When Sherry Johnson’s* son, Mark*, was three years old, he had a joint bleed and was brought to his local hemophilia treatment center (HTC) for a peripheral infusion. Although the staff tried to distract him, Mark had to be held down during the procedure.
“It brought me to tears to see my child screaming and fighting like that,” Sherry says. “It’s hard because I know he needs his medicine and it will help him, but the screaming goes right through you. There’s nothing you can do—you can’t take the pain from him, you can’t make it go away and you can’t make him understand. You have to hold it together until the end. On one occasion, when it was over, I went into the bathroom and locked the door and lost it. It is the most helpless feeling imaginable.”
Almost every parent of a child with a bleeding disorder can testify that knowing your child is hurting—and that you can’t make it stop—is one of the most heart-wrenching feelings you can experience as a parent. When your child has hemophilia, dealing with pain can be a frequent occurrence. Over time, it can put tremendous stress on the entire family.
Children with hemophilia experience pain from two main causes—bleeding episodes and factor infusions. Pain caused by bleeding episodes can be either the result of an acute bleed or discomfort from bleeding into a joint. In many cases, it may be difficult to determine if your child is having an acute bleed. For example, we may see a child in our treatment center who is complaining of stomach pain. Often the parent is unsure whether it is a bleed or a stomach bug. This can also be difficult for the medical staff to determine. By asking questions such as “Is anyone else in the house sick?”, “Has your child eaten today and, if so, what?” or “What kind of activity has your child been involved in today?”, the doctors and nurses at the HTC can begin to determine if there are other possible causes. Sometimes the only way to know for certain is to send the child for a CT scan to rule out a bleed. Several signs will help you determine if an acute bleed is starting or progressing:
- Watch for a Change in Behavior:
Karen James’* son, Eric*, now four, had his first bleed when he was seven months old. “I picked Eric up from day care and he wasn’t his usual happy self,” says Karen. “He was clinging to me and whimpered when I picked him up. I knew something was wrong, but I didn’t know where the problem was.”
In your infant, you may observe crying, whimpering, grimaces, furrowed brows, quivering chin, withdrawal of the affected area of the body, thrashing, irritability or fussiness. As you get to know your child, you will know when he is acting out of character. When he reaches preschool age, your child may be able to verbalize that he is in pain, but may hold off out of fear of needing an infusion. In this case, the child who is usually very active may be sitting and watching TV or reading, and may not be willing to get up and play when invited. An older child may deny that he is having pain because the interruption in his activity is unwanted.
- Watch for a Change in Physical Movement:
About one hour after Karen picked Eric up from day care, she noticed that he began to move differently when he played. “I would watch him pull himself up, but noticed that he would raise one leg up like a dog,” she says. “I was then able to locate the problem and check his leg. It turned out he had an ankle bleed and, because it was in the evening and the treatment center was closed, he needed to go to the emergency room (ER) for an infusion.”
When bringing a child to the ER, parents should bring factor with them—not all ERs are stocked with factor product, and not all ER doctors are familiar with hemophilia. Time is of the essence when it comes to effective bleeding management, and long waits at the ER make it more difficult to treat pain efficiently. Whenever possible, a parent should bring educational material to the ER and encourage the ER doctor to contact the HTC.
Acute bleeds are painful. If your child is having one, he will likely modify his physical activity. You may notice an infant crawling differently, or a toddler walking with a slight limp or turning his foot to the inside or outside. A child who typically plays or writes with his right hand will use his left hand instead. Preschoolers often like to play while squatting, or will squat to pick up objects; you may notice that your child is now bending at the waist to pick up objects or sitting to play. He may hold the affected area very still—for example, swinging only one arm naturally when walking while the other arm lies still at his side. Often these subtle signs can be observed prior to any outright signs of a bleed.
- Watch for Signs of a Bleed:
A joint or muscle bleed is typically red, warm, swollen and painful to bend or flex. Your child may complain of tingling, burning or pain in a specific area. There may be pain when pressure is applied. Ask your HTC for literature on specific types of bleeds and recommendations for handling them. Become familiar with types and locations of bleeding episodes, especially those that are potentially life-threatening. Seek medical attention as advised by your center.
The day may come when you doubt that the bleed your child tells you about is real. This does not necessarily mean the child is lying; he just might not be able to identify the bleed correctly. This is normal. It is important to believe your child when he says he is having a bleed; however, be aware of patterns that may develop, such as a child who always seems to have a bleed on the day he has an exam at school. Or, you may notice that your younger child reports that he is having a bleed just before the babysitter arrives for the evening or prior to your weekend getaway.
Over the years, we have had several families call the center, distraught because their child seems to have a recurring bleed at the same time on a weekly basis. These families report that their child is complaining of pain, but they don’t see any visible signs of a bleed. With further questioning, we often are able to determine the issue. Sometimes it is as simple as a child who wants to stay home and play video games instead of going to school. And sometimes it occurs when there is a new baby in the home and the child is looking for extra attention. Recognizing and gently addressing these patterns early is important. The HTC medical staff and social worker can assist you.
It is crucial to maintain an open line of communication with your child. Working closely with the HTC staff to provide the highest degree of comfort can help your child now and in the future. Although the HTC doctors and nurses are experts in caring for your child’s medical needs, don’t forget that you are the expert in raising and caring for your child. Encouraging your child to work with the center staff throughout his growing years will also give him a positive foundation when he reaches his late teenage years and begins to take on the responsibility of managing hemophilia on his own.
*Names have been changed