For January's Question of the Month, Dr. Rita Agarwal teamed up with a parent of and advocate for children with hereditary pancreatitis and chronic or recurrent pain, Beth Larson-Steckler https://www.childhoodpancreatitis.org/
This question is based on composite patient experience and is not meant as a critique of healthcare professionals in pediatric pain management, but a reflection of lived experience of patients and their families. Many families with children with chronic pain live in areas with limited access to health care and attempting to get appropriate care for their children can be challenging. These families often rely on their PCP and have minimal access to specialists.
Question: My 13-year-old daughter has acute and chronic pain related to hereditary pancreatitis that was well controlled on a stable dose of opioids. Her pediatrician switched her medications to gabapentin because he was concerned about the risk of opioids. Since she started taking gabapentin, she is short with us, crabby and depressed. She is crying all the time and her pain is worse. I am very concerned, I‘d like to have her switched back but her doctor keeps saying it’s better than opioids. What should I do first?
Gabapentin is a medication that is commonly used for the treatment of chronic and acute pain. It’s exact mechanism of action in relieving pain is not known, although gabapentin and pregabalin are hypothesized to work via modulation of voltage-gated calcium channels1. It may be effective in some patients and is often used for neuropathic pain but may take up to 4 weeks for effect. It has some side effects, including mood dysregulation, sedation, and irritability that require close monitoring when initially prescribed. 2,3. If a child is not getting relief from gabapentin or having side effects that are difficult to manage, parents should be encouraged to talk to their physician about changing medications or adjusting the dose. There are other medications that may work better with less side effects. However, many parents navigating these changes often worry that they or their child will get labeled as difficult, doctor shopping, or drug seeking. This is particularly true for families that live in rural areas or locations with limited access to specialist healthcare. In a survey by the US Pain Foundation less than 50% of patients are cared for by a pain specialist and almost 40% of families have tried unsuccessfully to see a pain specialist.4
The use of long-term opioids in patients with chronic pain is controversial.5,6,7,8 Previously patients including children with chronic non-cancer pain were sometimes prescribed opioids and were getting relief from stable doses of opioids. However, with the increasing evidence regarding the lack of long-term efficacy, and potential harm from opioid use and with the 2016 CDC Guideline regarding prescribing opioids for chronic pain many practitioners are choosing to, or being forced by institutional policies to summarily stop prescribing opioids, in some cases without adequate appropriate alternative multimodal therapy. Families should first discuss these options with their health professional. Multimodal and multidisciplinary techniques to pain management in children have been shown to be the most effective approach.
If a patient’s pain is chronic and complex in nature, the family should ask for a referral to a multidisciplinary pediatric chronic pain program. Since many programs are offering telehealth visits this may be more possible or practical now for families with children living in remote areas. Most specialists in pediatric pain will manage patients with a multidisciplinary approach that includes pain psychology, physical therapy, occupational therapy, and may include psychiatry, and/or interventional procedures such as trials of nerve blocks. While in-person visits are still ideal, a lot of care including PT/OT/complementary therapy, biofeedback, mindfulness, relaxation therapy and hypnosis can be offered in a virtual setting.
Pediatric Chronic pain specialists and clinics can be found here https://pedspainmedicine.org/patients-and-families-useful-links/ or http://childpain.org/wp-content/uploads/2020/03/PedPainClinicList_2020-v2.pdf
1. Mathew, E., Kim, E. & Goldschneider, K. R. Pharmacological Treatment of Chronic Non-Cancer Pain in Pediatric Patients. Pediatric Drugs 16, 457–471 (2014).
2. Li G, Li P. (2020, Summer) The use of membrane stabilizers in acute and chronic pain. SPPM Newsletter. Retrieved from https://pedspainmedicine.org/wp- content/uploads/newsletters/2020/summer/nonopioid/Membrane%20Stabilizers%20.html
3. Trends in Gabapentin and Pregabalin Prescribing in a Tertiary Pediatric Medical Center. Donado C, Nedeljkovic K, Wangnamthip S, Solodiuk JC, Bourgeois FT, Berde CB.Hosp Pediatr. 2021 Aug;11(8):909-914. doi: 10.1542/hpeds.2020-003582. Epub 2021 Jul 13.PMID: 34257145
4. US Pain Foundation. 2021 Pediatric Pain Survey, US Pain Foundation, 2021, https://uspainfoundation.org/wp-content/uploads/2021/06/2021-Pediatric-Pain-Survey-SMALL.pdf.
5. Dowell D, Haegerich TM, Chou R. CDC guideline for prescribing opioids for chronic pain—United States, 2016 JAMA. doi:10.1001/jama.2016.1464.
6. The Potential Impact on Children of the CDC Guideline for Prescribing Opioids for Chronic Pain: Above All, Do No Harm. Schechter NL, et al. JAMA Pediatr. 2016. PMID: 26977702
7. European* clinical practice recommendations on opioids for chronic noncancer pain - Part 1: Role of opioids in the management of chronic noncancer pain. Häuser W, Morlion B, Vowles KE, Bannister K, Buchser E, Casale R, Chenot JF, Chumbley G, Drewes AM, Dom G, Jutila L, O'Brien T, Pogatzki-Zahn E, Rakusa M, Suarez-Serrano C, Tölle T, Krčevski Škvarč N. Eur J Pain. 2021 May;25(5):949-968. doi: 10.1002/ejp.1736. Epub 2021 Mar 2.PMID: 33655607
8. Guidelines on the management of chronic pain in children. Geneva: World Health Organization; 2020. Licence: CC BY-NC-SA 3.0 IGO.