children living svts and pacemaker

[scotti562]

Hi, i just wanted to put my story out there and to see if there are other children out there similar to my son.
My son first started having fast heart problems at the age of 6. they tried various different medications all which he was not compatable making him sick and still having svts. At the age of 7 they tried the ablation but half way thru they decided not to continue as they would put him into complete heart block. After lots of trips to the hosptial and monitors on they found he would go into complete heart block at night, so they inserted a dual pacemaker. He was of all meds and i think they thought the svtswould just go away. It was not long before he was having svts again so back on meds. The dose was really high considering he was only 10, he was Flecenide 300mg slow releasing daily and still getting svts and feeling like shi....
December just gone he had the ablation done, even the risk of complete heart block had to be better than the life he was living, with the pacemaker already in, it was the best opition.
All was great, he had a life doing what all his friends were doing, svts and side affects of meds no longer were the ruler of our family life.
Then out of nowhere 3 weeks ago they are back, and back with vengence. They go away when he lays down but on standing are back. He has been of school 3 weeks now and we have cardio appointment tomorrow, thank goodness. Im thinking they will want to do another ablation. I do have faith in his surgeon as he is one of worlds best peds cardio surgeons.  This has been along hard road for all of us, especially for my son. This is a condition that has been passed down by my ex husband.
I just cant wait for my boy to do all the things that 11 olds should be doing, enjoying life.

[scotti562]

Thank you for your good thoughts and support, i will check out that site. He has a abnormally natural low heart rate so i think he feels it going alot faster even though it might only be going say 120 that would be 3 times his natural heart rate which is half the problem. I hear what you are saying about the heart needing time to heal and will keep positive. Thank you and you take care too.

[MichelleP_3811]

I would say check into Dysautonomia.  I beleive there is a link on this page on the right in related forums.  The one thing I do know is younger hearts beat faster than older hearts and they are able to tolerate it all very well without any long term effects.  Obviously you will want to work towards controlling the issue whatever it may be but just try to stay focused on the fact that our hearts are very strong resilient muscles.  Definitely make sure he drinks lots of water it will help him for sure.  And I will also say before I started exercising, doing cardio, I did not tolerate my svt epiosdes well at all but once I started to get consitent daily cardio I could almost function normal with a heart rate in the 230s.  I would stop and wait for my epiosdes to pass but the point is the doctor is correct that the exercise will help him tremendously.  Though I might question the doctor as well if the pacemaker is set correctly.  I don't know much about pacemakers but I do question if the setting is possibly creating these newer issues he is having.  I will also say that my heart was very unsettled for a good 3 to 6 months after my ablation.  And to be honest I am a year and a half out and only now am really starting to see my heart be calm and at peace so it is possible you son just needs a bit more time to heal as well.  So I don't know that the doctor suspects the issue will magically dissappear but he may not want to rush into anything else until your son has had a good deal of time to heal from what he has already been through.  Like I said the heart is a very resilient muscle but it can take quite a long time for it to heal itself so just try to direct your son into a healthy lifestyle and keep tabs on if he is improving or not.  If not then go back and take a new look at his issues.  I send good thoughts your son's way that these next three months see him improve with every day.  Take care.  

[scotti562]

Thanks for your comments, really apprieciated, well we saw the cardio yesterday and he has pots.
His not ruling out that hes not getting more svts as well but they have reset his pacemaker to collect readings if he goes over 150, as it is only set for his heart block only clicking in at 40.
The dr has said to get him back to school, drink lots of water-up to 3 litres per day, have a high salt diet, exerise more and raise his top of the bed. We see him again in 3 months, maybe try Fludrocorlisane- not sure if i got the spelling write.
I know nothing about this, so if anybody can help me understand it i would really apprieciate. I understand this will not come right over night and these things will help but do i just send him off to school feeling like this??????
and it will magically disappear????

[MichelleP_3811]

I believe wpw is possibly hereditary.  My avnrt wasn't and like Tom I had it all my life until my 40s when it started to become frequent and so I got it ablated about a year and a half ago.  It sounds like your son has a pathway that gets initiated fairly easily.  The main thing I believe with younger people is the possibility for the extra muscle fiber that is allowing the fast beat to regenerate itself.  Younger hearts heal better than older hearts.  It is also possible he had a secondary pathway as well that they didn't catch in the first ablation.  It is not unheard of for people with heart rhythm problems to have multiple issues.  As well maybe due to his age they may not have been super aggressive with the burn to create the scar tissue that blocks the signal.  I know when they did mine the EP went back over the same spot and gave it a second application just to be sure.  I will hold faith that if you son goes in for a second ablation that they correct the issue for good.  Stay strong and do keep us posted on how he is doing.

[tom_h]

I'm sorry to hear of your son as it hits close to home. My first SVT episode was at 6 years old, and I had it all my life until my ablation at age 59.  It isn't fun living with it, that I can tell you.  In my case, there was no one in my immediate family who passed it onto me, and neither my children or grandchildren have it.  Fortunately,  a pacer was not required and I just lived with it.  I hope with the technology available today that you can get the help he needs.