My daughter is almost 8 months now. She was born 8 weeks prematurely (so her adjusted aged is actually 6 months but she is 8 months from birth) and stayed in the NICU for normal issues due to prematurity. She had a major episode of SVT (super ventricular tachycardia) 330+ ( I had not been in the NICU at the time this occurred, I had to travel 40 mins to see her everyday at the hospital and this had been just after I left for the night). She has since been on propranolol. She takes 1 ML orally through a syringe of 20MG/5 ML propranolol every 8 hours. She has not had an episode of SVT since but still has WPW and every visit to cardiologist she is re checked and medication adjusted according to her weight. There are two reasons why ablation is not done at such a young age, infants and babies CAN 'grown out of it' , and because of the actual procedure of the ablation it is much safer when performed on a larger heart (like a school aged child compared to and infant) that's the info from my Doc from Rady children's hospital in San Diego. At every visit I still pray and hope it has gone away, not yet though, maybe next time.. Blessings to you and your family.
Well, it sounds like you have been through the ringer. WPW is a congenital problem with the heart's electrical wiring; there is an extra electrical track in the heart that shouldn't be there. This is not something that is going to 'go away' over time. Having said that, the track can be 'burned' or 'ablated' so that the electrical impulses can no longer travel down the pathway and cause those fast heart rates. My daughter had a surgical (open heart surgery) ablation in Houston when she was 7 years old to get rid of her WPW. (Houston was the only place in the world that was doing electrical surgeries at that time, now they do ablations in the cath lab all the time in this country). Believe it or not, your child getting older will make things a lot better for you because he will be able to tell you that his heart is beating too fast; even a three or four your old is plenty capable of telling you. You won't have to be listening to his heart beat every couple of hours. It really surprises me that he is not having any symptoms; usually he would at least be sweating at unusual times. Be careful of using all of the medical equipment on your son; it can cause him to become very anxious about his heart and can cause him to become a 'cardiac cripple' which is the worse thing for a child to have to deal with; it is hard enough for a child to have to live with heart issues when those issues force themselves onto your sick child and change his life. Once your child is old enough to talk to you, consider puttin the stethoscope awaqy for good along with the O2 monitor. I wouldn't even consider buying one unless you speak with the pediatric cardiologist first and see if he thinks it is really necessary. He'll tell you if it is truely necessary. Take care. (just on a side note: MedHelp also has a Pediatric Cardiology Forum for the support of families dealing with children who have heart issues and questions)
It sounds like you're doing all the right things! Unfortunately now that I can, I'm too busy working to sail. But perhaps in a few years when I retire, who knows. It was hoped that I'd outgrow it too, but they only became more frequent as I aged. Perhaps your son will see a different outcome. Best of luck to you and your little man.
Tom!
I guess its all about keeping a perspective on things. All things considered, things could be much worse. We are still however clinging on the hope that he will eventually outgrow the WPW.
We do keep a close eye on him and listen to his heart at least every 3rd hour. It has become a routine. We use either the good ol ear or a stethoscope. Im looking into the possibility to using an oxigenmeter. I have yet to find a decent one for infants.
And we try not to treat him any differently. At this stage, that is not a challenge although it means that we cannot stray too far away from a hospital. At least not until that we know that the meds he is taking actually have effect. At this writing moment, he has not had any relapse for 2.5 weeks.
A contributing factor may be that we make sure he gets his sleep and is fed regularly. I guess one advantage of getting WPW diagnosed when you are young is that choice of lifestyle, stress, alcohol, coffeine etc. are non-issues.
Too bad about the Carribean and Bermuda. Perhaps now is the time for those adventures? But you are right, one adapts and life becomes what it becomes, in most cases damn good.
Take care and thanks for sharing.
/C
Take your son, then add 5 years to him, and you have almost my exact story. My first episode was a 6. Of course I could talk and express my discomfort, but my mother attributed that to a fever and illness that I had at the time. It wasn't until i had become cyanotic with bluish lips and nail beds that she called the pediatrician. I was whisked away to the hospital where my heart was clocked at 312bpm. That was 55 years ago, and I have no idea what they used to convert me, but it worked. I was shown how to do Valsalva, given Digitalis and sent on my way. Over the years, I have had literally hundreds and hundreds of events, and have never needed to go to an ER as I could convert them myself.
