If your child's symptoms seem very bizarre, you may have Googled around and found that they fit with criteria for the following:
- BGE: ‘inflammatory’ or ‘post-infectious’ Basal Ganglia Encephalitis. BGE may be described as a form of ‘Autoimmune Encephalitis (AE)’. Encephalitis refers to inflammation of the brain.
- PANS: ‘Pediatric Acute-onset Neuropsychiatric Syndrome’. May be considered a subset of BGE.
- PANDAS: ‘Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections’. A subset of PANS. There must be a strep (streptococcal) infection.
Parents usually come to these because they feel their child's eating disorder is no ordinary eating disorder, or because it seems extra long and hard to treat.
It may seem bizarre and still be an eating disorder
On this other page I list the more bizarre signs that are common enough in anorexia, atypical anorexia and ARFID. If that's what your child is displaying, then there's no reason to think your child has something other than an eating disorder. Focus on eating disorder treatment without delay.
What if your child displays other signs and symptoms?
Take your list of symptoms to your eating disorder specialists. If they tell you these are still 'normal' for an eating disorder, then it means they've seen plenty of those, and that the best treatment is eating disorder treatment. Anything else would only prolong your child's misery.
Often, the bizarre or extreme behaviours parents are noting are also indicators of anxiety, OCD, autism, depression, ADHD. These are very commonly associated with eating disorders and your clinicians should advise on how these are to be addressed. Bear in mind that many symptoms fade away once a person is renourished, and that is why the general wisdom is to start with nutrition before, say, diagnosing and treating for OCD.
We are increasingly hearing of young people (usually without an eating disorder) afflicted with tics or seizures that look like Tourette's syndrome. If this is affecting your child, flag this up so that specialists can assess and treat. While you're researching this look up 'functional neurological syndrome' (FND).
It is rare (or very rare) that eating disorder specialists come across symptoms that indicate the possibility of a neurological disorder or that lead them to the PANS or PANDAS route. If your child's symptoms raise red flags, your team will probably refer you to a neurologist, where this can be expertly assessed.
Nourish anyway
If your eating disorder clinicians are concerned about you going down the PANS/PANDAS route, it's probably because they don't want it to detract from the work of regular meals and weight gain.
Whatever the initial cause of your child's weight loss, poor appetite and behaviours, they need help to eat and regain weight, and this will likely produce huge improvements.
As an illustration, here's an overview of a 14-year old's recovery from anorexia nervosa:
- The parents recall an (undiagnosed) tick bite age 12 — this boy had an outdoor life in a tick-infested area.
- Family became vegetarian. Some gradual weight loss. Suspect low zinc is hindering appetite and might be producing signs that overlap those of anorexia nervosa.
- Reduced appetite, gradual weight loss over the next 2 years. Increased signs of anorexia nervosa.
- Age 13: anorexia nervosa is diagnosed: they think triggered by weight loss combined with a genetic predisposition. "Once he entered energy deficit, anxiety, OCD and ED thoughts kicked in".
- Active work over many months with an FBT therapist on refeeding and fading eating-disorder behaviours.
- At the same time, reintroducing meat and supplementing zinc: one week of zinc coincides with the first "I'm hungry" in 2 years. Still, zinc was very slow to rise.
- By age 14, he was generously weight-restored. Forty eating disorder behaviours had gone. But still not hungry enough for his very high calorie needs (growth spurts, high metabolism).
- Antibiotic for acne coincides with a final breakthrough: no more eating disorder signs whatsoever. Continued growth, appetite now matches needs, and thriving.
- Testing indicates possible infection (but good immune response) related to Lyme and Borrelia Miyamotoi infections (this is how the parents linked back to the possibility of a tick bite age 12, and how that would have contributed to zinc depletion). The antibiotic would have helped but dosing would not have been sufficient to eradicate the infection.
- In retrospect, the parents note the importance of refeeding, while wishing there'd been more help with micronutrients — zinc especially — and that they'd made the link with the tick infection.
I'm giving you this example even though Lyme disease, Borrelia miyamotoi, and other tick‑borne infections don't fall under the PANS or PANDAS umbrella, to my knowledge (and neither does zinc deficiency).
Differing views about these conditions
Clinicians don't all agree with each other about the existence of PANS or PANDAS. And even so there is dispute about the cause, the biological mechanisms. Where there is general agreement is that more high quality research is needed.
PANS and PANDAS are diagnoses 'of exclusion'. That means you only go down that route, and consider the various medications (with side-effects) if there is no other diagnosable condition that fits. That's why the first task is to check if your child's symptoms fit with an eating disorder, anxiety, OCD, ADHD or autism.
Who to believe?
As a parent it is hard to assess the quality of what we find on the internet. Whose expertise should you trust when there is disagreement, when it's clear that more research is needed, and when getting the wrong treatment might be a waste of time or harmful?
Consider that any delay to eating disorder treatment is harmful. So please get the nutrition started even if you are looking into other avenues.
There are neurologists in private practice who specialise in PANS or PANDAS, using antibiotics, non-steroidal anti-inflammatory drugs, steroids, and so on. And on the other hand there are neurologists (in the UK they tend to be in the National Health Service) who oppose this, saying that patients sent to them for PANS/PANDAS assessment have diagnosable conditions: anxiety, trauma, OCD, autism and so on. Each treatable through the best current practices.
You might like to check if your country's professional association of neurologists has published on this topic. Have they reviewed the science? In the UK, the answer is yes, with findings in this report.
If you are still reading this it's probably because you're in a horrible and extreme situation. I wish you access to expert impartial advice, and for solutions as soon as possible.
Thank you
I am super grateful to a fellow parent for educating me about this issue, to the extent of paying for me to get access to a PANS conference recording — all so that more parents get the information they need.
Thank you also to the specialists in eating disorders, paediatrics and neurology who suggested some changes to this page. My words are my own though, and I am no expert, so please trust clinical experts more than you trust this page.