What is it like to live with a PANS/PANDAS child in lockdown?

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29 April 2021

Sarah’s Story

The beginning of our journey

Three years ago, our daughter had glandular fever (EBV) and soon after developed obsessive-compulsive disorder (OCD) symptoms with intrusive thoughts. Following this, she had a ruptured ovarian cyst which hospitalised her and she subsequently  suffered a strep infection and developed vocal/motor tics. Moreover a further symptom  that developed was sensory sensitivity.

She used to love music and performing arts. However, she had to stop singing, listening to music and was unable to watch TV due to her sensory sensitivity. Noises can be so much louder for her now and her clothes do not feel comfortable on her skin. Since having these symptoms her world has shrunk, the intrusive thoughts are all consuming and often cause her to avoid activities.

Getting a diagnosis

At first, she was diagnosed with Chronic Fatigue Syndrome, but it did not explain the separation anxiety, OCD rituals, intrusive thoughts, deterioration in fine motor skills (handwriting), brain fog, sensory sensitivity, motor and vocal tics. Some doctors were putting these symptoms all down to psychological reasons, yet our daughter was  happy and outgoing before these incidences of infection and any form of  psychotherapy was not providing her with any relief at the time.

Then, on the search for answers, she was diagnosed by a neurologist with PANS/PANDAS but we still struggled to get adequate care and treatment for her. One of the hardest things is knowing that the longer these symptoms are left untreated, the more entrenched and debilitating they become. With every further infection that goes untreated the symptoms also worsen and the immune system becomes more  confused.

The impact of Covid-19

Then Covid-19 caused a delay in receiving medical appointments (which one would expect in a pandemic), but after some time, medical meetings became available by  Zoom or phone which has eased doctor visits because they do not necessarily involve  travelling any more. Due to restrictive measures, we were no longer able to do the activities we were doing before lockdown to try and build up her confidence and to have her face some of her struggles, such as going to a cafe or a trip to the cinema. Her world was already shrinking because of her condition but Covid-19 has compounded the loneliness and isolation.

On a positive note, in 2019 we were trying to access school lessons remotely for our daughter, but the school was not willing to trial them. However, after several lockdowns, teachers are so much more receptive now to young people learning from home if they are not well enough to go into school.

I hope that this openness continues, and that education becomes more flexible and accessible to children/young people who have autoimmune conditions, chronic illnesses and other disabilities as well as special needs.

Girl with a birthday cake in front of her

The future

Our beautiful daughter was fading away, but more recently we were able to consult with a senior private immunologist who specialises in these conditions. We are already seeing significant improvement with her being on antibiotics again and hope she continues to recover.

About PANS/PANDAS

If you wish to understand more of the connection between an infection and the onset of neuropsychiatric symptoms, as in PANS/PANDAS, please visit:  https://www.panspandasuk.org. Watch the Pans Pandas UK Awareness video here: https://youtu.be/ynU9jjQqYx4