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PANS/PANDAS and Therapeutic Support
I am often asked if integrative psychotherapy can be helpful for a child with PANS/PANDAS. My answer is generally yes. Some children and young people find it challenging to engage with support when in a flare and benefit more after the flare. Many parents and siblings find support very helpful during a flare, when life feels very challenging. However, it is not possible to heal when in crisis, as the nervous system is on high alert.
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Living with PANS/PANDAS can create some traumatic experiences and memories for all involved. Parents and siblings are often the forgotten victims of PANS/PANDAS. During a flare having a safe space to talk through, process and help co-regulate can be very supportive, and aid the parent to be the calm for the child's storm.
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Post flare therapeutic support to help understand the mind-body connection of these experiences, what is happening in the brain, support to understand OCD and anxiety and a space to process life and how challenging it can be, should be part of the treatment plan. From experience, a PANS/PANDAS treatment triangle seems to work well with medical, holistic and therapeutic support.
When families look for therapeutic support, it may be helpful to look for a psychotherapist or psychologist who offer more than just a mental health perspective. It would be beneficial to find practitioners who have understanding and experience of working with children with on going health and life limiting conditions. Those with an approach that is not just psychological, but working with the mind-body connection in a trauma informed approach. In my experience PANS/PANDAS children can also find purely talk based therapy draining. A practitioner who can also offer an integrative approach with a mix of art, play and talk psychotherapy seems to suit PANS/PANDAS children.
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As a PANS/PANDAS parent/carer you are holding so much. You are trying to support a child in distress, keep yourself together and afloat, support siblings and keep your home functioning. It is a lot. Caring for a child initially, then through the roller coaster of a flare and after a flare, takes up a huge amount of energy. Please remember that your wellbeing is in important too, even if it is not easy to prioritise you. If you can prioritise you, and give yourself some love and me time, it will be help you feel stronger, especially important when you have to guide your family through the tough times. Whatever your child's symptoms are, know that you are not alone and there is hope.
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Check out the PANS/PANDAS UK Facebook group- it may be a helpful source of information and support.
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Emotional Pain and PANS/PANDAS
Living through PANS/PANDAS can create deep emotional pain for children and their families. Many things about the condition can make them feel under threat, the symptoms can be sudden, unexplained and intense. Children can change dramatically and have some frightening experiences. And more often than not flare ups create a sense of unpredictability and fear of when, where and how. ​​ Especially with PANS, the triggers can be unexplained. Infection, strep, strap, allergy, mould, stress, Lyme.... So many unknowns.
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Parents and siblings needs can be side-lined and the mental and physical impact on them greatly underestimates. ​Parents tell me about family members and support networks who seemed to not to understand the child's illness or disapproved and judged the parenting choices, creating isolation and a lack of support. Schools where staff have had no understanding of why a child stops doing what they could do before and presumed 'bad behaviour', instigating punishments and shame.
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Many parents tell me how they were told they were the problem, demonised, and judged for no instilling 'better behaviour'. Of how wider society does not understand or recognise, and medical professionals are not trained to spot the symptoms or have an understanding to be able to support. In some case parents have been accused of FII ( fabricated induced illness), of inventing and exaggerating the child's symptoms. Some clients have had social services may be involved and families have been accused of abuse or neglect.
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For many the financial pressure causes deep stress whern parents become full time carers. Many have to give up jobs.
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Siblings tell me how home no longer feels safe because of the unpredictability of their brother or sisters illness. How their needs are not prioritised because ether parents are struggling to meet the needs of their siblings. Where they feel they have to be 'good' all the time and keep everyone happy, and their emotions and feeling squashed down. To watch their parents mental health decline, as they struggle to understand, cope with and advocate for their PANS/PANDAS child.
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School attendance policies cause trauma with parents told they must force their child in, threatened with legal proceedings and children told their parents will go to prison if they do not attend every day.
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These experiences do not help the child or family feel safe. Because of this lack of safety many families face multiple causes of emotional pain
I hear from families that their worlds are turned upside and how they see the world changes. Routines, home life. Jobs and school no longer offer consistent routine and safety. The things they previously relied on to be constant and safe, no longer are and neither are support networks or the professionals they thought they could depend on. PANS/PANDAS symptoms can be unpredictable and distressing which can cause fear and panic. All of these experiences mean many children and their families live in a state of high arousal of danger, unable to relax and creating emotional pain.
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Integrative psychotherapy can help support the healing of emotional pain, but it can't cure a child of PANS/PANDAS. This is a medical condition. However, healing through a safe therapeutic relationship can change:
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Brain chemistry (far more triggering of feel-good brain chemicals and lowering of stress hormones).
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Brain Structure (new top down brain pathways so the top down brain is far more able to calm the fear systems in the bottom brain. Result: Far less anxiety/agitation).
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Body Physiology (Calming in the body will work well, so real states of calm and ease can be felt.)
Dr Eamon McCrory (Developmental Psychopathologist)
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