Dear Adelaida,
This is a difficult situation that your son has, especially since his supraventricular tachycardia (SVT) has been hard to control with medications. In the end, no medication is completely without side effects. Propafenone can certainly cause nausea, vomiting, and unusual taste, so it wouldn’t necessarily surprise me if he is experiencing a decreased appetite. Propranolol can decrease appetite, as well. However, the question that’s most important here is whether his appetite is so low that he is losing weight. Certainly, we see plenty of kids with decreased appetite after about 1 to 2 years of age, since they aren’t growing as fast. However, if he’s losing weight, then this is more than just the picky pre-schooler.
That said, the effects of the medications have to be balanced with the risks of the electrophysiology study with radiofrequency ablation (EPS/RFA). This is the procedure in which several special catheters with electrodes are placed inside the heart and the heart is electrically mapped. Then, when the extra abnormal electrical pathway associated with the SVT is found, an ablation catheter is placed on this pathway and a small burn is placed to disrupt the pathway. The problem is that these burns are not tiny. Even though the EPS catheters have been made significantly smaller, and urgent EPS/RFA can be done at age 5 years, it is not without greater risk as opposed to if he was 10 years old, or older. His heart is relatively smaller, so there’s less room for error. It sounds like your electrophysiologist wants to wait till he’s a bit bigger before considering the intervention to try to reduce that risk. I would recommend discussing this further with your electrophysiologist to make sure that they are aware of your concerns, but that you are aware of the various risks involved and when the timing will be.