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Your child’s primary physician can assess for causes of acute pain, such as an ear infection. Pain specialists can consider more complex causes of acute or chronic pain. Complex care and palliative care clinicians bring expertise when there is no easy answer for the return of pain symptoms.
Neuropathic, Acute and Chronic Pain
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Tissue injury and inflammation can cause acute (nociceptive) pain. Nociceptive pain generates an expected and protective pain signal, and subsides once the source is treated (e.g., an ear infection or a broken bone). Chronic (recurrent) pain may be caused by signals generated by the nervous system. When impaired, the nervous system can generate nerve (neuropathic) pain. This pain can be reduced with medications and other interventions, but there are no tests for this type of pain and it cannot be cured. Acute pain may also be experienced in the setting of chronic pain. Symptoms may suggest breakthrough or additional pain from the impaired nervous system, or a new cause of tissue inflammation or injury.
ESP There may be more than one reason for chronic pain. Identifying each contributing problem is part of chronic symptom management. Acute pain caused by injury (nociceptive pain) generally can be identified by history, physical exam and tests. Some causes of acute pain can return; for example, some children have a risk for recurrent ear or bladder infections. Chronic pain sources may also include menstrual cramps or recurrent intestinal gas from small intestinal bacterial overgrowth. You and the team then know to consider these causes when pain returns. Sometimes an identified medical problem could possibly cause pain, but is not the cause of pain at the moment. Hip subluxation and gallstones are examples of problems that can, but do not always, cause pain.
Neuropathic Pain
Pain due to changes in the brain’s relay center for sensory signals between the body and the brain is called central neuropathic pain. Visceral hyperalgesia is another form of neuropathic pain, in this case caused by changes in the nerves that send sensory signals from the gut to the brain. Autonomic dysfunction can cause similar pain sensations. Together, these can be considered forms of neuro-pain, meaning pain generated by the impaired nervous system.
Common clues of neuropathic pain include recurrent muscle spasms or dystonic movements after treatment for these muscle-related issues, and gastrointestinal symptoms that continue after treatment of GERD or constipation. Another common clue in children with SNI is seizure-like events, although an electroencephalogram (EEG) may indicate that these events are not seizures. All three types of chronic neuro-pain present similarly and are treated with the same medications and non-drug strategies.
Acute and Breakthrough Pain
There are a number of possible reasons for a child experiencing chronic pain to also have acute pain episodes and/or breakthrough symptoms. These include new causes of injury or inflammation in the body, such as from a bone fracture or different causes of infection. The impaired nervous system can also cause breakthrough symptoms even if a child is receiving medications to dampen nerve pain. The goal of medications is to decrease the severity of episodes and how often they occur.
As a child’s neurological impairment progresses, determining the source of the new pain can be difficult. In general, it is not necessary to have every breakthrough episode assessed; in fact, this would likely put too much burden on you and your child. You will learn what breakthrough episodes look like and how well they respond to interventions at home. This will help you know when something is different, and will help the medical team establish what treatment will make the best sense during a subsequent occurrence. Contact a clinician if you identify a new symptom or behavior, or if symptoms seem more severe or are not responding to your usual interventions, or if something just doesn’t seem right to you.
Medication
Approximately half of children with SNI experiencing chronic pain receive two or more medications for pain. Medications can dampen pain signals in children with an impaired nervous system, and two medications that work differently might provide more benefit than either one alone. While medications and some non-drug strategies can decrease how often the pain episodes occur and the severity of each episode, breakthrough episodes can still occur, meaning that the pain or other symptoms return after a period of symptoms being controlled by medications and other strategies. The medical team can develop strategies for times when breakthrough pain episodes occur. These strategies are often referred to as rescue strategies.
Parents naturally worry that medications for pain will cause their child to be too sleepy. Chronic pain is exhausting, and increased sleeping in the first week can indicate that the drug is actually having the desired effect. When chronic pain is first improved, your child may sleep more or for longer periods until better rested. A medication dose can later be decreased if your child continues to be sleepy. It often is preferable to continue the medication started for pain and to lower the dose of a more sedating medication once pain management is improved. Your natural preference will likely be to see your child awake, but sometimes it is not possible to have the perfect balance between comfortable and awake. The medical team will work with you to achieve a good-enough balance for your child.
Non-medication Options
These options have various names, including complementary and adjuvant therapies. Some interventions are used on a scheduled basis, including therapeutic massage, deep pressure, music therapy, pool therapy, acupressure and acupuncture. You may even notice your child remaining more relaxed for some days after each session. Other interventions, including a warm bath, a weighted blanket, a vibratory mat, placing in a large bean bag chair, and/or removing an orthotic can be helpful during breakout episodes. Physical therapists, palliative care teams, and community hospice can help explore and provide some options.
ESP Seeing your child in pain or discomfort is very stressful. Naturally, you want to understand why your child is experiencing pain, and you may become frustrated if there is no easy answer or solution for your child’s discomfort.
Many different issues can contribute to symptoms, and there can be more than one source of symptoms. The origin of some symptoms can be more easily identified than others. You will learn what certain breakthrough symptoms–symptoms that occur again after they have been treated–look like and how the symptoms respond to in-the-moment strategies and interventions. It is also possible that you will see an episode that looks like other episodes, but then changes in its form. Sometimes the body becomes more sensitive during decline, and chronic pain might be more difficult to manage. There may be a new response to a medication or treatment that your child previously tolerated.
The best way to identify the source of pain may be to conduct a time-limited trial–withholding an intervention that you and the team suspect might be the source. For example, a child who once tolerated a cough assist device may find it too stimulating as their neurological condition worsens. It is important to remember that stopping an intervention is often about finding the answer that best allows your child to be comfortable, not about giving up. What has been stopped can be restarted. The palliative care team can help you in this process.
While there are many challenges to navigate, there are also strategies to help you manage. The most important strategy is to trust yourself, and work with a medical team that you know will approach this complex problem as a partnership in which views are respected. This is not about being right or wrong. What helps most is that the partners keep an open mind and are committed to working together.
Remember, as your child’s pain detective, you’re tracking a challenging case and you can’t always know what is going on right away–so don’t feel guilty if you have not immediately contacted the medical team. When something doesn’t feel right, talk with the team. It may be helpful to share your worries with a social worker or other trusted member of your child’s team. They will likely remind you of all the ways in which you are doing a very effective job at this very difficult work.
