My son started 8 months ago with a tachycardia and shortness of breath. Since then he and we have had a very difficult time. He has had numerous tapes which all show a variety of Arrythmias and has also had 2 lots of eps studies which resulted in being in theatre for 6 hours at a time and having numerous ablations.
We now feel that he is worse he is on numerous medications and is still having significant symptoms he has also developed very cold hands. We are now being referred to another hospital. This has turned our life upside down and we don't really know the outcome or future . Any advice / support would be very great full.
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Fionapi
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Hi Fionapi. Please drop us an email to info@heartrhythmcharity.org.uk or call a member of our Patient Services team on 01789 450 787 for further info and advice. It is always valuable to keep a note of symptoms or a diary of events for sharing with your GP or electrophysiologist (EP) during consultation. Never be afraid to share concerns over medication with your GP. Please do let us know how you get on. Thanks
I was diagnosed with arrhythmias when I was 16, and had my first EP study and ablation when I was 17. Some people say that my story is not very encouraging because I needed numerous medications, ablations, and also a pacemaker implant, BUT what I can tell you is: There is a light at the end of the tunnel, even for complicated cases like your son's or mine. I'm doing a lot better today, have to take no more anti-arrhythmic medications. I have, for instance, been able to do a Bachelor's and a Master's degree at university. There is lots of research and progress in the EP field.
That you are being referred to a different hospital is, in my opinion, a good thing. Good, because apparently the doctors who are treating him now have realized that they have reached their limits, and that your son is better off at a more specialized hospital. This referral is something not all doctors do; some just keep trying, thinking that they can somehow solve the problem on their own. On the other hand, I also understand that it can be scary to witness doctors reaching their limits. Where is your son being referred to? I know a very good EP specialist in London who has got a lot of experience with young patients, too. Her name is Sabine Ernst.
Cold hands and feet were something I always had when taking betablockers. Is your son taking those? As the Admin already posted, it's important that you tell your son's doctors about these adverse effects. There are lots of different medications on the market to treat arrhythmias, so maybe they can find something that he tolerates better.
Thanks for your reply, Do they know why your arrythmias started ?
My Son was perfectly well then complained of a tachycardia then 9 months down the line he has had 2 very Long EPS at Glenfield numerous ablations and his last 3 day tape still shows a collectcion of different arrythmias and also Pauses.
It is a very difficult time for him as he is in the middle of his A levels and hopes to study Philosophy at University, due to his illness and time of school he will not get the grades they require. We have a meeting with them shortly.
He is now under the care of Papworth and we have met the new consultant who said there had been virtually no improvement in all the tapes. He is on Bisoprol Flecanide and also going to start Ivabrdine.
We have found this all very hard . It is wonderful news that you are in the situation where you do not need to take any more treatment .
We're not sure why my arrhythmias started. I might have had a pericarditis that wasn't diagnosed, that's what the echo shows, but whether that played a role, we don't know. The first arrhythmia I had was something that's usually congenital, as far as I know: a permanent sinus tachycardia. But then we had never noticed when I was younger. I developed the first symptoms when I was about 13/14, and was diagnosed when I was 16. I was in 12th/13th grade at school when I had six ablations and a pacemaker implant, so I can relate to the difficulties your son has to achieve the A level results he needs to study at university. I missed quite a lot of school, too, and when I took my A levels I was on a betablocker (made me tired, I had trouble concentrating). My teachers always tried to talk me into agreeing to do the 12th grade again, because I had missed to many classes. But I wanted to graduate with all my friends. I could not stand the thought of having to go back one year, into a class where I didn't have any friends. I really hope you'll have a good talk with his teachers, and that they find a way for your son to make things a little easier. Where there is a will, there is a way - always!
My son has LQTS and is on a beta blocker. We are very fortunate in that he is responding well to the beta blocker and it has reduced the number of PVCs as well as brought his QTc almost into normal ranges. I can tell you that he has experienced coldness in his hands and feet due to the beta blocker. However, it must not be too extreme as he doesn't complain about it. He has had a few episodes of v-tach. However, he has an ICD, so anytime he starts experiencing any irregularities, his ICD will go into antitachycardia pacing (ATC) which he does not feel.
Are they concerned your son may go into v-fib or SCA? Have they discussed the option of having an ICD implanted? Many people are scared of this, but as a mother, I have to tell you, it has been a Godsend for me. Knowing that my son has the added protection, 24/7, if he goes into v-fib or experiences another SCA event is worth any concerns I have of him having an ICD.
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