Nanette's Story

Here's our story:

My 13 year old daughter Courtney fainted and had a secondary seizure with no warning. Her only previous symptom was about 6 months earlier, when she fainted and immediately regained consciousness in school. She was taken to the emergency room by ambulance, and they did an electrocardiogram. The technician crumpled up the paper, said there must be a problem with the machine.
He pointed to the "Borderline Long QT Syndrome" and tossed it in the wastebasket. He ran a second ecg, which was normal. They ran a cat scan since she had hit her head on the floor, and it was normal. They sent us home in the middle of the night and told me to take Courtney to her pediatrician on Monday to be checked out. The Dr. called me Saturday morning and asked me to bring her right in. I pulled the crumpled paper out of my purse and showed it to her - the dr. was shocked that they hadn't examined the ecg more closely.

She said that it probably wasn't LQTS because it was so rare, and there's no history of sudden death in either side of Courtney's family. We went to a neurologist for an ecg, which was normal. The neurologist thought it was a seizure disorder and recommended an anticonvulsant to prevent a recurrence. When I researched the drugs recommended, I hesitated and continued researching 15 hours a day on the internet, library, and calling everyone who might have a clue.
I found the SADS web site and remembered the pediatrician's advice to continue checking the heart with a holter monitor and possibly a stress test if the ecg was normal. We went back for a holter, and Courtney showed QT intervals in the 6 & 700's. Her stress test showed the same, and her diagnosis was confirmed within three weeks of the initial episode. We started her on Atenolol daily, and she has had no recurrence.

I feel so grateful that we were promptly diagnosed. Courtney's father had more symptoms than I had, so we assumed that the LQT came from his side of the family. I have remarried, and when Courtney collapsed I was 5 months pregnant with my second child (with my new husband). I couldn't have a stress test while pregnant, but my ecg's and holter monitor results were 'close enough to normal' to wait until after the baby was born for further testing.
Baby Allyne arrived September 23, and she spent her first four days in the neonatal Intensive care unit. Her QT interval was slightly prolonged, but the doctors kept telling us that's normal for a newborn. After we came home from the hospital, I took Ally in for weekly ecg's, on which her qt interval never got any shorter, and then got more prolonged. When she reached three months of age, the pediatric cardiologist recommended medicating her with Propanolol since it looked like the LQTS diagnosis was here to stay. I then went for further testing with a Dr. who has worked with SADS.
He said that my ecg could be interpreted a lot of ways, in that some QT intervals were normal, and others were clearly prolonged. I wasn't planning on writing a book...deep breath!

Presently we are gathering ecg's on every member of our family and are participating in a genetic test conducted by Dr. Mark Keating in Salt Lake City, Utah USA. I guess I am still in shock. I was so certain that the gene was from my ex-husband's family that it came as a surprise when the baby tested positive. Then I knew that I had to be the carrier since the girls have two different fathers.
Everyone says there's very good protection from beta blockers, and then they talk about how they have restricted their lifestyle significantly and changed their exercise and activities. I'm still trying to figure out how much impact this will have on our daily lives. We have the baby on an apnea monitor when she sleeps, especially since last spring's reports linking LQTS to Sudden Infant Death Syndrome.

Nanette