Wreaking Havoc: An Endless Cycle of Pain

My son, Leland, had always had a lot of bleeds but there was nothing unusual about them. There were the usual disruptions in day-to-day life—he would occasionally miss school or need to use slings, crutches, or wheelchairs—but we were able to treat the bleeds and get on with our lives.

At times, minor pain accompanied his bleeds. The pain would last a day or two, but fortunately, it would respond to Tylenol^® or a mild narcotic. I still felt like we were able to manage his hemophilia in a way that disrupted our lives as little as possible.

Then, when he was around 11 years old, the pain suddenly got much worse. Although Leland experienced only a simple bleed in his fingers, he complained about the pain like he never had before. We didn’t understand why, but again, we dealt with it.

Unfortunately, that was only the beginning. Since then, all of his joint and muscle bleeds have a large pain component, which has added a new layer onto treating bleeds that we didn’t have before. It wreaks havoc with everything. He misses a lot of school, and activities often have to be cancelled. There are times when we can’t do anything to make it better. He just has to get through it.

Leland’s pain has several components to it. One is the acute pain that accompanies an active bleed, which is caused by the swelling and pressure in the joint. At this point, Leland has built up a resistance to most pain medication so we often have to go right to OxyContin. If that doesn’t make the pain bearable, he’s admitted to the hospital for IV morphine.

The other pain component is neurogenic, which lingers even after the bleed has resolved. It’s as if the nerves get irritated or “turned on” from swelling, and this nerve response does not shut off after the bleed resolves. At first, we couldn’t understand how he could still be in so much pain, days or even months after the bleed resolved. With the help of pain specialists, we now know that he’s not faking or exaggerating it—the pain is very real. Unfortunately, neurogenic pain is not responsive to narcotics. This pain also makes the bleed more difficult to treat, because pain is one measure of how well the bleed is resolving. It’s hard to tell whether the bleed has stopped when the pain continues indefinitely.

Another important piece of Leland’s pain is the psychological component. He recently went through a particularly tough time. From November 2004 until March 2006, he was in pain all day, every day, at varying levels of intensity. Minor pain would quickly escalate to major pain. I watched helplessly as his spirit and coping skills deteriorated. Leland had been through so much for so long that he had no reserves left from which to draw to help him cope.

It’s scary. There have been many times that he’s screaming into a pillow, just screaming, for hours and there is nothing I can do other than rub his back and hold his hand. Leland will be on IV morphine in the hospital and he is still not comfortable. The pain will come in a wave and he’ll say “Mom! Mom! Mom! Mom!” I rush to his bedside and he’ll squeeze my hand as hard as he can. The spike in pain lasts anywhere from 5 to 10 minutes, then it seems to flow out of him. There’s a break where the pain subsides to a tolerable level, which can last for minutes or hours...and then the cycle starts again.

As a mother, it’s heartbreaking to watch him go through that. Yet I think that it has created a special connection between us. Not that other mother-child relationships aren’t strong and bonded, but going through what we have in the last two years has created a depth to this bond. We’ve been to hell and back together, and we’re still here and we’re doing this together. We have a great relationship and I’m very thankful for that.

We have no clear or comforting answers from his doctors as to why this is happening. They just say, “Oh, he’s kind of getting at that age where we start seeing kids experiencing more problems.” But that’s the end of the explanation. Well, WHY do adolescents have more problems? Is it hormone-related? Are growth spurts affecting it? Is it the accumulation of bleeds? I haven’t been able to get answers to these questions.

This is, by far, our biggest challenge. Before Leland started having this pain, we were at a really good place in managing his hemophilia, even with the added challenge of his inhibitor. We had a handle on things and were living very full lives. The pain has taken that control away from us and has kind of shaken my faith in his future. I know it has changed Leland’s perception of his future and I know that worries him.

Because of the debilitating pain, he’s missed a huge amount of school. What happens when he’s in high school, college, or has a job? You can’t miss that much time and make it up. I’m hoping that we figure out a better way to deal with this, and soon, so that he is able to live a full life.

My general feeling is that, while we’re going through a really tough phase right now, it will get better. I can’t imagine that this is the way it’s going to be forever. We just try to focus on the positive.