SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Yes, I would be very interested in the lab list.
Our situation is that my daughter died from brain injury related to a long QT incident. Her test was for HERG /Long QT 2. All of her siblings have tested positive as well as myself.

My siblings have started to test ( I have 5) and 3 have come back negative. However, my sister has an abnormal ECG as well as her 2 sons with QT's of 440-468. When she was on the Nadolol she felt better, she has had heart palpitations most of her life and 1 incident of what was termed a panic attack when she was a teenager. Then when her test was negative for HERG she went off-but she feels something isn't right. We have been told that the family test is 99% accurate.

My father is deceased (long time cardiac patient), and my mother's ECG has a QTc of 483, so she doesn't see the need to test any further.

Mary This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

It is sometimes so hard to keep the "testing" for LQTS straight. The genetic test that Familion does is very accurate ( someone mentioned 99% and that may be right) but we still don't know all of the gene defects for LQTS. What that means is that your physician can diagnose LQTS based on your symptoms and your EKG but the Familion genetic test can be negative. This does not mean that you don't have LQTS but just that we don't yet know your mutation.

However, if you know the "family" mutation (from a positive Familion test) and you get tested for that mutation and are negative then, chances are, you don't have LQTS. If you EKG and symptoms still say that you have LQTS then you need to look further for the cause. I can help you individually with this if you email me directly at SADS.

Yes, I would like your help for determining what else maybe wrong if the testing is neg.

Just let me know how to contact you.

Mary

My son had an ICD implanted on August 22 after being diagnosed with Brugada syndrome. He had a cardiac arrest at his first day of cross country practice four days earlier. Our family physician called me to inform me that they would like Eric to have genetic testing performed. The SADS website has been very helpful to me. However, there is little reference to Brugada syndrome. Do you know if the familion testing is as accurate for Brugada as it is for Long QT?

hello karleen
i am so sorry to hear about your daughter. we have 3 girls 19, 18 & 11 and our middle daughter was just diagnosed with long qt a few months back. she loves her softball and basketball big time and has played since a child. she has played some pretty intense basketball games and with all her sports etc. never had any symptoms until she went for a high school sports physical when the doc noticed something and suggested to get it checked out. thank god we did or she may not be here today. thank god for the technology we have today because 8-10 years ago there was no way of knowing this thing ever existted. and as a matter of fact she is got a second opion today with the same results. so now she seems so lost without her sports and it really hurts us to see her like that. we are also trying to get the insurance co. to help or cover the genetic test for me and my wife as niether of our familys have any history with heart conditions or anything like it and i have a large family. however they just declined us a few days ago. but we are going to appeal it and her doctor and the hospital is also backing us up with the appeal. so we have to wait and see for now. and i am looking to find a good support group on line where she can maybe talk to other teens about thier situations etc. if anyone knows one.well i am not much on wrting but i will keep this thread
informed. good luck! god bless you and you family!
gil

Tinamarie and Maureen,

I wanted to let you know that I purchased an AED for my son who is still going through the testing for Long Qt from a company called Allegro Medical Supplies. I believe their website is www.allegromedical.com. It is a Headstart, by Phillips and very user friendly. Unfortunately, my insurance did not cover it and the cost was $1200.00.

On another note, I was wondering about the genetic testing. My son had the familion test done and we just (11/24/08) got the results back that it was negative. We have not had a chance to sit down with the Doctor yet to go over everything, but I was wondering if the children that came back negative on the test were still put on meds as a precautionary measure and if not, what did they recommend? I am still trying to put this all together and do not want to put my son in harms way.

Thank you and good luck with the AED.

Kerri