PANS (paediatric acute-onset neuropsychiatric syndrome) can be a debilitating condition. 

With symptoms such as obsessive-compulsive disorder (OCD), tics, separation anxiety and aggression, this condition has a dramatic impact on the whole family. Distressed parents are often deeply concerned about their child and are desperate for help, yet with poor recognition in Australia, they’re often not getting the support they need.

PANS was first discovered in the late 1980’s when it was recognised that a subset of children with OCD had onset suddenly after an infection. Even then, infections such as Varicella and Mycoplasma were recognised as potential triggers, but researchers decided to focus on those that were triggered by Group A Streptococcal (GAS) infections to allow them to draw on the understanding of Sydenham chorea; the neurological component of rheumatic fever.¹

The criteria for PANDAS (paediatric autoimmune neuropsychiatric disorder associated with Streptococcus) was never designed for clinical diagnosis but to exclude children with symptoms triggered by other infections for research purposes. What has ensued is a strong clinical focus on testing for Streptococcal serology in children unnecessarily and when negative, inadvertently resulting in missed diagnoses of PANS.

This case below highlights some of the practical limitations with the PANS diagnostic criteria and how a medical history timeline can be key in helping these kids.

Initial Appointment

Presenting Symptoms:

A 10-year-old boy attended the clinic with his parents. He had an extremely severe tic disorder for the past 3 years comprising of vocal tics, coprolalia (involuntary swearing) and forceful motor tics.

The tics were so severe, he was unable to ride a bike, write with a pen or eat food with a fork, often stabbing himself. He found it difficult to hold anything in his hands and missed a whole term of school.

The onset of tics was sudden, and initially seasonal, being worse during the winter months. Symptoms would last several months and then disappear completely.

He experienced severe constipation; opening bowels every 2 to 10 days and had a history of migraines that were improved with riboflavin.

Medication & Testing:

His paediatrician had prescribed:

Fluoxetine (SSRI): 10mg/day

Topiramate (anti-convulsant): 50mg/day

Clonidine (anti-hypertensive): 100mcg/day

Melatonin: 4mg given at bedtime

The paediatrician had recommended re-trying anti-psychotic medication risperidone, but they were not keen as it had been trialled previously with no benefit. 

Previous investigations:

• Streptococcal serology: negative
• Vitamin D: 36 (75-250)
• EEG, MRI and lumbar punctures NAD

The difficulty was that he didn’t meet the criteria for PANS as OCD didn’t meet the DSM-IV criteria and there was no evidence of a GAS for PANDAS.

The remitting/relapsing clinical course of the tics also made the Tourette’s diagnosis questionable as it has waxing and waning of symptoms, but not complete remission of symptoms for periods of time.

Initial prescription:

• Reducing neuro-inflammation with Curcumin (90mg as phospholipid complex twice daily) and N-acetylcysteine (NAC: 2g daily)
• Magnesium (as citrate and orotate): 80mg three times daily
• Gluten-free diet
• Partially hydrolysed guar gum (PHGG): 8g daily

2-Week Follow-Up

At follow-up, constipation had responded well to treatment with bowel movements every 2-3 days. Slight improvements in tics were noted but were very limited, so he was advised to take ibuprofen (dose as per label) for 3 to 5 days. Ibuprofen is a clinically useful tool to reduce PANS symptoms to determine clinical focus, but long-term use is not recommended due to detrimental impact on the gastrointestinal tract.

With ibuprofen he experienced 60% reduction in tics. After years of severe tics, the parents were astonished to see such improvement over a few days.

As such the treatment was changed to focus on gut dysbiosis and reducing inflammation:

• Anti-microbial Herb Mix: containing Commiphora myrrha, Juniperus communis, and Glycyrrhiza glabra (5ml twice daily 2 days/week only)
• Probiotic: containing L rhamnosus GG 10 bill CFU
• Continue: PHGG, magnesium and gluten-free diet

6-Week Follow-Up

After implementing anti-microbial herbs and probiotics there was an 80% reduction.

The patient had no vocal tics and a significant reduction in motor tics both in severity and frequency, with tics only being present at the end of the day and when he was fatigued.

Over the following 12 months, he continued to improve and currently has had no recurrence of the tic disorder. Over that period, he had gradually ceased fluoxetine, riboflavin and clonidine under guidance of his paediatrician.

His naturopathic treatment was reduced to:

• 9-strain probiotic to strengthen barrier function; 1 sachet daily
• Magnesium: 80mg once daily
• NAC: 1g twice daily
• Omega-3: containing 500mg EPA and 200mg DHA

Case Summary

Initially, his parents were hesitant to taper off the anti-microbial herbs after all the symptoms had resolved. Whilst this was understandable, as naturopaths our treatments are designed to correct imbalances and restore homeostasis so that long-term anti-microbial therapy should not be required to maintain improvement. This case is useful for highlighting the key role of the gut microbiome for regulating immune responses in neuropsychiatric presentations in children to achieve long-term improvement.

Key Points

• Not all kids with tics or OCD have PANS
• PANS is triggered by numerous different infections not just Streptococcus
• Positive Strep serology doesn’t confirm PANDAS; negative doesn’t exclude
• The PANS diagnostic criteria has limitations so careful history, onset and timeline of symptoms are critical in determining the underlying drivers. 

References

1. Chang K, et al. (2015). Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference. J Child Adol Psychopharm Vol 25:1. Pp. 3-13