SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Kerri,

Is your family gene already known? Was your son tested against someone else in your family's results? If not, you may want to discuss keeping your son on meds with your doctor. Since not every gene has been detected, your son could get a negative result but still have LQT. It's important to keep an open dialogue with your doctor about possible treatments, even with negative genetic testing results.

I wanted to let you know my son had sudden cardiac arrest in March and has an AICD implanted. He had a QTc of 600. He had the Famillion test and came back inconclusive. He had polymorphisms on LQT 3 and 5. He is currently in some other LQT studies around the country where they are researching other genes of LQT. Just because the test came back negative doesnt mean he doesnt have it!! How did they discover it? My son who is 7yrs old had no symptoms or problems prior to the event in March, he just didnt wake up one morning. Thank god we went to check on him. He was on meds for ADHD at the time and along with sleeping(slow heart rate) and our burgler alarm going off(one of the LQT genes/sudden alarms and noises) all factors sent him into cardiac arrest.

Our insurance company also denied us for and AED. I fought with them and got the name of the VP and summited a letter with a picture of my son. This brought the attention to the person and not an ID number as we are all referred to. They can make exceptions on an individual bases and in our case it was approved. Sometimes we have to personalize the situation and put it into maybe words that make them think about there own children or grand children, what if it were them. Dont give up and fight. Also the local media is a good way too. If the insurance company wont help maybe the threat of bieng in the media will work.
Best of luck
Rebecca Knowles

Rebecca,

Thank you for you response. We found our son's Long Qt by chance. We were getting an innocent heart murmur checked and during a normal ekg, the cardiologist picked this up. Although, he said it is borderline (in the gray area) we are taking precautions. I have had three opinions, one from CHOP, one from Boston's childrens hopsital and the other from Neumurs at Dupont in Deleware. One of the doctors says he thinks everything is fine not to worry and the other two are concerned.

We are obviously going the route of the concerned, but it is so helpful to hear other stories, that are similar to ours. My heart goes out to those who have lost loved ones and have no anwsers.

Again, thank you for taking the time to respond, the more information we have the more empowered we will be.
Kerri