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8 month old with WPW can anyone reassure me?

Posted , 2 users are following.

Elismummy
Elismummy

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.

0 likes, 3 replies

3 Replies

  • Elismummy
    Elismummy

    Posted

    Meant to say we ARE traumatised by what we went through. Completely and utterly terrified!
  • akey13
    akey13 Elismummy

    Posted

    Hi Elismummy

    I was worn with wpw but it only got diagnosed when I was about 1 like your little man I got most of my episodes when I got sick but as I got older I knew the symptoms and was able to tell my parents when one was about to happen the gave me the same things that your little man is taking and they seemed to help with the attack.

    I lived with it till I was about 9 then I got an ablation done and it all seem to disappear I am now 34 and only know I can feel as tho it's wanting to come back for a second time not sure if it was because of the last two pregnancy I've had that put extra pressure on my body but yeah it starting to feel like old times. But to put your mind at easy your little boy will be ok as scary as I am sure it would be he will be ok.

    I hope my story has helped you in some sort of way I hope it all goes well.

    • Elismummy
      Elismummy akey13

      Posted

      Oh my goodness that does really help and reassure me! Thank you so much. Glad to hear you're doing well. I know the muscle / bridge can grow back after an ablation -

      I hope that isn't what's happened with you and if so that it's easily treated.

      Thanks again

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