Hi my 14 year old son has just been d... - Atrial Fibrillati...
Hi my 14 year old son has just been diagnosed with AF and has an appt in 9 weeks.is there any one else in this situation on the forum thanks
Hi Hele74
It must be a very worrying time for you, most of us are a great deal older than that, although I am sure he is not alone, and that there are others out there who have the same condition.
Can I share with you one comment that Doctor puts on his website about AF and he is a specialist in the subject.
"AF isn’t immediately life-threatening, though it feels like it"
You can read all of his advice here, and one of the reasons I like him is he is/was a sufferer, so he really does knows how it feels.
drjohnm.org/2011/03/the-bes...
On that same page he states The best tool for treating AF is INFORMATION, and as you have probably discovered, information is the thing that can be the hardest to get.
So if I may recommend some next steps before you see the specialist
Read, Read, Read:- especially the AFA website (link from the home page) which has some tremendous articles and facts sheets, Make a list of all the questions you need to ask, you will forget them otherwise and then regret missing one.
Share:- on this forum and on others we are here to support, cajole, uplift and generally just be a resource for you, use us, abuse us (nicely please) if necessary, but keep asking questions.
Lastly you did not say how your son was feeling, I can sort of imagine how you feel, but how is he? I think most 14yr old boys think they are invincible, and this must be a blow.
Anyway hope this helps, and know that we are all here for you
Ian
Thank you so much for your reply Ian, I will follow your advice and read as much as you can, so far I'm struggling to find information on children with AF but I will read everything. My main concern is the severity of his condition, does he suffer frequently or is it occasional? It's been going on for about 5 months now and was accidentally picked up by a doctor checking for Nathan's asthma, then after a 24 hour monitor they advised me AF had been detected. Nathan is a little worried but not to bad , like you say at that age they think they are invincible. Thank you so much for your help and sorry for rambling on. Helena
Helena, Welcome to the forum and I do understand that you must be very worried right now. everything Ian says I agree with particularly "information is power". There is a young lady who occasionally come on here (SJ) who was like your son found to have AF at a very young age. She is now a mother and wife and living (fairly )normally so I hope she come on soon and reads this as she could re-assure you more than Ian or I can.
It is also worth mentioning that there is often a genetic link with AF (the body needs to be predisposed to it for AF to happen) so you might like to look back through family links to see if any others have had it. Since many people have permanent AF and are unaware of it you could find a grand parent maybe has had it.
As Ian mentioned get as many questions ready as possible so that you are not going in blind as it were and if possible take somebody else with you as often under stress we miss lots of important information. Good luck and we are always here if you need to shout ,scream or just politely ask a question.
Bob
Thanks Bob for your reply, I am going to make sure I'm armed with questions. I keep reading as much on AF as possible. My son still doesn't worry it seems to go over his head a little. It's me that does it for him. You mention an AF link in the family, my dad has it, he seems quite stable with it now but I remember the times when he had an unsuccessful ablation. He went in to intensive care. Thank you so much for responded , now I have to count the eight weeks down until his appointment. Thank you Helena .
Hi Helena,
I'm 21 and have been known to have AF for about two years now. I'm not as young as your son but hopefully hearing about someone else's experience with it might be of some reassurance.
My blood pressure was regularly quite low when I was at school and in a few instances I had episodes of faints and feeling dizzy. This persisted throughout my first year of university, and was especially worse throughout the many weeks of heavy drinking and partying. Although we now know the cause was paroxysmal AF, I was being investigated for epilepsy and other neurological causes for quite some time before a cardiologist decided to implant a monitoring device and found many runs of AF going on which were causing the symptoms. I'm now in the process of getting my driving license back knowing that it isn't epilepsy and that AF is perfectly controllable.
I'm sure its quite scary; I'd say it's probably scarier for you than it is for your son - my mother is in a constant panic about whats going on with my heart, even during episodes where I might be feeling absolutely fine albeit slightly tired and breathless. I won't lie, there have been times when it's been scary and at this age, the last thing anyone wants is to be held back by a health problem. I had a very fast AF run the day before an exam last month so treating that was quite difficult because I wanted to be able to sit the exam the next morning, but I hope that you'll feel a lot more reassured about it knowing that it's a very common problem and can be absolutely symptom-free for many people. I am currently on diltiazem (60mg tds) to control my heart rate and have been given flecainide (200mg) to take in the event of being in AF for longer than two hours. When this doesn't work they electrically cardiovert (this is done after they put me to sleep so don't worry - I never remember anything of it!)
They may decide to give your son some medication to slow down his heart rate. The usual choice is a beta-blocker (which also has rhythm controlling properties) but because of his asthma they may choose to give him a calcium channel blocker like the one I'm on. I've not experienced any side effects with it at all. The doctors are usually quite good about not giving young people too many drugs to take and will be as non-invasive as possible because of his age and depending on his AF's persistence.
I am just starting my third year in training to be a doctor, I play the violin and bake lots. I am just as athletic as I was at school and am not held back in the slightest. The only slight frustration at this age is avoiding the staple constituents of student life - excessive alcohol, caffiene, exam stress (and for some; recreational drugs), but I still have enjoyed my time at university and as long as everything is in moderation things are absolutely fine.
Do let me know how your son gets on, and by all means be in touch if you want any more information and I'll do my best to help!
Andrew
Thank you Andrew for your reply, Nathan doesn't seem to worry much either that has been left to me, which is a good thing I suppose. I have no idea why he has this if he's had it for years or is it something relatively new. We don't know if he's permanently in AF or occasionally, so I am very much looking forward to his appointment. He says his heart beats very fast when exercising and when resting he feels the quivering heart. Thanks so much for replying
Helena
I suffered from AF from about 17 years old. I was symptom free other than breathlessness which was constantly put down to asthma. I had started to develop fatigue symptoms, unexplained sweating and sudden onset of tachycardia by my early 20s. It took a couple of years to get to see someone who was a leading specialist in AF before I understood what was going on. St. Marys Hospital London had a good reputation for dealing with complicated AF patients. Things are a bit better now across the country. A consultant at the local hospital had a son who was diagnosed with AF at 14 and she recommended seeing a specialist in London. That really did help a lot.
The other thing which of often doesn't get discussed much with AF is the potential for mitochondrial inheritance or mitochondrial disease particularly in younger patients with lone AF.
