It was the spring of 2006 and my son and I had travelled to visit my parents for the weekend leaving my daughter and my husband together back home. Only a day after arriving at our destination I received a call from my husband telling me that my daughter had woken up that morning with a temperature of 104 and was covered in a red rash. He had taken her to A&E where she had been diagnosed with Scarlet Fever.
Life changed completely for our family on that day. My daughter developed anxiety, OCD and irrational fears, intense rage and extreme sensory processing difficulties. There were some very long and dark days for our family and it would be many years, having left a trail of specialists and rabbit holes behind us, before our daughter would be diagnosed with PANDAS by a doctor in the USA.
PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. Since going through that time personally, we have seen hundreds of children coming to our Brainstorm Health® clinic wrongly diagnosed with behavioural disorders where, in fact, these children have an immune system issue which is affecting their brain.
It is now understood that streptococcal infection is only one of the infections that can cause these symptoms and the wider umbrella term, PANS is more commonly being used: Paediatric Acute-onset Neuropsychiatric Syndrome, covering a number of other potential pathogenic triggers. If you are looking to find out more about PANS and PANDAS, have a look at www.panspandasuk.org – it is the best resource to investigate more about it.
One of the key features of these conditions is Obsessive Compulsive Disorders (OCD) – characterised by repetitive thoughts and behaviours, impulses or obsessions or compulsions – with the tendency to perform acts in a habitual or stereotyped manner. There is little control on the urge to perform a specific behaviour, with significant reduction in the ability to inhibit those thoughts or behaviours.
Typically, OCD behaviours are first observed in late childhood or early adolescence. In children with autism, the onset tends to be a lot earlier, manifesting before the age of 3. Drugs used to reduce these symptoms work only in 40% of cases. The remaining 60% don’t respond and are left to cope with this debilitating symptom.
Many children with autism don’t tend to get a separate diagnosis of OCD as these compulsions are seen as part of “autism”. Many professionals assume that OCD is mainly about repetitive hand-washing but some children suffer from extreme OCD and anxiety around perceived contamination, and around every day common activities such as eating and drinking and in some extreme cases fears around even swallowing their own saliva. Table 1 outlines the most common obsessions and compulsions that have been observed.
With children who don’t have an autism diagnosis, a sudden change in personality can be much easier to identify. A child with autism on the other hand may also develop OCD fairly abruptly but it can be dismissed as part of the “condition”.
What is of the utmost importance to convey is that when we start digging deeper into the health of these children, we find that there are some key similarities in the biochemistry of both groups of children regardless of whether or not there is an autism diagnosis.
Both groups of children have dysregulated immune systems and tend to have signs of underlying infections, including streptococcal infection, CMV, EBV, HHV-6, and Coxsackie. The herpes group of viruses tend to be key players which includes chicken pox (varicella zoster) and shingles. All of these viruses are neurotropic and can affect brain function.
There are also significant markers suggestive of a compromised immune system, with raised CD3, lowered CD57 as well as raised inflammatory markers. Often, the same children will be prone to UTIs (urinary tract infections), excessive urination, conjunctivitis, mouth ulcers, sleep issues and gut problems. One key point to make is that over the years through clinical practice we have found that the onset of symptoms like severe OCD doesn’t need to come on abruptly.
There are children who drift into this state over a period of a few months. The more common triggers tend to be illnesses like Scarlet Fever or chickenpox but there are other common triggers such as food poisoning, or an intense course of antibiotics, especially if administered intravenously. Sometimes the trigger can be emotional trauma, such as a divorce or the death of a loved one.
A study in March 2019, published in the Journal of Child and Adolescent Psychopharmacology, highlighted the potential connection between low IgA levels in serum and OCD, which mirrors what we see in clinical practice. IgA is the first line of defence against harmful microbes, and crucial for maintaining immune tolerance. IgA is found primarily in the gut, urogenital areas, saliva, tears and the respiratory system.
When considering the health of the gut it is important to point out that more than half the children we see in our clinics with OCD, were born via C-section and had at least one course of antibiotics in the first year of life, often immediately after birth. Given over 70% of our immune system is in the gut it is not surprising that poor “seeding” with bacteria due to C-section and the loss of microbial balance due to antibiotics can predispose children to immune disfunction.
Here are some things to consider if your child has OCD which is debilitating:
Conditions like OCD are often symptoms of disturbed underlying biochemistry and should be investigated using thorough case taking and laboratory analysis before administering long term psychiatric medication. Children on the autism spectrum are particularly vulnerable as it may be very easy to lump all of their symptoms under the ASD diagnosis.
My daughter is now 17 years old and a picture of health and is thriving. I am acutely aware that had we not approached things with steely determination the outcome could have been very different.
Interested in finding out whether our approach would work for your child? Please do get in contact to arrange a private, no-obligation conversation with me.
For a full description of OCD, please see the International OCD Foundation website (www.iocdf.org) and the Y-BOCS Symptom Checklist, which includes a comprehensive list of 67 types of obsessions and compulsions. Here is a short list of the more common ones observed:
Natural Compounds for Pathogens
Viruses responds well to;
Olive leaf extract, cat’s claw, garlic, astragalus root, ginger, elderberry, echinacea, licorice root
Bacteria respond well to;
Garlic, berberine, plant tannins, oregano, grapeseed extract
Yeast respond well to;
Grapefruit seed extract, oregano oil, caprylic acid, garlic, pau d’arco
Parasites respond well to;
Black walnut, wormwood, garlic, cloves, thyme, fennel, cayenne, ginger, gentian, mimosa pudica