Growing Up with CIPA
Children learn not to touch something hot the first time they get burned. They cry when they scrape their knees. But a child with congenital insensitivity to pain is different. Many parents discover their child has an insensitivity to pain when an accident happens that should make the child cry, but doesn't.
After parents notice all kinds of bumps and bruises that don't faze the child, they try to figure out what's wrong. Because congenital insensitivity to pain and CIPA are so rare, it might be difficult to get a diagnosis at first.
Teething is a big hurdle to overcome for children with congenital insensitivity to pain. Just like any teething baby, they want to gnaw on everything in sight. But because they don't feel pain, they don't know when to stop. They might chew through their tongues or bite their fingers until they bleed. Babies don't understand directions, so you can't just tell them not to bite so hard. Some parents find it makes sense to remove the child's teeth -- once the child's adult teeth grow in, he'll be old enough to understand when not to bite. But this removal of teeth can make eating more difficult. At a time when other children their age are learning to enjoy solid food, kids with CIPA are developmentally behind. Also, people with CIPA often don't feel hunger pains, so eating feels like an unnecessary chore.
Other very common injuries for children with CIPA are corneal abrasions and other serious eye injuries. These come from scratching or rubbing the eyes too hard. Some children have to wear protective eyewear or use special eye medicines.
Toilet training also tends to be difficult for children with CIPA or congenital insensitivity to pain. They have difficulty telling when they need to use the restroom and often suffer from constipation due to decreased intestinal motility, so toilet training can exceptionally difficult.
One of the biggest dangers for a child with CIPA is overheating. The "A" part of CIPA stands for anhidrosis -- the inability to sweat. Sweating is important -- it's a way for your body to regulate its temperature. When your body can't get rid of excess warmth, such as on a hot summer day or after exercise, it overheats. This can lead to febrile seizures (seizures brought on by fever or overheating) and even death in serious cases. A child with CIPA can break a leg and never notice. Fractures and burns are very common. A problem that's more difficult to deal with is joint deterioration. People with CIPA tend to overwork their joints. When you're sitting or sleeping and you're uncomfortable, you adjust your position to take stress off a certain area of your body. Someone with CIPA won't, and the extra wear and tear can cause swelling and serious injuries to the pelvis, knees and other joints. People with CIPA often suffer from osteomyelitis, a bone infection that can result in reduced limb or joint function and even amputation.