Many kinds of pain affect children and youth with special health care needs (CYSHCN). Some children may have intellectual disability that makes assessing and understanding their pain more challenging, and others may have ongoing acute pain as part of their condition. This resource provides primary care clinicians with some insight into pain assessment and management strategies for children with special health care needs. See related topics for more details:

• Acute Pain in Children & Adolescents
• Behavioral Management of Pain
• Chronic Pain in Children & Adolescents
• Pediatric Pain Assessment & Rating Scales

Parent intuition
Parents with CYSHCN are sometimes frustrated when primary care, emergency room, and other clinicians do not respond to concerns about their child being in pain or “not acting like himself.” In general, parents should be considered the best source of information about what a non-verbal child is feeling. Parental feelings about pain or something being wrong should be taken seriously.

Neuro-irritability
In non-verbal children, there is a phenomenon called neuro-crying, neuro-irritability, and/or neuro-irritation that can be difficult to distinguish from pain. This crying might be the result of an immature or abnormal nervous system, but this is a diagnosis of exclusion; other sources of pain should be ruled out. Even without finding a source of pain, the medical home should work with the family on ways to alleviate the crying, e.g., upright vs. supine posture, changes in diet, and calming measures. The parents should be encouraged to take some time away, even for an hour or 2, when stressed by the crying. Notably, this type of irritability may respond to gabapentin. [Collins: 2019]

Harris J, Ramelet AS, van Dijk M, Pokorna P, Wielenga J, Tume L, Tibboel D, Ista E.
Clinical recommendations for pain, sedation, withdrawal and delirium assessment in critically ill infants and children: an ESPNIC position statement for healthcare professionals.
Intensive Care Med. 2016;42(6):972-86. PubMed abstract / Full Text

Hauer J, Houtrow AJ.
Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System.
Pediatrics. 2017;139(6). PubMed abstract

Interpreting the manifestations of pain should account for the developmental age of the child and their verbal ability/interest. In non-verbal children, it is often difficult to distinguish pain from agitation, such as a child with dystonic cerebral palsy whose agitation episodes may be due to an environmental stimulus that is not pain-related. Presentations of pain in children with special health care needs can vary widely and are often non-specific. Quinn et al. identified irritability, feeding intolerance, change in mental status, vomiting, breath-holding, and increased muscle tone or spasticity as presentations of pain in children with medical complexity. [Quinn: 2018]

Common sources that should be considered when evaluating a child with pain/irritability of unknown causes include ear infections, dental caries, fractures, constipation, skin lesions, urinary tract infections, and abdominal pain.

Several scales that focus on a specific age group or setting are available for assessing pain in infants and children. These and other scales are discussed in [Beltramini: 2017]; the use of such scales in children with medical complexity is discussed in [Quinn: 2018].

• For children with a mental age of ≥6 years, visual analog scales (VAS), generally using icons of faces reflecting various levels of discomfort/distress, are recommended. [Bailey: 2012]
• For those with a mental age of ≤5 years, behavioral pain assessments are recommended, including the:

The last 2 may be particularly useful for children with developmental/intellectual delay or autism.

See Pediatric Pain Assessment & Rating Scales.

Anxiety

Inadequate sleep

Acute Pain

Ongoing Acute Pain

Neuropathic Pain

Chronic Pain

Children who will be exposed to large numbers of procedures or will have ongoing pain issues (e.g., rheumatoid arthritis) should be followed by therapists, including Child Life, while in the hospital and Behavioral Health, to manage and minimize long-lasting effects of acute pain and preventing more complex, chronic pain leading to pain chronification. A multidisciplinary approach is usually needed.

ICD-10 offers many codes that are specific to the location or type of pain. These are generally found in the section related to the body system or anatomical part, such as abdomen pain (R10.xxx), headache syndromes (G44.xxx), and spine pain (M54.xx).

Under G89 (pain, not elsewhere classified), there are 12 codes for acute and chronic pain related to trauma, post-thoracotomy, other postprocedural, and neoplasms, along with pain not elsewhere classified, and chronic pain syndrome (G89.4), defined as associated with significant psychosocial dysfunction.

G89.2, chronic pain, not elsewhere classified, the broadest billable code below G89 excludes all the localized pain types, as well as the complex regional pain syndromes (G56.4 and G57.7) and reflex sympathetic dystrophy (G90/5).

See ICD-10 Coding for Pain Not Elsewhere Classified (icd10data.com) for more details.