SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

While surfing the net I came upon a website named www.aedgrant.com I did not check into the web site, if you feel you need an AED for your home check it out.

Maureen

Was this daughter that died the one that was told she was negative for Long QT? I understand your loss and anquish, the emotional strain and worry is a constant companion.

I have lost 2 children at this point and the other 2 have been genetically found to be Positive by Familion, as well as my grandson who is 8 mos old (his mom died due to a sudden cardiac event when he was only 5 weeks). However, is it 100% correct. I have 2 nephews and a sister that have >450 EKG and palpitations yet the Familion test was negative for my sister. Yet, she feels better than she ever has on the beta blocker- can she trust that negative finding or should she seek more answers? As a child my sister did have symptoms.

Yes a family member could show negative for Long QT Syndrome and still be postive one-quarter of families that have definite LQTS will receive a negative genetic test result. Thus, if the suspicion for LQTS is high, a negative genetic test cannot and should not be used to "rule out" the diagnosis. In other words, if test results are negative, a patient may still have LQTS.

I am sorry to hear of the loss of you daughter, 5 weeks after your grand child was born.............. I was like a lunatic when my daughter was pregnant calling specialist and checking with cardiologist checking websites. From what I learned the first six weeks after giving birth are the most dangerous for the Long QT Mother. When my daughter gave birth I was a nervous wreck all I wanted to do was to see her and make sure she was okay and I cried when I saw she was fine. My daughter and her family moved in with us while my daughter was on maternity leave. I made sure she got plenty of sleep which was tough considering she was nursing. My son-in-law took very good care of my daughter and grand daughter.

Your pain must be so deep, with your losses. I wonder sometimes why!!!!!!! But, there are no answers.

To answer your question my daughter Kerry Ann who died at 21 years old , had no symptoms for Long QT at all. Kerry Ann was tested at 12 years old in 1998 with an EKG, the genetic testing was not available in 1998, when my older daughter was diagnosed.

Hi I just read your discussions, My son who is 7yrs old was found by my husband and I in bed in cardiac arrest4 months ago. I began CPR and he was shocked 3 times by ambulance. Our burgler alarm went off in the morning when my husband came home from work. We had no history of LQTS and he never had any medical problems or symptoms. When he didnt wake up after the alarm went off (which he normally would upset from the noise) we got worried. We found out the time he was without O2 and Heartbeat was 12 min. He was in a coma for 4 days and put in hypothermia to try reduce/prevent brain damage. He woke up and is ok now(that therapy saved his brain) and had surgery for ICD. He was diagnosed with LQTS (QTc 600,now 491) I wanted to let you know that I got the Familion test paid for. I was denied 2x but I contacted a friend who is a federal judge, he got me the name of the VP at BCBS. I told them the story and they made an individual exception(Familion is considered out of network which I have no coverage for out of network).
DONT GIVE UP, and go to the public if you need too. (TV and Paper).
I recieved the result today and they said he was negative for the known LQT. He had 2 polymorphism though. both of them were found on the 2 genes identified with LQTS 5 and 3. So I guess I am wondering what the deal is now. per Dr Moss's team this doesnt mean he doesnt have it but that its not one of the identified one's. My real concern is for my younger son, now we have no answers for him considering my older son died during sleep.

Does anyone have any suggestions or knowledge regarding these test result?

We actually have a short list of labs here in the office that can retest after your familion tests come back negative. If you'd like to call or email me, I'll be happy to put you in touch with someone who might be able to retest your son.

that would be great if you could let me know how and what to do