PANS and PANDAS are anagrams for a psychiatric illness that is caused by an infection like strep bacteria. PANS stands for Paediatric Acute-onset Neuropsychiatric Syndrome and PANDAS stands for Paediatric Acute Neuropsychiatric Disorder Associated with Strep. An inappropriate immune response can be triggered by strep, viruses or even mould and the antibodies created attack the brain instead of the pathogen. The inflammation then causes neuropsychiatric symptoms like severe anxiety, OCD and tics.
The most important thing to remember is that if your child's behaviour seems to change drastically, especially after an illness, you should consider investigating whether or not it is PANS/PANDAS and get treatment as soon as possible. Below is a checklist of the most common symptoms for your reference. If your child has had many of these appear suddenly then please contact your GP and bring along my article that I've posted in the Brainstorm Health Blog here for reference. You can also direct them to the excellent resource pandasppn.org which is a physician-led organisation raising awareness. Hopefully your doctor will do the appropriate checks and refer you to a specialist or at the very least a paediatrician. Early treatment tends to get better results so the sooner you can see someone the better.
Common symptoms of PANDAS:
- OCD (obsessive-compulsive disorders)
- Motor or verbal tics
- Severe separation anxiety
- Generalised anxiety
- Physical 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 most often characterised by an abrupt onset of OCD and/or tics though other symptoms, if severe, merit investigation. Getting the diagnosis can be difficult but don't give up! Keep trying to find a paediatrician who is up to date with the research. More and more awareness is needed and can be built by parents taking this information to doctors.
Diagnosis
Unfortunately there is no one lab test that can diagnose PANS or PANDAS and often doctors make a 'clinical diagnosis' which simply means they will take symptoms into consideration along with some basic lab tests.
If strep infection is suspected (PANDAS) it is important to measure strep antibodies, such as anti-DNase B and Anti-Streptolysin O (ASOT). These tests aren't always used as confirmation since antibodies can take a long time to go up and down. It's still worth checking so please do push for these simple blood tests it if you suspect your child's behaviour changed soon after a sore throat. Sometimes, doctors will also order swabs for throat, nose and anus in order to as strep can live in all these areas. Specialists may look at many other markers and you can read more about those in the blog I linked above if you want to discuss those with them.
Treatment options
This is a highly-complex disorder and depending on the original trigger, the severity of the illness, and other underlying health conditions so treatment options vary. Unfortunately comprehensive treatment is still very limited in the UK. Doctors generally prescribe medications to help combat the symptoms.
Medications can include:
- Antibiotics
- Antifungals
- Antivirals
- Antihistamines
- Steroids or NSAIDs
- Anti-psychotics for extreme flares
- SSRIs (can sometimes make symptoms worse - this is usually not the first port of call)
- IVIG - an immune therapy that adjusts the child's immune system with immunoglobulin for extreme cases that don't respond to other treatment
Natural support
For our PANS and PANDAS patients, we assess a wider range of triggers that can include histamine issues, kryptopyrroluria (KPU), nutrient deficiencies, coeliac disease, food intolerances, mould, toxic load, methylation and detoxification issues. We pay close attention to the integrity of the gut ecosystem, which has a significant impact on the immune system that can so often go wrong in the early stages of life. We also offer support for the gut if the child needs to have long-term antibiotics.
Our functional medicine-based protocol uses a variety of techniques, including Micro-immunotherapy, an exciting new tool that aims to reprogram and reset the immune system. Please follow this link and have a read as it is a promising new therapy we have been getting great results with.
We also offer dietary advice and some natural antibiotic and antiviral support when medication is not available.
If you'd like to know more, these articles will provide you with good general information and some of the treatment options in more detail but you can get much more detailed information from organisations such as panspandasuk.org and pandasppn.org.
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