PVC & long QT

[cpenner]

Hello -
I am very concerned about my 16 and 14 year old boys. The past year has been a long one for my family. My 16 year old niece passed out and had a seizers. She was then diagnosed with long QT syndrome. Her QTc was 606 on her ECG. She now has a pace/defib along with medication. The cardiologist sent her for genetic testing to see what side of the family this was on. Results typed her as a I & II. My younger sister's-her mother- ECG was "normal" but genetic testing found her as type II, as did her other daughter. I have PVC averaging 5 per minute. I also have a lot of black outs, but I do not pass out. I have passed out once, but this was 4 days after giving birth to my 4 year old son. I have shared these concerns with my primary care doctor. But since my ECG is "NORMAL" he does not seems too concerned. Three weeks ago I received a call that my niece, from my older sister, had a baby. Two weeks later my niece passed out went into cardiac arrest at 20 years old. She was diagnosed with long qt syndrome, but due to the lack of oxygen to the brain the neurologist gave her a 2% chance of waking up. This is extremely hard for my family. and I am very concerned and about my two teenage boys. Do you have any suggestions on how to get the doctor to write a script for the genetic testing?
-cpenner

[Momto3]

I'd also insist on the testing.  Find an electrophysiologist in your area who is familiar with LQT and explain why you are so concerned.  The EKG will tell a lot, and that may be a great place to start, but I'd have an EP involved.

I hope that your niece recovers and is able to lead a healthy life with her new baby.  Sending lots of positive thoughts your way.

Take care
connie

[BionicBabe]

Demand to be tested and if your primary won't do it, demand to be referred to an electrophysiologist or cardiologist! If that doesn't work, switch doctors if you can. I'm sure you've told your doctor of the family history. What else does he/she need. Perhaps if you tell him you want it documented on your children's charts that you've demanded the genetic counseling it and it's been refused and you're going to see another doctor and possibly consult an attorney, that might help. I don't know. Good luck!