Hi everyone
I have been combing the internet for information about WPW since my little boy's diagnosis about 8 weeks ago.
We brought him to A&E in the middle of the night with a really high temperature and rash - turned out to be a non specific virus but whilst we were there he went into SVT. His first 'attack' to our knowledge. One ice bucket and 3 shots of adenosine later he was back in sinus and put on propanolol.
We have been to Great Ormond Street and his meds were changed to flecainide as the consultant felt it was better for him. All going well until this weekend when he woke up with another temperature, another virus and yet again when we got to the hospital another SVT.
This time he came out of it with an ice bucket but later that evening he went into another one as his temperature spiked and it took hours to come out of. The drs really seemed to panic and we were out of our mind with worry. They couldn't get access to his veins (fat happy baby) and so the drugs just weren't working. In the end he came out on his own.
Myself and my husband aren't traumatised by what we went through on Sunday. I am really hoping someone can reassure me that they had WPW or have a child with it and all was well. The consultant suggested he wouldn't grow out of it and would need an ablation at 4/5 years old - anyone's child go through that?!
Does anyone know whether the flecainide will work better in increased dosage? (Personal experience) they have increased his meds as apparently had blood results to suggest levels in his body weren't therapeutic a week prior to this attack but hadn't told us 😑
I'm pretty sure that a virus / temperature is his trigger so am hoping the next time he gets ill - and he will - that the flecainide kicks in but man I'm scared.
Any reassurance gratefully received.