My daughter suffered a rare complication — again and again

As told to Faigy Peritzman

MY daughter Rikki is three years old. She’s a precocious, adorable kid.

She’s also been sent to the emergency room way too many times in her life, all because she has a unique medical condition no one had ever seen before.

It started when she was three months old. She had an ear infection that wouldn’t go away, so we started treating her with antibiotics. On the third day of her taking antibiotics, I picked her up from her crib to find she was shockingly cold.

I took her into my bed with me, but I couldn’t get her to warm up. Taking her temperature, I saw that it was below the threshold, at 35.5°C (95.9°F). She was also sleepy and completely out of it. I was very scared and ran to the kupat cholim. It was Friday morning (medical emergencies always seem to happen on Fridays), so my regular pediatrician wasn’t available. The doctor on call dismissed my concerns and told me Rikki was just recuperating from the ear infection.

Rikki is my youngest, and I have a houseful of kids. I knew this reaction wasn’t a normal one. I promptly made an appointment with a private pediatrician. This pediatrician took one look at Rikki and said, “This child is in shock. You’d better go straight to the ER.”

In the ER at Hadassah Hospital, they did blood work and started Rikki on an IV drip, thinking maybe she was dehydrated. She seemed to be doing better on the drip and was more awake, so after a few hours of IV, they declared it was fine to take her home.

But when I got home, I went to change her diaper and saw it was full of blood. I quickly called the ER and they told me to rush right back.