I've just been diagnosed with Atrial Fibrillation & underlying ion channelopathy...I'm 17... What treatment options are likely?

[sillybillychloe]

They can't put me on beta blockers because of a circulation condition I have. Not sure if there's alternative medication that won't affect my circulation.

[Beancounter Volunteer]

Hi Chloe and welcome

Well if you had come to us with AF at aged 17 then that's pretty rare and maybe there will be some members here who were diagnosed perhaps in their late 20s or more likely 30s but for you to have AF alongside what I must admit not even knowing about with this channelopathy, then I doubt if there is anyone here would will be able to advise you completely.

I had to google channelopathy and look it up, and I am sure you know more than me, but it's often a genetic challenge with the proteins which cause the electrical channels often in the heart not to work properly.

I have to be honest and say I have no idea how they will treat this, it would seem that even getting a diagnosis is pretty good and it counds like you are under medical care which understand these things and they are probably your best source of information.

From what I understand the channelopathy is the important treatment here, the AF is probably a symptom of that and it's the underlying condition which will need addressing.

Look I'm waffling and don't really know, but please stay and tell us all what happens, and good luck

Ian

[sillybillychloe in reply to Beancounter]

thankyou for the reply. Yes it is rare, to begin with they said I had Atrial Flutter, after various tests such as ECG's, echocardiograms, cardiac mri scans, exercise tolerance tests and ajmaline test... they finally got a diagnosis. Im under Great Ormond Street Hospital at the moment. they said they could easily treat it with beta blockers but unfortunately cannot because of a circulation condition I have. apparently in the tests i had done it showed a lot of ectopics too.

Just hope they can treat it.

or find alternative medication that wont have an affect on my circulation.

and thankyou so much

[dedeottie]

It will be lovely to have you on this site. Everyone is so helpful and even if they can't be practically supportive you will always have people to chat to who at least understand some of your problems. Do keep us informed of your progress. X

[sillybillychloe in reply to dedeottie]

Thankyou, means a lot x

[BobD Volunteer]

Sorry I am with Ian on this one but welcome anyway and we will do what we can to support you. A problem shared etc.

BobD

[sillybillychloe in reply to BobD]

Thankyou so much

[Loquitir]

I wonder if you have been referred to a specialist clinic which specialises with arrhythmias in the young such as the cardiology departments at Imperial College

imperial.nhs.uk/services/ca...

Kind regards

[Loquitir]

I have had AF symptoms since the age of about 15. I was eventually diagnosed in my early 20s. At that time there was little treatment. That has now changed considerably.

The National Neurology Hospital at London have a specialist genetics clinic and St Mary's London have an inherited cardiac specialist service

imperial.nhs.uk/inherited-c...

mitochondrialncg.nhs.uk/con...

You might benefit from you or your doctor contacting these services to get in touch with other teenagers in a similar position. I know a 14 year old who was diagnosed with Wolfe-Parkinson's who got a referral to the clinics and he has got a brilliant response.

Best wishes.

[sillybillychloe in reply to Loquitir]

I go to Great Ormonf Street Children's hospital. there's a specialist cardiac unit for children there.