Pain impacts many people with bleeding disorders of all ages. Often it begins with a bleeding episode and becomes more persistent over time and with additional bleeds. But there are options for treating and managing the pain you are experiencing.
Children can experience pain, just like an adult. There are many approaches to help lessen pain. Nonetheless, pain can be a real cause of stress and fatigue for children with a bleeding disorder. By knowing how to limit and control pain, you can gain confidence in managing your child’s bleeding episodes.
This section of First Step covers:
What Impacts Pain?
Pain is an unpleasant physical and emotional experience. Pain is influenced by many individual biological, psychological, and social factors. Pain impacts not only adults, but also children with bleeding disorders. Pain can be difficult to manage because each person feels and responds to pain in their own unique way. In other words, pain is a subjective experience.
- The extent of illness or injury
- The presence of other illnesses or conditions
- Genetics—traits and variations passed down from biological parents to their children
- Anxiety, fear, depression
- Thinking the pain is due to something worse than it actually is
- Feeling helpless to manage pain
- How others close to our child react to the pain
- The daycare, pre-school, or school environment or demands
- Access to medical care
- Cultural beliefs
Types of Pain
In general, children with bleeding disorders can experience:
- Acute pain: short-term pain, often from an acute bleeding episode or after surgery
- Chronic or persistent pain: long-term pain, often from repeated bleeding episodes.
Your child may be unwilling to let you know that they are in pain. Babies and very young children may not be able to tell you about their discomfort. Here are some common signs of pain that you can look for:
- Mood changes
- Reluctance to communicate and interact with others
- Increased irritability
- Inability to concentrate
- Difficulty sleeping
- Decreased interest in favorite activities
- Lack of appetite
If allowed to go untreated or inadequately treated, pain can lead to more serious consequences. It can keep your child from having fun with family and friends, learning in school, and getting a good night’s sleep. It can have an emotional, financial, academic, and spiritual impact on everyone involved and can lead to feelings of helplessness and hopelessness.
Pain Assessment
Assessing the level and impact of pain can be difficult in children, especially if they are too young to say what they are experiencing. It can be hard to assess pain in children because of the many individual factors influencing the pain experience. Pain may be impacted by emotions, fear, stress, and anxiety. Often health care providers will use methods to help your child describe how much pain they have. One commonly used tool is a pain scale. There are many different types of pain scales. Some healthcare providers might use pictures of different faces from a relaxed face scaled up to a picture of a face of a person crying. Your child will be asked to point at how they are feeling. If you child is old enough, they might be asked to rate their pain on a scale from 1 to 10, with 1 being no pain and 10 being the worst pain they can imagine. Other healthcare providers might have you fill out a survey for your child. The survey will help identify how the pain affects your child’s day-to-day life.
Pain Management
The first step to treating your child’s pain is deciding if they are experiencing acute or chronic pain. If you suspect a bleed, giving your child their bleeding disorder medication to aid in blood clotting may be appropriate. But if your child’s pain does not improve after receiving their medication, it may be due to a cause other than a bleed.
P.R.I.C.E.
Treat your child’s acute pain by the acronym P.R.I.C.E.: Protect, Rest, Ice, Compression, and Elevation.
- Protect. Your child should not be using or bear any weight on the affected body part. You can help them by using a splint or brace. If your child’s leg is injured, crutches can be helpful.
- Rest. Have your child avoid using the affected body part for 24 to 48 hours. If a bleed is suspected, you can continue to use the splint or brace to limit movement and further bleeding. Crutches can be helpful if the injury is in the leg.
- Ice. Apply ice to your child’s affected body part. Ice narrows blood vessels and works to reduce pain and swelling.
- Compression. Apply elastic bandages to your child’s affected body part. Compression works to reduce swelling and prevent further bleeding.
- Elevation. Keep your child’s affected body part raised or elevated above their heart. Elevation reduces swelling.
If you want more information about P.R.I.C.E., please go to this P.R.I.C.E. handout.
Physical Therapy
Physical Therapy has been proven to aid in managing acute and chronic pain. Your child’s physical therapist will establish an individualized treatment plan based on their pain management needs. Some of the activities included can be pain education, manual therapy, myofascial release, therapeutic and corrective exercises, kinesio taping, orthotics, braces and splinting, or ergonomic and functional movement changes.
Psychosocial
Sometimes the experience of pain can be influenced by underlying psychological (affecting the mind or behavior) or social issues. These can be addressed through specific treatments, such as cognitive behavior therapy, mindfulness, or acceptance therapy. There are also treatment options available for pain associated with infusions and injections, as these are often accompanied by needle fear and phobia. The social worker and/or psychologist at your child’s Hemophilia Treatment Center will be able to either provide pain management treatments or connect your family with an appropriate healthcare provider in the community. Your child’s social worker may also be able to help you navigate any barriers to receiving the pain management treatment your child needs.
The pharmacologic management of pain is the treatment of pain using a drug or other non-food substance. This type of pain management includes over the counter (OTC) products, such as acetaminophen (Tylenol®), but also prescription drugs. Children should not be given Aspirin. Not only does Aspirin interfere with the blood’s ability to clot, but also can lead to serious side effects in children, such as Reye syndrome. You also need to be careful with giving your child nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen. These drugs can interfere with the blood’s ability to clot. In more severe cases, your child’s health care provider may prescribe non-opioid pain medication. One example is Celebrex®, which is a COX-2 inhibitor safe for people with bleeding disorders. Opioids are seldom prescribed to children, but if they are they must be closely monitored by a licensed physician.
Complementary and Alternative (CAM) pain management includes a broad range of methods, such as mind-body techniques and natural products. Many of these methods have not been widely researched. It is not fully known how well these methods work for people with bleeding disorders. However, they can be used in combination with more established pain management approaches and might aid in easing your child’s pain.
Remember to always check with your child’s healthcare provider before beginning any CAM therapy. This is especially important when considering giving your child any herbal remedy. Many herbs may negatively interact with other medications, and directly affect the blood’s ability to clot.
