STERLING, Colo. - As temperatures drop outside, one Colorado family has to battle a rare condition that causes an allergic reaction to cold temperatures.
Mike and Melissa Frankenfeld, of Sterling, Colo., first noticed the painful rash on their son Connor when he was 3 years old.
"When it first started, it started in the diaper area so they told us diaper rash. Then it went to diaper rash with a staph infection. Then it went to winter's itch, which is when the skin gets really dry in the winter,” said Melissa.
The Frankenfelds tried different creams. They tried just letting the area air-out. Yet, nothing seemed to work. In fact, Connor’s parents said it seemed to keep getting worse.
“I think that winter we got maybe three hours of sleep a night, just from him screaming and demanding to be in a warm bath," Melissa said. "We went to doctor after doctor after doctor and nobody could tell us what it was."
It got so bad, that after a day playing in the snow, Connor’s whole arm started to swell.
"We took pictures. And we would say this is what happens when he gets cold. I had one doctor tell me that I was nuts,” said Melissa.
It was Dr. William Lanting, with the Asthma and Allergy Center of the Rockies, who finally cracked the mystery.
A simple test using an ice cube, held against the skin for three minutes, resulted in a hive. Dr. Lanting said that reaction proved Connor has a condition called Cold Urticaria.
It’s such a rare condition, said Dr. Lanting, that in three decades as an asthma and allergy specialist he has only seen 4 or 5 cases.
Yet, months after Connor was diagnosed, the Frankenfelds learned that his sister, Taylor, 8-years-old, has Cold Urticaria, too and her condition is even more serious.
“Taylor, from walking under an air conditioning vent at school last year, has had a body-wide reaction to where her throat started closing,” Melissa said.
In fact, Taylor started going into anaphylactic shock.
"I just feel my throat start to feel funny and it was feeling like it was getting bigger,” said Taylor. “I was really scared. I thought I was going to die.”
Taylor said the reactions are more than just scary. They’re painful, too.
"When I get up and I have a reaction my feet usually hurt so bad I just want to be carried everywhere," she said.
So, why not move to a warmer climate?
"You can't get away from it. You know, with Taylor and the air conditioning vents. You go somewhere warm and there’s going to be more air conditioning vents on,” said Melissa.
Furthermore, Dr. Lanting said, "There's an interesting phenomenon. Many people who have this are living in the southern part of the United States."
More research is needed. Dr. Lanting said it is unclear exactly what causes Cold Urticaria, why it shows up when it does and whether the condition will get better or worse with age.
“We know it probably never goes away. But, we don't know that it worsens. We don't have studies on that. Again, because it's something that's so sporadic and unusual, we don't have great studies," he said.
However, he said the treatment is fairly simple. People with Cold Urticaria can manage the condition with antihistamines.
“It’s just a matter of which one and what dose,” said Dr. Lanting.
Plus, the Frankenfelds have found other ways to cope.
“I usually have to put on, like, everything I have. Like gloves, scarf, a jacket, a coat," said Taylor.
The children aren’t allowed out of the house when the temperatures dip into single digits.
Taylor and Connor spend a lot of time cozied up on the couch.
“Yeah, you have to get them warm, you have to give them the antihistamines and you just have to watch. It’s kind of heart-breaking because they spend a lot of time just zonked,” said Melissa.
It’s not easy being a child with Cold Urticaria.
"Well, there are sometimes when I feel like I'm not an ordinary kid,” said Taylor.
For now, the family continues to search for answers. They find support through a Facebook page Melissa set up for families to share information about the condition.