recovery after surgery

Hi I am glad I found this group.. MY son was diagnosed at birth with ASD, Mitral valve prolasp, and now just recently wolfs Parkinson white syndrome and he just got a pacemaker last week, he is 11, and it seems hes a little depressed.. I have told him over and over that this will help him and that this is a good thing but he feels different.. any experience others experience with this? thank you.

5 Comments

I hope this helps

by scrappy12 - 2013-03-01 01:03:24

While I wasn't a child when I got my pacemaker, I was 14 when I was diagnosed with WPW. Due to the WPW I was not allowed to participate in any sports throughout high school which caused a lot of depression. It's hard to understand at that age because all you see is what you're missing out on. One thing my family did was try and show me all of the "normal" things I could do. It's going to take time for him to appreciate what the pacemaker is doing for him. I think the thing that most helped was going to a therapist and talking to them, definitely easier than trying to explain my anxiety to my parents. I hope things get better!

A lot for an 11 yr old to deal with

by ElectricFrank - 2013-03-01 01:03:41

Just give him understanding and support. The difference he feels may actually be a good kind of different. Even an improvement in heart function can feel strange at first.

Just tell him he has a micro smart phone in his chest with a cool app!

frank

Pacemaker and WPW

by golden_snitch - 2013-03-01 03:03:34

Hi!

I was wondering, could you explain why you need a pacemaker when you have WPW? And why wasn't it ablated? Or was it ablated and the ablation caused AV-node damage? Just curious because I never heard or read of WPW syndrome that required a pacemaker implant.

Thanks a lot!
Inga

coping

by Tracey_E - 2013-03-01 08:03:04

Adults often have trouble coping and deal with depression after a heart procedure, it's not surprising a child would also. He feels different because he IS different. My parents always told me God made me special, they stressed that different isn't a bad thing, that we all have differences. Sometimes I believed it, sometimes I cried because I just wanted to be like everyone else.

It's hard to be different from your friends! I didn't get my pm until I was an adult, but I was born with my condition and had a lot of limitations growing up. I think it made me stronger and better able to cope with life's curve balls in the long run, but it wasn't always fun at the time. I was never worried or afraid, kids don't think like that, but what I hated was being singled out from the other kids. Going forward, try to resist the urge to hold him back, to make him feel different. Obviously sometimes you'll have to, but treat him as normally as you can as often as you can.

A few things helped me. I never had any clue until I was an adult and a parent myself just how terrified my parents must have been. If I'd known my parents were scared or upset, I would have been upset, too. They were rocks, and I think that's a lot of what made me who I am today.

Mom and I did volunteer work. Seeing kids worse off than me helped me put things in perspective and realize I may have been the only kid in my class with a wonky heart, but I wasn't the only kid with problems and many of those kids had worse problems than me.

Does your hospital have a Little Mended Hearts? He may find other kids to talk to there. If there isn't one, a few visits to a counselor may help him. Hearing things from another adult, even if they say the same thing you are saying, is different than hearing it from mom! A professional can also give him ways to deal.

And check out www.campodayin.com, it's a camp just for kids with heart issues.

Good luck to both of you!

reply

by heart1 - 2013-03-02 11:03:18

He needed it because his heart was not beating in the right location. yes the av node was damaged during his first surgery he had as an infant and he has some scar tissue from the surgery that was actually keeping his heart beating. He is having an EP study in a few weeks to see exactly what this tissue is doing. the pacemaker was required because the beat was getting weak and the doc actually said it could stop so that's why the pacemaker was implanted, also this tissue may need to be removed because it may cause his heart to beat too fast. if the tissue does need removed he will solely rely on the pacemaker. thank you all for the advice.

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Member Quotes

My pacemaker was installed in 1998 and I have not felt better. The mental part is the toughest.