Comparing with Others

As you know, two of my three sons have PC. That means they have the exact mutation so you would think all of their symptoms would be exactly alike. However, it’s interesting to me how differently PC affects each of them – especially in regard to pain.

Nate, who is now 10, walks around like he has no pain. At the end of a very busy day, especially if he’s worn boots or shoes all day, his feet will hurt and feel hot – and he doesn’t like that feeling – but he’s still okay. Nate is also playing football during recess at school and snowboarding every weekend.

Sam on the other hand, who is 12, can barely make it through school on his feet. He comes in the door at the end of the day and falls to his knees in pain. He does walk quite a bit in his regular day and he doesn’t stop doing what he needs to do because of his feet, but he is clearly in agony when he gets home. It’s not a rare thing for Sam to look absolutely fine around other people, and then when we’re all alone, he’ll drop. For example, if I pick him up from school, he’ll be with other kids, talking and smiling. Then the second he’s inside the car and the door is shut, he is groaning from pain and pulling his shoes off as quickly as he can.

Sam also is my boy who seems extra sensitive to the heat. He often wears sandals in the winter or at the very least some kind of canvas shoe that is cool and breathable. Nate, on the other hand, can wear closed in shoes or boots in the wintertime and be all right.

I’ve observed this same thing in other PC families I’ve met – siblings with the same mutation and one walks more or less than the others. It does not mean one child is “tougher” than another. I understand that although we have the same mutation in our family, as individuals, we have modifier genes, other genes that affect the way PC and the associated pain manifests itself.

For our own little PC family, we have learned not to compare with one another. No one can say mine hurts more, or we are the same so that means you must be faking it. Also, though Nate seems to be doing better than Sam right now, these roles have been reversed in the past. Who knows how they’ll each do when the weather gets warmer? I’ve also learned that kids will be kids and nothing will stop them from doing what they want to do. So if a child falls to his knees in pain when he thinks no one is looking, you know the pain is real. Each child must be supported and his pain be taken at face value.