PANS/ PANDAS is a little known, but treatable, medical condition that looks like a psychiatric disorder. PANS/ PANDAS is said to affect an estimated 1 in every 200 children. This means that PANS/ PANDAS is not rare however, sadly for those affected it is rarely diagnosed.
Children with PANS/ PANDAS experience a sudden and dramatic change in their personality, independence and ability to participate in typical childhood activities. Parents will often describe this change as having happened overnight. The main symptoms that are described include sudden-onset anxiety, OCD, irritability, developmental regression (e.g.: baby talk), sleep disturbance and school refusal or deterioration in school performance.
Children might also experience a deterioration in their motor coordination, for example their handwriting might suddenly become very messy and hard to read; or they might find hopping, skipping or balancing suddenly tricky. Some children become more sensitive to things like sounds; bright lights, the feel of their clothes against their skin; the taste, smell or texture of foods. Some children will even restrict what they are eating due to sensory challenges or issues associated with OCD. This can become dangerous if they start losing excessive weight. Some children who were previously toilet trained will suddenly start wetting their bed or needing to use the toilet much more frequently than usual.
PANS/PANDAS symptoms can range from mild to severe and life threatening.
The image below explains the criteria PANS/ PANDAS aware doctors will use to make a diagnosis.
What triggers PANS/ PANDAS?
A PANS/ PANDAS flare may be triggered by any of the following:
- infection (e.g.: strep throat, common cold)
- metabolic changes within the child’s body
- environmental factors
These triggers are thought to cause a misdirected immune response resulting in inflammation in the child’s brain. You can learn more about what is happening in the brain of a child with PANS/ PANDAS here and also here.
Are there treatments?
The good news is that there are very effective medical treatments that can be prescribed by doctors (e.g.: ibuprofen, antibiotics, steroids and/ or IVIg).
Therapies such as Occupational Therapy and/or Psychology are also important to help manage symptoms. Therapists can join the PANS/ PANDAS Therapists Collective here, to learn more about therapeutic approaches for treating this condition.
What can I do if I suspect my child has PANS/ PANDAS?
To get the right diagnosis and treatment for your child, it is important to ensure that your doctor is up to date with the latest findings in the PANS/ PANDAS research.
It is also important for your child’s therapist to have a good understanding of PANS/ PANDAS, because the interventions used will depend on whether your child is in a PANS/PANDAS flare or not.
The PANS Australia Parent Support Group is a great place to start if you’re wondering about PANS/ PANDAS. There are many experienced and caring parents within this group who can guide you towards PANS/ PANDAS aware doctors and therapists in your area. PANDAS Network and ASPIRE are also two terrific organisations that work to improve the lives of children with PANS/ PANDAS. Both of their websites have a wealth of information.
The birds of hope are everywhere, listen to them sing.Terri Guillemets