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Flecainide... DD with wpw syndrome. Sorry but it's long.

19 replies

shrooms · 31/10/2007 00:25

We have had a horrid couple of days.

DD (6) was released from the childrens ward today after going in on friday for another episode of fainting and severe tachycardia. It is all so out of the blue really. She was playing at school and said she felt butterflies so sat down for a while. School forst aider felt her pulse and noted it was going quite fast. Then she got very pale and dizzy, and fainted. We don't know if she had a seizure or not but they said she twitched for a while and was incontinent again. Ambulance was called and they blue lighted it to A and E while I was called and got down there as soon as I could.
She was given the same injection as last time to bring her heart under control as it had reached 246 bpm which is ridiculously fast. She was stable but had a night in ICU incase she needed emergency treatment again. Stayed ill and pretty out of it TBH. It was awful to see her like it. Come morning she was okay and moved to normal ward, where her scheduled tests were bought forward. She has had more ecgs, echo and general bloods ect ect. They have given us a diagnosis of wolff parkinson white syndrome, which I don't know that much about except for that it creates an extra pathway and so too many heart beats are 'recycled' leading to tachycardia.

She was started on a low dose of flecainide and observed for a few days for any side effects. She did well and so we are home.

Does anyone else have experience with this as I remember on my old thread a couple of weeks ago some of you gave me some advice?
nyone else with a child on Flecainide?

OP posts:
dd666 · 31/10/2007 00:43

sorry cant help no advice really other than bumping for you perhaps bump in the morning hugs

shrooms · 31/10/2007 08:04

Bump...

OP posts:
Miaou · 31/10/2007 08:45

Oh shrooms how worrying for you! Bumping again in case anyone has any info or advice for you.

shrooms · 31/10/2007 11:32

Sorry to keep bumping, but bump!

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bodycolder · 31/10/2007 11:52

One of ds's friends and his mum both have this.They have both had an ablation adn are fit as fiddles.She has 3 other children not affected.Her son was diagnosed very young and he had a pacemaker and medication until he was about 7 or 8 and then had the surgery.He is 13 neRLY 14 now and is as active and well as anyone else.

Miaou · 31/10/2007 12:51

That sounds positive bodycolder. Another bump for shrooms

Miaou · 31/10/2007 15:30

bump

shrooms · 31/10/2007 18:22

Thanks for the info, bodycolder, that does sound positive but scared if DD had to have an op.

Thanks for the bumps, miaou! We'll get there eventually

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VoodooLULUmama · 31/10/2007 18:38

hi shrooms

i know two people who have WPW

one had surgery, one didn;t ,both are absolutely fine and one was an accomplished athelete in her youth.

hope your DD is ok

Miaou · 31/10/2007 22:35

Another bump for shroooms - wish there was more I could do!

shrooms · 01/11/2007 14:22

Anybody? NO? Dusst. Anybody? No? Dust....

OP posts:
Dinosaur · 01/11/2007 14:24

I have taken it myself in the past but not as a child. It was not too bad, no horrible side-effects iirc.

shrooms · 01/11/2007 14:35

Was it for wpw syndrome?

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Dinosaur · 01/11/2007 14:37

No it was for something called atrial fibrillation which is where the top chambers of the heart beat very fast and erratically.

shrooms · 01/11/2007 14:37

Oh, okay. Thanks. Hope it has been sorted for you. x

OP posts:
LadyVictoriaOfCake · 01/11/2007 14:43

heartline might be able to help

shrooms · 01/11/2007 15:53

Thanks for the link, LOVC x

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superwitch · 01/11/2007 16:04

I deal with wpw patients in my job although I am no expert - it seems quite a common condition that can "cured" with ablation although some choose not to go this route and control it with medication. I know it is very worrying and scary for you but your dd will be fine. The patients I see find it more of an inconvenience more than anything else because a run of wpw can make them faint and feel unwell. I'm sure your daughters cardiologist will choose the best treatment for her and when you get chance to speak to him put your mind at rest.

shrooms · 01/11/2007 16:15

Thanks. I know you are right and she will bounce back, it was just strange for her to get the severity of it so suddenly (fainting, fitting, pale for hours, needed oz in hospital ect) having never had anything before although it had probably gone unnoticed as 'butterflies' that she would get sometimes.

She is doing fine at the moment, keeping off school till monday, when she will just have to take it easy for a bit! Is happily playing with necklace making kit right now, and the medications don't seem to be casuing any probs with her, so for now at least I think things will be fine. Hopefully that is the end of her scary episodes xxx

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