Just been diagnosed with Long QT syndrome - (hereditary heart defect) any advice? could affect DDs

[iloveshoesandbags]

Nearly collapsed at work this week and had an ECG at the doctors.
Am due to have tests in London at the University College Hospital on Friday but pretty much have had it confirmed.
My 25 year old cousin died from this a couple of years ago.
I have the symptoms and have had for some time - dizziness, palpitations, fainting etc.
As this is hereditary then I will need to have the DDs tested, 9 and 2.
Any advice from anyone who knows anything about this condition?

I have HOCM which is very similar.I was diagnosed in 2001 and had been dizzy breathless and had palpitations too.My doctors have always said it is better to have the diagnosis as treatment can give you a normal life and life expectancy.I am on 2 drugs.One improves symptoms and without it I am hopeless.the other is fairly new and is to try and alter the actual heart structure and I don't know whetehr it has worked yet! My son has been tested once aged 13 and was clear he needs a re scan at 17.That worries me the most.

Hiya, my best friend has this. I would think a lot of people in your family would need to be tested. My friends is controlled by medication and i have to try and remember not to make loud/sudden noises around her. Theres a few good support/info websites on LQT that can be found on google, they might help?

There is a charity called cardiac risk in the young - website here (does make explicit reference to sudden cardiac death - so maybe not something to look at tonight)

Also children's heart foundation here

This must be very scary for you all but it is such a good thing that you know this now - even if it doesn't feel like it right at the moment.

thank you everyone, I will have a good look at those.
Family is getting tested and everyone so far is showing positive - so lots of anxiety around.
It's the children I'm more concerned about and them having to change the way they grow up. DD1 - 9 yrs loves rollercoasters (as do I) and they are a no-no and she's desperate for me to take her this year.

My best friends currently pregnant and was told to stay on the medication - shes been getting extra scans and all seems well so far Oh and seems to be a decreaced risk of danger during pregnancy which I thought was really interesting - read it somewhere but dont have the link right now to back it up. Supposed to be getting ready for work oops!

Sorry to hear lots in your family getting a positive diagnosis however at least now they can get the medication and regular check ups.

The main risk lies in NOT being diagnosed, so although it sucks that you have it, you're at much lower risk now you have (nearly) got a diagnosis.
The main treatment is beta blockers, which will slow down the heart rate, and help prevent any further episodes of dizziness or fainting.
The other treatment option, particularly if the beta blockers don't fully control your symptoms, is insertion of an ICD. This acts in a similar way to a pacemaker in that it monitors your heart rhythm, and if it starts going too fast, then it will deliver a shock to restore the heart to a normal rhythm. The procedure is done under local anaesthetic and sedation.
Northern Lurker has already linked to the CRY website, which has some good information. There is also the arrythmia alliance website which has a little bit of information about sudden cardiac arrest on it as well. If I can be of any more help, let me know

I don't have Long QT syndrome, but do have a heart condition that is also hereditary and causes arrhythmias. Like your dd I worry for my ds, he has yearly check-ups and as yet doesn't show any signs. But that doesn't stop me from worrying so I can really understand your anxiety.

I have an ICD and would be happy to answer any questions about it, should you have to go down that route.

Thank you everyone. Starlight I may take you up on that if I have to have one of these.

I actually had more palpitations when pregnant but maybe the risk was less.