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My 5 year SVT and Flecainide
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My 5 year SVT and Flecainide

I have twins a boy and a girl .. they r 5 years old .. for the last year my duaghter used to complain of nausea and tummy ache and i wud feel her heart beating fast then she wud throw up, her heart wud be normal again and take 10 mins nap and wake up as if nothing had happened .. i took her to her pediatrics and he was treating her from constipation and acid reflux thinking there was something wrong with her digestive system .. Then 3 months ago she almost fainted in one of those episodes being scared i called 911 and when they came her heart was going 260/min then she threw up when the paramedics tried to move her and was normal again but they took her to the hospital anyway and the dr there told me these r symptoms of heart condition but she is too young so i am gonna rule it out and we went home !!!!! 2 weeks later she had the episode again but this time she passed out for almost 10 mins till the ambulance came and took her .. at the hospital she was diagnosed with WPW syndrome and SVT .. we talked with her cardiologist and we decided to go ahead with the ablation to get rid of her problem once and for all .. we had the surgery scheduled and in the mean time she was prescribed ATENELOL which got rid of her heart arrythmias but she was suffering of the side effects especially the insomnia which ruined her appetite, temper and everything. On July 14th, she went for her ablation and after 8 hours in the operating room the dr came out and said he found 2 pathways but he wasnt able to reach them as they were in a rare and difficult place to be reached at her age and size and that he was trying for 6 hours but the cathedars cudnt make it there!! and he said seeing where her pathways are, her SVT puts her in a risk of sudden cardiac arrest and death. He decided to give her Flaicanide and wait for another couple of years to try the surgery again .. she stayed in the hospital for 3 days starting the flecainide and was doing ok .. we went home and 2 hours alter she got another bad SVT and we went back again they increased her dose to 60ml twice a day .. we went home the following day and leaving the hospital she had to get up few steps she complained of fast heart beat and shortness of breath.. being frustrated with what was going on i didnt take her back to the hospital but i called them and they said increase the dose to 70mlx2 day .. now she has been home for almost a week .. she gets the "funny" heartbeats as they calls them whenever she tries to do anything .. somedays she cant make it up to her room all day !! i know she isnt being anxious or nervous cuz we take the technique they taught us to lower her heart beat as a game and she is a tough gal and as parents we try not to make a big deal out of her arrythmias though it is killing us inside .. i called her dr office and they sent me this 30 day monitor to record her episodes and i sent few and they say yes it is elevated but no worry !!! but what i feel is that i took a healthy kid who used to exercise and swim all day  to do her ablation and left the hospital with a sick kid who cant play with her brother unless she is sitting down .. now her dr is on vacation and i will wait to see what he wants to do when he come back monday cuz i know it is hard for her to live like this. Besides, when i was leaving the hospital the last time another cardiologist came to see her and he said that he has experience with cases like my daughters and he was able to reach those pathways in children even younger than hers and they we dont need to wait for another year ot two and he can arrange with our cardiologist to do the ablation again before the school starts but i didnt have a chance to talk to my dr yet about this cuz he is gone .. I am just writing this post to see if any parent experienced this with their kids SVT and to know if anyone had an experience about having 2 ablations in such a short time or if anyone had those fast heart beats as much when using flecanide .. Thanks and wish u all the best
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If you spoke with a doctor who claims he can do this, then find out who he is and get to him!  Ask how many of these types of sugeries has he performed, and his success rate.  If I had gotten a second opinion on my son, he would still be with us.  What one surgeon may not be able to do, another can, so I am so BIG on second opinions.  You don't need your doctor's permission to see another doctor, just do it.  You can have all her records released from the other doctor very easily, along with the operative report.  I feel so bad for all of you, and these doctors jerking you around just angers me! I went thru this with my son.  Please keep us posted, and act quickly.
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I can really relate to a few things you wrote. My daughter was diagnosed with Juvenile Rheumatoid Arthritis at 5 years of age. She landed in the hospital because of a toxic level of asprin. I picked her up from the hospital to take her home with a terminal form of heart disease! Took her in for arthritis came home with a dying child. One of the forms of heart disease she was diagnosed with was WPW (although this is NOT a terminal form of heart disease) and at the age of 7 she was taken to Houston's Texas Children's Hospital for an open heart surgery. They ablated the tract during that surgery and she was in the hospital for 10-12 days following the surgery. Since then she has had several more tracts develop and several more ablated in the cath lab. (In her, these developing tracts are due to the thickening heart walls: she had Hypertrophic Cardiomyopathy (HCM) which is a terminal heart condition) One of the tracts in her could not be ablated; it's called a Maheim Fiber and it is near the ventricle, we were told to take her home and spoil her for what childhood she had left. We have had SO many of these ablations done; I can not understand for the life of me why any doctor would tell you that this can cause a sudden death event in your daughter and scare the heck out of you! Our daughter had Sick Sinus Syndrome and needed a duel chamber pacemaker because her heart beat was dropping down into the 30s, had both a Left and Right Bundle Branch Blocks,( a problem where there is a break in the electrical pathways going down to the left and right parts of both sides of the ventricle so the electrical impulse can't get through)  the Maheim Fiber in the ventricle A-Fib requiring several electrical shocks and the ONLY reason she was at risk for a sudden death event was because all of her ventricular heart walls, themselves, were so thick (4cm.). You need to see someone at a good University Hospital where the doctors know what they are doing. WPW doesn't kill people; it's one of the most common electrical problems of the heart. There are a lot of different drugs that can be used to control arrhythmias in children. I would head straight to another good EP doctor. If he feels another ablation is warrented, he'll do it; he's not going to put your daughter at risk for anything unless he feels it is really necessary. Keep us posted, even if just to vent. There is also a Pediatric Cardiology Forum on here that you may be able to get more help on. I usually go onto that forum as well. Take care!    
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Thanks u all for ur concern and wish the best for all of you ... Actually the other dr who claimed he can do the surgery is my dr's partner and when he talked to me i told him i got no problem switching drs and he said we got no problem switching patients too .. but for the who last week my dr was on vacation and this other dr was saying i cant see ur daughter or decided in her case till ur dr comes back and i talk to him !!!!!! Today is monday and my dr is supposed to be back at the clinic i called hem left a msg and hopefully will hear back from them .. it is getting so frustrating tucking your 5 year old in bed at night and seeing her crying and asking you mommy y cant i do the things i used to do or why do i get the funny heart beat and feel tried and my friends dont !!! hard questions and the answers will be harder .. May God be with u all
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