Angel.