SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Hi! My name is Tracy and I am a mom of twin boys who have both been diagnosed with LQT. M has been diagnosed with 'borderline LQT' and N has been diagnosed as LQT and Bradycardia. Neither boy has ever had any incidences from the LQT, so we are wondering if we should have an AED on hand as a precaution or if we don't really need one. The boys go to a small private Christian school that does not at this time have an AED, but they are right next door to a police station and a fire station (I know...the school really should have one on hand even though all the teachers are CPR certified). Our cardiologist thought it would be a better-safe-than-sorry kind of thing if we could afford one and I think I am of the same thought. I want to be prepared just in case anything ever happens and hope that nothing will.

Both boys are taking Nadolol. M had a 'normal' EKG at their last appointment 3 weeks ago. N still is LQT on his EKG, but he seems to be doing well. He had suffered every side effect from the medication, so his dosage had to be lowered.

Any thoughts? Thank you so much for such a great site! This is all still new to us and we're learning every day.

Sounds like you (and your physician) are on the right track to me. It is definitely best to be prepared. And it sounds like you're getting all the right advice as far as treatment, etc.

Have you and your husband been tested, too? If not, then that's the next step so that you can expand your family pedigree and test everyone who might be at risk. If you need any help with expanding your pedigree, we would be glad to help you at SADS.

As a parent with two children with LQt it was very important to have an AED. I struggled with the Insurance company which at the time was not willing to assist with the cost. It did take some time and some persistance to get them to pay for a portion of the cost. I can tell you in my experience only that it was a necessary daily part of our lives. I can say not from our personal home device (which we have) it was a very important part of our daughter being alive today. This saved our daughter's life! without it she would not be here today. She was on a beta blocker and was particpating in what we felt as parents was a safe and reasonable activity, when she went into cardiac arrest. Thanks to the YMCAS trained staff and defibrulator on site they saved her life, prior to any paramedics being on site... without this she would not be here today, so I would highly recommend having one at all times. It was very instrumental in our lives.

Alice
if you need to just talk with anyone please feel free to contact me. This e-mail address is being protected from spam bots, you need JavaScript enabled to view it - I have posted my own experience with home devices as well as within the community

Hi Tracy,

My 12 year old daughter has LQT and her QT interval is in the upper 500's. She had to quit playing competetive sports. She passed out in her Science class yesterday and thankfully she came to very quickley. Previous to this, I went in to the school and presented the nurse and office staff with all the information I could regarding Long QT and what they needed to do in case Taylor should have an incident. You can print the forms out from the Sads website. The staff had a meeting with the teacher's so that everyone is aware and on the same team. The school has an AED and are talking about making sure ALL the staff are trained to use it. The school should also know that there are kids who have it and don't know about it. Sometimes people find out when it's too late. I don't want that to be my daughter or anyone else's child for that matter.

The positive aspect of having an AED at the school is that my daughter can participate in PE which is important for her phisical and emotional growth. Without the school AED she would not be able to do so.

We are also in the process of purchasing an AED for home and travel. I just don't want to be unprepared and as you know timing can be vital. We do hike and spend alot of time in the outdoors. I feel it's best to be as prepared as we can. I hope this helps and best of luck.

Andrea