What is PANS/ PANDAS?
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 P/P 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.
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.
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.
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 (we have included some of these references below).
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.
PANDAS Network is a great place to start if you’re wondering about PANS/ PANDAS. They can also advise around PANS/ PANDAS aware doctors.
How can Stepping Stones Therapy for Children Help?
Our entire team of therapists are PANS/ PANDAS aware and are able to design treatment plans around the unique needs of children with this condition. You can find about more about us or make an inquiry here: www.steppingstonesforchildren.com.au. Our therapists can offer face to face intervention at our clinic in Newcastle NSW. We can also offer skype consults for those who live outside of Newcastle. We are registered NDIS and Medicare providers for those who are eligible.
Our Director Michelle Newby, has a special interest in PANS/ PANDAS. She is actively engaged in research at the University of Newcastle, NSW Australia as a PhD Candidate; and is looking at how PANS/ PANDAS impacts a child’s level of independence in daily activities and sensory processing abilities during flares, compared with when the child is well. She is hoping to use her research to help other therapists understand the unique needs of children with PANS/ PANDAS. She is presenting the first part of this research at the Royal College of Occupational Therapy, Children, Young People and Families Conference in London UK later this year. She will also be presenting at the SANE Sweden 2019 PANS Conference.
Michelle frequently consults with other therapists working with children who have PANS/ PANDAS, helping them to understand the condition and how to tailor their intervention to help the child get the most out of therapy. She also created the PANS/ PANDAS Therapists Collective on Facebook, a professional development hub for therapists who want to know more about the condition. You can let your therapist know about this group, so that they learn more and better support your child’s recovery.
Where can I learn more?
Please share this blog post with your friends and therapists so that we can all help to raise awareness of this debilitating, but treatable disorder.
*PANS stands for Paediatric Acute-Onset Neuropsychiatric Syndrome; PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Strep infections.
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