Wolf Parkinson White Syndrome

I have 3 year old girl twins and both have been diagnosed with WPW since months after birth.  Gracey is currently on medication to control it which is working.  Hailey is not on medication.  We just went for their follow up appointment (only go once a year) and the EKG was pretty much the same for both girls as last year.  So Gracy will continue with med and Hailey still doesn't need any meds.  We have discussed Catheter Ablation however the Dr. suggests waiting until they are older.  Why does the age make a difference?  And I'm not clear about Hailey...since she seems to be doing fine without the meds is Catheter Ablation also necessary? What are the chances that  Hailey's situation worsens one day and has an attack?  Another question I have is if one of them does complain of chest pains, I would of course head straight to the emergency room but concerned if I get their in time.  Is time crutial?  

[grendslori]

You have asked so many questions. I will try and answer some of them for you. If Gracey is on medication, you did not give the reason for putting her on the medicine so it's kind of hard to know about what to give as a reply. W-P-W by itself is really not dangerous unless there is a serious underlying heart disease and you would already know about that due, if it exsisted, to the EKGs. Ablation is probably best done after your one daughter is older if she is symptomatic with fast heart rates. You must understand that an ablation cannot be done if the electrical tract is not 'active' on the day of the ablation. The doctor will do everything in his power to fire up an arrhythmia deliberately so that he can find the tract that the arrhythmia is shooting over to. he can then ablate it. You must also realize that ablations sometimes need to be repeated. This would be an awful lot to put your 3 year old through. This is why your doctor is probably asking for you to wait to do the ablation. It is always better to wait until children are older before doing anything with the heart as children, whebn they go downhill, go down fast. No doctor is going to put your child in jeapordy for W-P-W. If Hailey is doing fine, especially without medication, there wouldn't be a reason to do an ablation on her. You would only do an ablation when there are arrhythmia problems and or if there were serious heart disease present where an arrhythmia was life threatening. W-P-W is where there is an extra electrical tract located usually between the atrium and the ventricles. That's already there so your daughter's situation is not going to 'get worse'. She may start to have fast heart rates but because the heart rate is in the atrium, she isn't going to die from this. Children do not understand what true chest pain is, not like an adult. Your child is more than likely referring to the thumping, or palpitations that she feels and says it hurts. There are only a couple of things that cause true heart related chest pain in children and those would have easily been found in your daughter. One is something called Hypertrophic Cardiomyopathy where the walls of the heart grow so thick, the heart is stripped of it's blood supply. This disease often times will cause sudden death oin a child. The main reason people have chest pain is due to the same issue: lack of blood flow to the heart walls. In adults, it is Coronary heart Disease, or clogged arteries. Your children are far to young to have that kind of problem. I really don't think you have to worry too much about time to get to an ER. Hope this helps.

Silvia      

[bsaddler]

Thank you so much for your comments.  They were very helpful.

[grendslori]

Not a problem. Let me know if you want to chat more.

Silvia

[bsaddler]

One other question maybe you can shed some light on....The medication Gracey is on is propynol which controls her fast heart rate and is required to take twice a day.  Is it possible as she gets older that her symptoms will improve and no no longer need the meds to control it or is it inevitable that she will have to continue meds until such time she may have the ablation?   And how is that monitored?

[grendslori]

I wish I could answer the question about the meds. W-P-W affects everyone differently. Some people never have an problems with arrhythmias, some people all the time. People who are symptomatic generally would be considered faster for the ablation especially if they have an underlying heart disease. You asked how this is monitored; most times you would have a 24, 48 or 72 hour monitor called the Holter Monitor put on and you would record symptoms to be later compared to the strips of EKG. Because your daughter is so young, they might consider an Event Monitor which records the event only. Electrodes aren't the easiest thing to convince a child to wear especially because with the Holter there are so many leads. Sometimes it helps to tell the child that the wires are taking 'pictures of her heart' saying something like that tends to lessen their fears about being electrocuted.

[PikaPika88]

Hi, my wpw was diagnosed when I was 15.  I'm now 51.  I'm still having the wpw.  I saw some people posted on the other board said, their children wpw have gone away after few years.  Now they don't need to take med or ablation.  I think there is another reason why the doc doesn't want to do an ablation on baby because some can resolve by themselves when they grow older.  

[rjthkids]

My daughter has W.P.W.   W.P.W. can actually be a fatal disorder in up to 10% of cases of those with W.P.W. Basically, if the abnormal pathway is strong enough, when a child or adult goes into a-fib, the abnormal pathway will keep the A.V. node from firing at all and sudden death occurs. My daughter's cardiologist has known several teenagers that have in fact died from W.P.W., so I would not say that W.P.W. is a totally benign issue. It's considered dangerous enough that any symptomatic episodes of W.P.W. (fainting and concerning pathways on EKG) make for an automatic Class I indication for an ablation no matter how young.

That said, it is rare for W.P.W. to cause those kind of potentially deadly rhythms in children under the age of 10 and extremely, extremely rare under the age of 5. My daughter had her W.P.W. ablated at the age of two years and three months because she was experiencing frequent fainting episodes and her W.P.W. was considered a pathway that could potentially be deadly. We treated it then rather than risk it. Had she not been dealing with all the fainting issues, the plan was to leave it alone until she was 5 or 6 and go for the ablation then.

HTH

[PikaPika88]

Do you know what is the long term effect to ablation?