Hi everyone
My beautiful little boy Elijah was diagnosed with Wolff Parkinson a white Syndrome after being admitted to A&E with a high temperature about 6-7 weeks ago. Whilst in the A&E dept he went into a very fast heart rate of over 200bpm called SVT.
We have been to see a cardiologist at Great Ormond Street and they really normalised it for us, gave him some new meds and made us feel ok about it -
Likely he won't grow out of it and will need an ablation at 3/4 depending on his weight.
This was all fine until Sunday - another virus, another temperature and another SVT. It escalated at our local hospital when they couldn't get access to his veins and the drs really seemed to panic. I genuinely thought I might lose him.
I need to hear positive stories. Parents of young children who've had their SVTs controlled through meds - E is on flecainide which they have upped since the last attack - anyone whose baby had an ablation.
How did you cope with this? Did your LO have a trigger? /so far for us the two incidents we know of both started with a virus and a temperature but I'm literally a ball of anxiety that he could just pop into SVT any old time and we won't be able to stop it.
It's really raw and really fresh so I'm sure I'm it making much sense but if you can tell me anything reassuring please please do. I need to hear it badly.
Xx