My daughter is 12 and has long qt syndrome. If anyone is same situation I would love to know how life is. Sometimes my daughter really strug

struggles with not being part of lots of activities and I as a parent am always feeling unsure of what is ok and what is not. It would be so great to share others experiences with any advice/tips greatly appreciated. Thanks x

14 Replies

  • I am a Grandmother now, but if I had a child who suffers this, I would find out what sports she could do without too much of a strain on her body, my first thought would be swimming could be the best school sport for her, as this involves breathing in rhythm. You don't want to overprotect her of course, but maybe if you take note of what activity she is struggling with would give you some idea. They would be given a timetable so this could be discussed with your daughter in this manner rather than trying to rule her life so to speak. Her after school activities could may well be causing her too much stress which is not a good thing for any child. It would help if you knew what activities she enjoyed, more than concentrating on the health aspect. Its not an easy age either which is why you could be finding out answers from her. Get her to write out all the things she feels good about doing and sit down with her to go over these plus the school timetable. I am sure you would have done something like this, but keep in mind that she needs space to work this out and then she can bring things to you rather than the other way around.

  • Ultramarine

    Thank you for your reply. I appreciate your tips and would love to say they could apply. Unfortunately Em has anxiety issues. We are working on this with therapy. I am a very positive person and am so very aware of not being over protective. Em was, and can be an extremely happy child and as we have been told she cant even go on a bouncy castle, as well as have an alarm clock, join in competitive sport teams at school, exhert herself, especially swimming it has been a challenge to say the least. She so wants to be part ofeverything.

    Thanks again


  • Hi Jacklin,

    My son (21 yrs old) has LQTS. He was diagnosed a few months ago after experiencing SCA on July 1st. He is on a beta blocker and is doing great! Due to his SCA, my son has an ICD. Because of this "additional protection," the doctors may be more liberal in their consent to allow him to play sports than if he did not have an ICD. With that being said, my son pretty much does everything he did before he was diagnosed. He runs cross country, plays soccer, is a lifeguard at Schlitterbahn Waterpark, works out, goes paint balling, swims, dances... Does it all. HOWEVER, there were some changes he had to make. He can't do ANY of these things alone anymore. Not a big deal because he is pretty sociable. He recognizes certain signs now that he didn't realize weren't normal before, ie palpitations, shortness of breath, dizziness, etc. Also, he had to give up alcohol (not exactly what a 21 yr old college student wants to hear). He can have one a day and sometimes when we go to dinner he will have one, but he has resigned himself to be the official designated driver. He has to limit his caffeine - no more energy drinks (one of the basic food groups for college kids). He limits himself to one caffeine soda a day. He MUST drink lots of Gatorade, especially if he is being active. Not powerade, as it has little to no potassium (depending on which kind) and potassium is essential to regulating heart rhythm.

    The only other major change in his life is medication. He now must be cognizant of any medication he takes - both prescribed and over the counter. He has a list he keeps in his wallet of all recommended medications prohibited for people with LQTS. He also has an Medical ID bracelet stating his condition so all medical personnel are aware of his condition.

    His cardiologist, electrophysiologist and his geneticist have all been great supporters in my son continuing to live life to the fullest and remain active. He just has to be more aware of his body and what it is telling him than the average college kid.

    I hope this has helped some.


  • Hi Cassandra

    Thank you so much for taking the time to reply. It is great to hear your son's condition is not hindering his life. I too hope, and do my best to see the positive in life (myself recently having a kidney transplant). My daughter has had anxiety issues for which we have attended therapy which seems to be helping. I suppose at 12 she too has the growing up scenarios of peer expected activities. I just wanted to hear others' experiences and yours is good to hear, although I am struggling with my daughters limitations. We used to go swimming, with me there always but now we have been told she cant go. Consultant says there is a link between LQTS and unexpected attacks!! Also no alarm clock, no bouncy castles etc, no team sport at school, no bleep test at school, no long runs - all she desires to do. Unfortunately Em was always a super active child and we want to find a balance of 'being ordinary', ' having fun' within the restrictions. A good point I will look at is the potassium levels.

    Thank you - wishing your son a great future


  • Jacklin: Please come visit us at the SADS Foundation. We have great resources for Long QT Syndrome as well as other SADS conditions.

    We have resources to help every step of the way from genetic testing to insurance to care plans for your school. We can also help with questions or just general family support. 800-STOP-SADS

  • Thank you very much - where are you please

  • Hi Jacklin: I meant visit our website more than anything else, but we are headquartered in Salt Lake City, UT if you would like to visit in person. We also have a number of events throughout the USA during the year.

  • wow, think I may be challenged . . . as we live in England!! Though I will visit website. Thank you x

  • Jacklin: SADS also has a UK chapter! (I believe they are hq'ed in London)

    Tel. 01277 811215 E-Mail

  • Hi jacklin, please do give us a call on 01789 450787, we can provide information about Long QT syndrome and also draw upon our experience of speaking with other carers about how best to manage life with the condition. Thank you.

  • Thank you, I will do soon

  • Hey Jacklin,

    Both my mother and I have been diagnosed with Long QT syndrome, I was 24 when I first found out, pushed myself a little foo far in a 5k charity race and woke up in hospital!

    My condition isn't as prevalant as your daughters, it must be very difficult from her to go from being active to so restricted. I was given an implantable defibrillator in hospital 2 weeks after the race and although I spent 5 years thinking it was an over precaution it has kicked in twice in the last 18 month's. My heart reacts when I push myself too far physically, the first time was in a circuits class and the second time was in a swimming pool, definitely not fun. If your daughter was allowed to swim at some point I'd recommend avoiding front crawl as it puts more strain on the heart. I'm not sure if it's a similar situation, but I've found that trying to maintain a reasonable level of fitness helps, even if it's just a gentle walk. Both times my defibrillator kicked in I'd been quite unfit, recovering from a sprained ankle the first time and getting over the flu the second. It's incredibly frustrating not being able to do everything but I've tried to focus on activities I enjoy that are not so stressful. Just got back to exercising properly a month ago, few gentle jogs round the park, very little speed though even fast walkers overtake me on occasion.

    Long Qt is a scary condition to have but with the right management it can be helped. There are still things I can't do, was looking forward to a trip to Alton Towers in the weeks before which had to be cancelled, no more contact sports either but my coordination was always shocking anyway. I try to focus on the good stuff, the fact that I'm still here.

    May sound silly but I count myself lucky that I collapsed when I did. I was 2 mins from the local A&E having trained for that race entirely on my own in the months before, running in a local forest with my dog.

    Had anything happened then not sure where I'd be now.

    All the best,

    B X

  • Thank you 'B' for your reply. You sound very positive and very kind to share your experience. I think I need to explore more instead of just relying on what we have been told. Life is for living, right! Good luck to you and your Mum x

  • Hi I was diagnosed with long qt syndrome at 8 weeks old, now 28yr old. I have realised in the last 5years that going through school and teens I allowed the lqt to restrict the things I did, and use it as an excuse partly due to fear. I have been told by my cardiologist that exercise is very acceptable, just to avoid short fast bursts of exercise for example rather than 100m sprints to go for a five mile jog (sounds totally ridiculous I know!!). Your daughter needs to know exercise is fine, she just needs to get to know her bodies limits. My mum maybe wrapped me up in cotton wool a little, but my younger brother, who was diagnosed with lqt at birth, (he's 16 in august) is a lot more active than I was at his age, he doesn't allow his lqt to restrict him. I hope you and your daughter find this advice helpful. I also found my cardiologist (Dr Todd at Broadgreen Hospital, Liverpool) to be very informative and helpful.

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