Wolf parkinson white syndrome - DD had another moment

[shrooms]

Hi,
A while ago, I posted a few times about my dd (60 who had fainting/fitting attacks with tachycardia, spent some time in hospital and is now on flecainide for wpw syndrome. Today DH had to collect her from school and go to the doctors as she was feeling funny again and her heart rate had shot up in play time. She was apparently sitting at a table with her head on the desk saying she was dizzy so was carried to the office and Dh was close enough to come and get her. She was okay, and heart rate had gone down a bit buy the time they were seen, but bp was very low (60/40) and was pale and tired at the docs. They said to watch her closely and take her to A & E if she got bad again.
I am worried now as she had been fine since going on the meds up till today, and I really don't want it to become bad again (although at least it wasn't as severe as before).
Has anyone had this happen after going on meds and was it the only option to have the ablation done? Or are there other things that can be done? Please give me some reassurance as I hate hate hate her to suffer. x

no info, sorry, but wanted to offer my sympathy. it must be terrible to think of her being upset by this.

Thanks for your kindness She is a very sunny little girl in herself, but it must be hard for her at that age to have a condition that leaves you suddenly unwell and with no control over the situation (we have tried deep breaths and gasping as well as massage but no help yet). She also had almost forgotten about it all and then it comes again! x

i get a racing heart sometimes (have been investigated for all sorts, it's probably related to a slight kidney and heart malform) it's a bit frightening. funnily enough deep breaths make it worse for me... closed eyes, lie down, relax shoulders and breathing very gently through my nose can 're-centre' my breathing. and i'm not a hippy...

wow she is a beauty - just sneaked a look at your profile!

so sorry you going through this, have no info either, just wanted to offer a mumsnet hug

I know when my ds started having fits it was as if the whole world stopped. Awful time.

Thinking of you and hope you have someone with info soon- some clever mnetters out there xx

Thanks! (And doesn't she know it ) Can;t resist a pose even when she is stuffing her little face lol. Thanks for the hugs and support. Mucho appreciato x

shrooms - my dd has heart problems (not WPW)and I often have to fetch her from school. I can understand your worries.

Do you have an appointment with the cardiologist soon? Are you under a children's hospital? Most of them have a Cardiac Liasion Nurse - you can call them and have a chat if you're worried about her. Maybe she needs her meds tweaking. I think they try to avoid the ablation in young patients - put it off for as long as possible anyway, because the extra electrical pathways can change as you grow older.

And I agree - she's gorgeous.

Nothing to offer to help, but best wishes and a bump for you.

Thanks, guys. Does anyone else have any advice? x

I suffered SVT (similar to WPW) attacks from the age of 15 until I had the op to solve it a couple of years ago. I was on flecainide for nearly two years. When I first took it, it was about three months before it settled down and really take effect.

I haven't seen your previous thread, but just had to say well done for getting her diagnosed so young. I spent years believing it was a normal PMT symptom to have a heart rate of 234 bpm for hours at a time.

I am happy to talk about what happened to me with this if you have any questions.

Thanks so much for your reply SJmilly, and congrats on being cured
That is good to know that it is normal for the meds to take a while to be effective (she's been on it just over a month now).
She was pretty good with far less 'butterflies' (when she gets mild spells that go away by themselves) and no major attacks since going on it. I suppose I expected a magic cure and it would vanish as soon as treated, but since she really only been severely ill with it a couple of times, I guess there wasn't really much to go by anyway. So I was just quite worried for her to get one of her more noticeable attacks again the other day. Did you ever get it so high/for long enough that you would pass out or have fits? I don't know really if that's common with it or whether she is just a bit sensitive to it and that's why she gets such major symptoms...
She is back at school and feels fine again, which is the main thing! I just don't want her to have to worry that she wil be ill at school and enjoy it less because of it. It doesn't seem to be the case now, but I feel that if it keeps on happening it could really get her down
Did you find that it affected your confidence or were you old enough to understand it better?

My episodes were very very consistant in that my heart would skip a beat, then when it 'restarted' it would be at 234 bpm (always the same speed). This would carry on for a length of time, anywhere from a couple of minutes to 12 hours and then it would skip again and be straight back to normal. There was no gradual slowing down or speeding up.

I didn't ever fit, but there was at least one occaision where I passed out. It was that incident that convinced me to report it to a doctor. Before that I would hide it from everyone and carry on as normal. (it happened even during one of my GCSE exams). I was shocked at the response of the doctors, they seemed to think it was important not to let it beat that fast for too long, and would rush me straight to a and e for an adenosine injection whenever it happened. It made me wonder how lucky I was to egt away with not reporting it for so long.

I found it was triggered by tiredness and stress. The other lifestyle factors - caffeine, alcohol, fizzy drinks etc they made me experiment with never made any difference.

I did find it affected my confidence, but again, that could be age related - I was nervous about being away from home, particulary if I knew I was tired, and about being stranded somewhere, or having an episode while driving/swimming etc. I've also always been adverse to anything that would normally raise a persons heart rate, such as fairground rides and exercise, as any adrenaline rush would make it flutter and I'd be nervously checking it.

The ablation op was definitely the right thing to do for me. I didn't like being on the flecainide - the circulation to my hands and feet reduced considerably (I don't think it's recovered yet!) and I started to have sleep disturbances. Both of which I blamed on the drug. Having said that though, when they first put me on it, I had been rushed to hospital three times in the previous three weeks, so I needed to do something! I was 25 by the time I had the op though, so old enough to know what I wanted.

That's really interesting that you would get such regular symptoms. DD is not really like that but the episodes in themselves are quite dramatic as explained. Her heart rate can be not ridiculously high (about 215-220) for a child, but high enough to make her faint as like you described, it comes on very suddenly and that was why I had no idea what was wrong when she first suddenly passed out whilst playing with DS. However the second time she had to have an adenosine injection, it started out at 240ish and then crept up more to 260 - maybe she was very stressed about it as she had had a fit at school. But again, you had a very long duration of your illness, so obviously knew your symptoms alot better. Hopefully in a few months she will settle more and have no more severe episodes, however I also don't know if I like the idea of her having to take medicine (albeit a low dose for now) for such a long time. Thanks for all the information