Coming off Flecainide (for PVC's) and possible Ablation for Teenager

[hannah2002]

Hi!

I would really appreciate if you would please read my bio for the back story to this question as it has a history, but I will give a brief overview below.

My daughter (14) is going to be weaned off Flecainide soon to see if her heart has 'fixed' itself after suddenly starting to misbehave in April 2021. She was in Bigeminy at 13 years old with a PVC after each regular beat and had some bouts of irregular rhythm. We have had a multitude of tests and medications and right now she is relatively stable; last 24 hour ECG showed less than 1% PVC's when before it was 47%. She has had an MRI and the structure of her heart is absolutely fine, and the stress test too was fine, the doctors cannot answer why it suddenly started behaving like this.

She is currently on: 100mg Flecainide 2x a day, 50mg Atenolol 1 x a day and 50 mg Midodrine (she also has POTs and low BP , possibly from the Atenolol).

So, they want to wean her off to see how her heart behaves without any meds, should it all be ok, fantastic! (I know it won't be as she has forgotten her meds on a few occasions and the PVC's come back within a few hours; she can feel them in her chest, I can feel them in her pulse and my ECG on my Fitbit even picks them up). If they are still there, the options will be to go back on the meds long term, or try ablation. My daughter is very keen on ablation, she just wants to get it over and done with and finished. The consultant wouldn't do it before because there were multiple areas of her heart that were misfiring, and they of course didn't want to ablate 4/5 areas of a teenager's heart. They said if it was just 1 main one, they would consider it.

We are both very keen to get this moving as she starts her GCSE's this year and I want to minimise school disruption (she missed an entire half term last year).

I don't know if anyone has been in a similar situation or not but I have a few questions, even if you can only answer 1, I would be so grateful:

- How easy is it to come off Flecainide - are the side effects horrendous and will she need to be admitted and monitored whilst she comes off it?

- How long will it take to wean from 100mg a day to nothing?

- Long term effects of being on Flecainide?

- Ablation procedure - awake or asleep and how traumatic is it?

- Anyone had ablation after something similar - did it fix the problem?

- Living with PVC's if ablation only clears one section...how do you manage?

Anything else you think might be helpful or if you have any questions, please do let me know. Apologies for such a long post...I am a single parent and it's quite hard to navigate all of this on your own!

[Hidden]

Hello

I was really hoping that someone would be able to answer your questions and I have to be honest neither can I

I can only imagine as a Mother how difficult this must be for you as obviously you want the best for your Daughter who seems to be handling this all very well as well as knowing her own mind knowing what she would prefer

I would take this list of questions if you can and ask the Consultant and get the answers you need to help you both for now to make the right choice

You could also phone the BHF Nurses , I will put you the contact details below as they will maybe be able to answer some of your questions for you

I hope your Daughter does well in her exams x

Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm or email [e-mail]