SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Kerri,
This is our second opinion. But I still feel that frustration of the unknown. I am finding myself not repremanding her anymore for fear that I will excite her and make her angry. I don't want to become a nut over this. It seems that every aspect of our lives are changing. Thank you so much for listening. It's good to have a common bond with someone who knows how it feels.

Hi. My son was diagnosed with LQT also by chance as he was getting ready to start college and run cross country for his school. He was immediately told to stop all activity and was put on a beta blocker. After 7 months of research we finally met with Dr. Ackermann at the Mayo Clinic as a second opinion since my son was ready to have an ICD inserted. It was the best decision for us. The man is a world renowned specialist in LQT where here in St. Louis I was not able to find anyone with much more than text book knowledge on this disease. After two days of tests Dr. Ackermann determined that Andrew did not have LQT.
It is a long story and explanation as to how he was misdiagnosed but I will tell you that just because there is a long interval on an EKG there are other factors that need to be taken into consideration before a diagnosis of LQT should be given.
Our insurance also covered testing at Mayo so that was a big plus!

My son with LQT-3 is not allowed to play any organized sports but can still knock around with his friends. I feel his electrophysiologist would think sports are OK for LQT-3 but is not willing to "sign off" on them.

I think we all have a fear of the unknown and I also have been told my son is not in any immediate danger. I am still not comfortable with that statement. Who knows when future danger will kick in?

As for the Kerri with the Phillips defibrillator, did your insurance cover it, and what type of distributer did you get it from. The durable medical equiptment companies affiliated with my Blue Cross (RI) will not distribute one for home usage and will train as they do with an asthma negulizer. I think they are afraid of potential liabliity.

Incidentally, my husband and I were already CPR Heart Saver certified prior to his DX. My husband is a Fire Fighter/EMT-Cardiac, and I have maintain certification for my Dental Hygiene liscence.

Heather

Hello,

You mentioned that your son was put on a beta blocker, now that is has been undiagnosed with long qt, was he able to be taken off of the beta blocker and were there any side effects. We have seen 2 doctors and now scheduling a third (opinion). The first doctor after reviewing everything, seems to think he is on the high end of the charts with a qt rate of 480 (while exercising) and the second is still reveiwing, his records but said it looks supisious and said the course of treatment would be a beta blocker. How did they find out that he does not have long qt? I am just trying to fiqure this all out. I wish there was just a definate anwser instead of everything being so up in the air. Thanks.

I have an EXTREMELY active (almost hyper) 5 year old that has been diagnosed with LQT 1. He had an major fainting episode 1 year ago. He is currently on a beta blocker and we own a portable AED. I am struggling with decisions on whether or not to involve him in sports related activities and to what extent. I am not getting a good handle on what he can and can't do from his doctors, and they are wonderful doctors. They don't appear to be free to "sign off" on anything. I am currently getting questioned from his school and gym teachers as to what his activity level should be. Because he is so active I would love to have him fully participate in gym and even sign him up for a sports class after school to burn off some energy but I really don't know what he should do to keep him safe. I don't have him involved in anything currently because I am so nervous about him having an incident. I also don't know what to tell the gym teachers and school teachers what he can do in gym and recess. Any advice? What do you all tell your childrens schools etc.?

My daughter was 7 when she was diagnosed with LQT after several fainting episodes thru an EKG. She had been taking beta blockers for 3 yrs and we felt she was in the clear to play minimal sports. In the latter part of last year at the YMCA she went into cardiac arrest. Thankful that they were quick to act and a defibrulator in place she made it. I would encourage the daily taking of beta blockers and not taking a diagnosis lightly, as it so very unpredictable.