(NEW YORK) -- At age 5, Isaac Brown is learning the alphabet and simple addition. He's also figuring out another vital subject: pain. Isaac was born with a congenital insensitivity to pain, a disorder that means he almost never feels pain, even if he breaks a bone. Since he doesn't feel injuries, Isaac's parents, Carrie and Randy Brown, are teaching him how to identify them to stay healthy.
"The toddler years were an absolute nightmare," said Isaac's mother, Carrie Brown. "He would just drop to the ground and smack his face on the table. He thought the fall was fun."
Isaac has dunked his hand in hot coffee without flinching. He once placed his palm on a working oven burner without shedding a tear.
After breaking a cup one time, Isaac banged on his mother's door to get her attention with the broken glass. When Carrie opened the door, she found Isaac grasping the sharp edge of the glass. He didn't understand that the broken glass was damaging his hand with each strike. Although Carrie and her husband sought medical help, there is little doctors can do to treat Isaac's condition. After taking Isaac to a specialist, Carrie said initially she was told to watch him carefully and bring him in if he appears to be injured. In search of relief, the Browns googled "children who can't feel pain" and found a Facebook group called The Gift of Pain, where parents talked about their children who had the same disorder as Isaac.
While Isaac's doctors didn't have a lot of day-to-day advice for Carrie, the parents in the Facebook group had more detailed instructions about ways to care for Isaac. "We got a ton of ideas of people who have gone through it," said Carrie. "And let me tell you, they have been a gift to us."
One crucial idea was developing ways to "teach" Isaac to recognize pain and possible injuries. "We're doing the best we can to just teach him; he knows blood is bad," said Carrie. "We taught him even when he was little to say 'ow.' You don't have to tell normal kids to say 'ow.'"
When Isaac broke his pelvis after falling from playground equipment, Carrie said he was able to identify something was wrong with his leg even though it took a few x-rays and scans to figure out his pelvis was fractured. "He does feel [something], but the pain has to be 20 to 30 times greater to what we would feel," said Carrie, who explained Isaac couldn't pinpoint what was broken. "He thought his ankle hurt." In November, the family will go to "Camp Painless but Hopeful," a camp related to the Facebook group and that was conceived by the family of Ashlyn Blocker, a 13-year-old girl with the same disorder as Isaac and who made headlines in 2005 for her inability to feel pain.
The first year of the camp, eight families attended and Carrie said in the last two years she has come to rely on the parents for help and support. When dealing with such a rare disease, Carrie said the parents have been crucial resources of information.
Dr. Stephen Waxman, director of the Center for Neuroscience and Regeneration Research at Yale University School of Medicine, said the disease is so rare that doctors do not have a lot of advice on how to deal with it day–to-day and that it makes sense parents might turn to others in the same situation for advice. "There's not guidelines," for day-to-day care, said Waxman. "I think we doctors need to work with [these patients] and educate them and we need to learn more about this disorder so in the future we can come up with definitive and effective treatment." The Brown family is also working with researchers at the Mayo clinic in Rochester, Minn., who are examining Isaac's DNA in the hopes they can uncover which part of Isaac's gene mutated to lead to his insensitivity to pain. The researchers warned the family it could take between four to eight years to find the mutated gene responsible and there is the possibility that it will never be identified. And even if researchers identify the gene, it won't cure Isaac.
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