Chronic Lyme Disease or Somatic Symptom Disorder in Children?
Seven children were reclassified with somatic symptom disorder.
Persistent Lyme symptoms remain controversial in children.
School attendance and daily functioning were significantly impaired.
Peri and colleagues reviewed the medical records of children admitted to a hospital in Italy between January 2016 and December 2018. They identified 26 children who had a diagnosis of Lyme disease. Seven fit the criteria for chronic Lyme disease. However, the authors disputed these findings and instead suspected the children suffered from somatic symptom disorder. [1]
How the Authors Defined Somatic Symptom Disorder
According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), somatic symptom disorder involves:
“the presence of nonspecific discomforting somatic symptoms (mostly head, abdominal, back, and muscle pains) and excessive thoughts on a possible disease, that seriously undermine children’s daily life causing in severe cases school absenteeism, loss of interests and activities, isolation from peer, abandonment of sports activities, for more than 6 months.” [1]
The DSM-V criteria also include repeated requests for medical help, excessive attention focused on symptoms, and avoidance of physical activity. [1]
Children Lived in Lyme-Endemic Areas
All 7 children lived in areas endemic for Lyme disease.
Two children had a positive IgM Western blot test, although none had a positive IgG Western blot. Additional diagnostic testing was reportedly negative. [1]
All of the children remained ill despite multiple courses of antibiotics.
For 5 of the 7 children, symptoms lasted longer than 6 months and “strongly impaired their school attendance,” writes Peri, a child neuropsychiatrist. [1]
Symptoms Included Fatigue, Pain, and Neurologic Complaints
The children’s symptoms included:
- Headaches
- Low-grade fevers
- Arthralgias without active inflammation
- Asthenia (abnormal weakness or fatigue)
“One patient reported difficulty in walking so as to arrive at the use of a wheelchair and one visual disturbance,” wrote Peri. [1]
Psychosocial Factors Were Identified
Four of the children reportedly had psychosocial stressors including:
- High academic or family demands
- Perfectionism traits
- The sudden death of a parent
- A history of bullying
- Gender dysphoria
One child reportedly dropped out of school. [1]
Most Children Were Reclassified With Psychiatric Diagnoses
After reevaluation by a pediatrician and child neuropsychiatrist, 6 of the 7 children had their diagnosis changed from chronic Lyme disease to a psychopathological disorder, primarily somatic symptom disorder. [1]
Peri and colleagues ruled out Lyme disease because of:
- Nonspecific symptoms
- Negative IgG Western blot testing
- Assumption that positive IgM tests were false positives
The authors did not report whether the children improved after being reclassified and treated for somatic symptom disorder.
The remaining 19 children admitted with Lyme disease were not reported to have somatic symptom disorder. [1]
Clinical Perspective
The authors concluded that “like adults, children and adolescents labeled as affected by [chronic Lyme disease] may have a psychopathological disorder.” [1]
At the same time, persistent Lyme symptoms in children remain controversial and difficult to evaluate, particularly when symptoms include fatigue, pain, cognitive complaints, and impaired school functioning.
Unfortunately, too many patients with persistent symptoms of Lyme disease are dismissed and labeled as having aches and pains caused not by an infectious pathogen but by a psychiatric condition.
To learn more, see Yale study finds children don’t have Lyme disease.
Frequently Asked Questions
Can Lyme disease be misdiagnosed as a psychiatric disorder?
Yes. Persistent symptoms such as fatigue, pain, and cognitive problems may sometimes be interpreted as psychiatric or somatic symptom disorders. [1]
What symptoms did the children experience?
The children reported headaches, low-grade fevers, arthralgias, weakness, fatigue, mobility problems, and school impairment. [1]
Did all children improve after psychiatric reclassification?
No outcome data were provided regarding whether symptoms improved after the diagnoses were changed. [1]
Related Articles:
Don’t confuse somatic symptoms with depression in early Lyme disease
Turning a blind eye on Lyme disease
Study finds misdiagnosis and delayed diagnosis common for Lyme disease patients
Doctors agree Lyme disease patients at-risk for suicide are under-recognized group
References:
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- Peri F, et al. Somatic symptom disorder should be suspected in children with alleged chronic Lyme disease. Eur J Pediatr. 2019;178(8):1297-1300.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
So sad. At age 9, after having fatigue, tremendous pain and other obvious physical symptoms (rashes, hives, joint swelling, high ANA’s)- after being misdiagnosed with systemic lupus, the children’s hospital diagnosed my dd with somatoform d/o, told us to ignore her symptoms, see a psychiatrist and put her on Zoloft! UNBELIEVABLE!! She actually had Lyme with multiple coinfections, which caused her PANS. Four years later, after 3 years of tx, she is a beautiful, smart, strong, motivated girl in the honor society. So grateful for the Lyme and PANS communities!
Thanks for sharing an all too common story.
Thank you for posting the content of the article. I saw the abstract on PubMed, and, cringed. Children are powerless to fight back subjective psychiatric diagnoses such as SSD, and, I fear that their parents will be pathologized for doing so in their continued efforts to find appropriate/effective care for their children. SSD label and treatment is crazy-making in and of itself when the guiding clinical assumption is that you only think you have Lyme disease. You are to be re-educated about that through cognitive behavioral therapy. You wouldn’t be sick at all if you could let go of the idea that you are sick with Lyme (despite medical care providers treating for Lyme). People in a helping profession invalidating serious illness and struggle that, with almost any other disease, would be met with compassion and validation, is a special kind of cruelty/rejection reserved for Lyme patients. I believe it to be psychologically harmful and a contributing factor to the development of an overlay of psychiatric/psychological issues in some Lyme patients, and, not to be underestimated as a factor contributing to suicide in Lyme patients (as addressed by Dr. Bransfield?). Outright rejection, and, sometimes, ridicule, by the medical establishment, when one is really really ill, is crushing. You aren’t worth basic human regard for your suffering–is what it can feel like when you are already on your knees from the illness trying to dig your way through the process of trying to get help. Countless tears have been shed in medical facility parking lots after humiliating appointments with doctors who think they have Lyme all figured out even though science hasn’t.
Thanks for sharing your story.