Written by Stella Chadwick for Autumn 2020 edition of the Autism Eye Magazine
It is little wonder that families touched by autism are turning their attention to the medical conditions of PANDAS and PANS. The key symptoms associated with these diseases are extreme obsessive-compulsive disorder (OCD) and tics, as well as separation anxiety, restrictive eating and urinary frequency; the same symptoms are often reported in individuals with autism. There are many other symptoms, too: see table 1 for more information. PANDAS is short for Paediatric Autoimmune Neuropsychiatric Disorder Associated with streptococcal infection, while PANS is short for Paediatric Acute-onset Neuropsychiatric Syndrome. Both are auto-immune conditions that are driven by underlying infections or other immune triggers. In the case of PANDAS, the symptoms are triggered by group A streptococcus bacteria. With PANS, meanwhile, the triggers can vary and include viral infections, Lyme disease, celiac disease or extreme sensitivity to gluten or other foods, exposure to mould, and head injuries. There is a pattern to these conditions and symptoms can ebb and flow. A child can improve for a period of time, only to be thrown back into the thick of the symptoms by something as innocuous as a loose tooth. While the majority of the focus has been on children, we have seen a number of young adults with similar symptoms. We believe they were undiagnosed as children and were left untreated.
Far too often, medical professionals misdiagnose children with PANDAS and PANS because they are not familiar with the conditions. In some cases, they tell parents that the child is acting out, or that the parents need to improve their parenting skills. It is imperative to understand that many of these children may be struggling with an immune-mediated condition and may need medical support. We know that streptococcal group A infection can trigger rheumatic fever in some children, causing inflammation in the heart, joints, skin and the central nervous system. Often, the child has a history of repeated ear, nose and throat issues, as well as strep infection; in some cases there is a history of scarlet fever. In classic PANDAS cases, the onset of symptoms can be abrupt, and parents report a major change in their child virtually overnight. However, in our clinical practice, we have found that the onset is not always abrupt. In some cases the condition can start with minor issues such as increased anxiety and sleep disturbance and gradually drift into other major symptoms such as OCD, tics and restrictive eating.
In 2010, a group of medical doctors and researchers published a set of guidelines and criteria for PANS. What separates it from PANDAS in that the trigger is not seen as the strep infection, but other infections. These include Epstein-Barr virus, cytomegalovirus, herpes simplex virus, human herpesvirus 6, mycoplasma bacteria, coxsackievirus and Lyme disease. PANS is also more of a clinical diagnosis. In our clinics we have found a number of parameters that are common among children with the condition and their families. Often, we find that either one or both parents struggled with repeated ear, nose and throat infections as children, or had glandular fever as youngsters, or had shingles, sometimes repeatedly as adults. We also regularly find autoimmune conditions such as Hashimoto’s disease or chronic fatigue syndrome, especially in the mother’s health history. Often, too, we find multiple people in the family with allergies, asthma and eczema. Other common clinical findings are high rates of caesarean or induced births, and antibiotics given to the mum or baby during or post labour or in the first year of life. More recently, we have become aware of the impact of mould in the home as a persistent trigger, especially in those children who don’t respond well to medical or biomedical treatments.
PANS and PANDAS are seen as conditions that are best diagnosed based on the clinical picture. With suspected PANDAS it is important to measure strep antibodies, such as anti-DNase B and anti-streptolysin O. This can be a problem since antibodies can take a very long time to go up and down and are not always reliable on their own as a confirmation of PANDAS. Sometimes, doctors will order swabs for throat, nose and anus in order to assess strep as the trigger. Those versed in these conditions will also look at a number of markers, including full thyroid panel, IgG subclasses, ANA screen, mannose-binding lectin, viral IgG and IgM titres, lymphocyte typing, and detailed viral serology. There is a specialist test called the Cunningham Panel, devised by Dr Madeleine Cunningham, an internationally recognised researcher in neuropsychiatric disorders and other infection-induced autoimmune disorders. The Panel measures the level of circulating antibodies directed against antigens concentrated in the brain, and measures the ability of these and other autoantibodies to increase the activity of an enzyme (CaMKII) that upregulates neurotransmitters in the brain. There are ongoing discussions about the validity of this test.
Medical treatment options are limited in the UK. Where they are available they tend to be based on the severity of symptoms and focus on anti-inflammatories and steroids (contra-indicated in those with Lyme disease). Antibiotics, antifungals, antihistamines and selective serotonin reuptake inhibitors (SSRIs) are also used. In some cases of PANDAS, removing tonsils and adenoids has been helpful. In some extreme cases, patients have benefited from intravenous immunoglobulin (IVIG), which is where immunoglobulins (primarily IgG) are administered via a cannula in a vein. This has been especially helpful for those children where the symptoms were causing significant impairments in daily functioning. In extreme cases it is also important to consider MRI and EEG scans to rule out other underlying issues.
For our PANS and PANDAS patients, our work focuses on finding all the infectious and non-infectious triggers through clinical history and laboratory testing. We consider and test for a multitude of infectious triggers, histamine issues, kryptopyrroluria (KPU), nutrient deficiencies, coeliac disease and other major food intolerances, mould and chemical and toxic load, methylation and detoxification issues. We pay close attention to the integrity of the gut ecosystem, which has a significant impact on humoral immunity – this is the adaptive part of the immune system that can so often go wrong in the early stages of life. Our functional, medicine-based protocol uses a variety of techniques, including micro-immunotherapy, with the aim of reprogramming and resetting the immune system and bringing the body back into balance. A lot needs to be done to create better awareness of PANS and PANDAS and for children to receive treatment quickly. If you are a family struggling and need support please reach out to your community. PANS PANDAS UK (www.panspandasuk.org) is the best UK-based source of support. PANDAS Physicians Network (www. pandasppn.org), meanwhile, offers helpful information about treatment options and diagnostic guidelines, as well as the latest research.
Table 1: Common symptoms of PANDAS:
|Severe separation anxiety|
|Motoric hyperactivity, abnormal movements, and a sense of restlessness|
|Sensory abnormalities (sensitivity to light or sounds), distortions of visual perceptions; and, occasionally, visual or auditory hallucinations|
|Difficulties concentrating, and loss of academic abilities, particularly in maths and visual-spatial areas|
|Increased urinary frequency, or sense of urgency and/or a new onset of bed-wetting|
|Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide|
|Developmental regression, including temper tantrums, “baby talk” and handwriting deterioration|
|Parents can usually remember the day their child’s behaviour changed. PANS and PANDAS is characterized by an abrupt onset of obsessive-compulsive disorders and/or tics|