Of course your son is still at an age where he cannot communicate his situation, nor can he be taught methods of converting it. But I wanted to present this to you to give you hope that your son can live with this for a long, long time. I lived a near normal life, and even competed in several amateur sports at the highest levels. There were times however when my condition brought an abrupt end to whatever I was doing, forcing me to withdraw from immediate participation. There were some things I wouldn't do. Our family sailed. We had a large ocean worthy sailboat, but when I took it out, I wouldn't venture far from land. While my family sailed to Bermuda and the throughout the Carribean while I refused to go. So my life was not without it disruptions. However, at an early age, it became intertwined into my life and for me, it was normal, and I never felt like the odd man out.,
I would keep a careful watch on your son. Listen to his heart daily with a stethoscope, and finger pulse monitor. Don't make him feel "special" or different, but treat him normal. If he's too young for an electrophysiology procedure, he can still learn at an early age the methods to convert it. Explore surgical possibilites to rid him of WPW permanently. At nearly 60, I finally had it done, and have been free of it for over a year and a half and now able to do anything my 61 year old body is still capable of doing ( and it's still works pretty good too).
Michelle,
Indeed it is a more severe WPW as he has had recurrent relapses despite being on Sotalol. In most cases a beta-blocker e.g. propranolol, atenolol etc. will suffice in moderate dose. But unfortunately not in this case.
Yes we are on top of things and I don't perceive us as being overly protective or cautious BUT it keeps us a bit on edge not knowing when or where he will have a relapse and we will have to rush to the ER. It kind of restricts our movement a little as we don't want to be too far away from a decent hospital at which we can expect good at care and experience with administering Adenosin. In fact, our plans were (before he was diagnosed with WPW) to move abroad to a developing country but that option is of course ruled out at this point.
Since put on Sotalol, he doesn't reach quite the same bpm as during his first couple of relapses. Instead of hitting a high 335 he now oscillates between 225 and 275.
I guess our concern (of of them) is that as he gets older, it will become increasingly difficult to detect he is having an episode if it peaks at say 175-210. Coz the thing is that when he gets an episode he doesn't show any signs at all! Not the slightest discomfort except for motor activities becoming slightly anxious.
/C
We have tried some vagal tricks but it doesn't seem to work on him at all.
I don't think he would appreciate us sticking him into an ice-cold bath but perhaps worth a try.
Ablation, at this point, is not an option. His attacks are not severe enough according to the cardio and they jury on possible drug resistance is still out. In addition he is too young. Where we live (Sweden), ablations are not carried out on children under the age of 12, provided it is not a life-threatening arrhythmia. His heart is otherwise structurally normal. And there are always increased risks of performing an ablation on a baby as their arteries are so narrow.
In general svts are not a major threat to a person's overall health and if there is some initial distress the heart has felt from unattended tachycardia the heart usually has the ablity to heal itself given a little rest. I have also read that a child's beat tends to be faster than an adult's beat. So a beat of 300 in a child may equate to a beat of 200 in an adult. That said, both beat rates as high as I have stated in children and adults need to be tended to so I am glad to hear you are on top of the issue. It does sound as though your son is having a more severe than normal amount of episodes though this may be a more normal occurrance with WPW than say other types of svts. In any event, the main reason I say this is your son should be able to live a long healthy life so long as you manage this condition. Keep doing what you are doing to convert him when he falls into tachycardia and maybe even attempt some of what the previous poster said about trying to find ways to convert it on your own and do be in touch with the cardiologist about when it would be appropriate to try an ablation. I am not sure what the protocol is for a small baby and I have read that younger people who have ablations may need further ablations in the future but if this isn't something your son will grow out of he will need an ablation at some point to cure him of the condition but I just don't know at what age they can do it. Most congenital svts are fairly easy to correct so it is now just a matter of managing your son's until you can get him in for an ablation. Take care and if you have any other questions just ask.
You might try some PHYSICAL conversions at home.
Ice bath may work. It's a Vagal Maneuver. I'd LEARN THESE.
Maybe the age is a factor, but I'm surprised they have not talked to you about ablation. That day will come.