tammi

hi everyone just joined all new to me. my son has congenital complete heart block with a pacemaker he has had it from the age of 2 years now he 5 next month, still alot of questions i have if anyone can answer. he does get tired through out the day and needs a rest he will sit for so long then get back up and carry on, i have mentioned it to consultant but he doesnt understand why he gets tired x

3 Comments

fatigue

by Tracey_E - 2012-11-16 01:11:32

Theoretically, he has a very simple problem with a very simple fix and he should be just like any other kid with energy now that he's paced. In reality, there's sometimes more to it than that. A couple of things I can think of

- has he had blood work lately to make sure his minerals, etc are normal? Is he getting enough sleep at night? Some 5 yr olds still need the occasional nap. It's easy to blame everything on the heart/pacemaker and overlook something else.

- have they done an echo and holter monitor to see if anything else is irregular? Sometimes we have more than one thing going on but the block eclipses the other problems. I have a minor atrial problem that we didn't know about until after I was paced for a while, before the pm my atrial rate was unrelated to my pulse so no one noticed it didn't always beat properly. It was easy to fix with programming once we figured out what was going on.

- does he get dehydrated? Those of us with heart problems can feel it faster than others. I know I can give my kids plenty to drink only to find the full cup later

- pacemaker settings. Ask about his upper limit. If he is playing and his atrial rate gets higher than the pm is set to pace the ventricles, it will make him tired.


p.s. I have CCHB also. I'm 46, mom of 2 teens, healthy and active. There are quite a few adults and teens here with CCHB

TraceyE

by tammie - 2012-11-16 06:11:30

thank you again, i have just signed up to this club and i find it very helpful, the only other person i could talk to was the consultant, The docs done a scan for his lungs and a mini fitness test on him but everything was fine, and the settings for pacemaker have been the same for a while when he first got the pp december 2009 they changed settings often, his bloods havent been done proberly since his pp failed in augest 2010, thank you again, p.s can i ask what is CCHB.

cchb

by Tracey_E - 2012-11-16 08:11:23

cchb = congenital complete heart block, less typing :o)

You know you're wired when...

Your kids call you Cyborg.

Member Quotes

It's much better to live with a pacemaker than to risk your life without one.