Where it all began.

Where do I even start? What a wild ride so far.

I suppose the beginning would be a good place.

My daughter was a very happy baby. She also met all her developmental ‘norms’ early. She was chatty, funny, and full of life. Fast forward to 3 years old. She stopped eating and drinking for 48hrs. She complained of a sore throat. She was admitted to hospital.

Shortly after this we started to notice a difference in behaviour – it wasn’t over night, just small things that we put down to her starting nursery soon, and the fact that I was heavily pregnant with my youngest. We started to see things like: defiant behaviour, aggression, regression with toileting, restricted eating, becoming mean to friends, sensory difficulties, sleep difficulties, clothing sensitivities & dark thoughts.

She then started nursery and it was very tricky. She would refuse to eat and drink. We never put the pieces together at the time, that an infection could cause this behaviour – (although it seems so clear when I write it down.) Don’t get me wrong, she didn’t have this behaviour all the time. There were happy periods in-between, but it all ramped up when she started school.

I then saw a post on Facebook telling me all about pathological demand avoidance, and everything then made sense. We managed to get a private assessment booked in. In the meantime my daughter was coming back from school and exploding with terrible behaviour. Lashing out at all of us and generally just feeling so unhappy.

We obviously spoke to the school and started to make accommodations. However, she would mask at school so I’m not sure they totally understood where we were coming from. We then had the autism assessment and they diagnosed her with PDA. We then spoke with the school and put her on a reduced timetable as school was extremely triggering. We then learnt a whole new low demand approach and it seemed to help a little.

The whole time she was at school she would not complete any work, even though she was academically able. In year 1 she was on a reduced timetable. At the end of a horrific summer holidays after year 1 – She returned to school for 2 half days in year 2. When I collected her on the second day, she said that she wanted to die, tried to open the car door whilst I was driving, and threw her thermos bottle at the windscreen.

This was it for me. She was not going back. I told the school she is having a mental health break. I had to email every day telling them why she wasn’t in. The dark thoughts got worse and turned into actions. She completely undressed and didn’t go out of the house.

The school made an unplanned welfare check. This made everything 10 times worse. After this my daughter was scared every time the doorbell rang. We then had to do secret welfare checks via WhatsApp video call. My daughter stopped eating, dressing, washing, and brushing her teeth.

I left my job to be a full time carer for my daughter. She stayed in for a whole year without leaving the house. We continued with a low demand approach, but her behaviour did not change. She started to form phobias about every day items – such as spoons. We couldn’t use them at all.

She started to develop tics and had very controlling behaviour. No one was allowed to visit and she would destroy anything and everything. She also wouldn’t allow me out of the house. We spent a year recovering. Just taking everything at her own pace. During this time she was also diagnosed with ADHD.

Her eating declined so much – she wanted food prepared in secret and wanted to eat in secret. The whole thing was a nightmare. We were already under all the services we could think of. All we were offered was a parenting course. ( I used to teach this course in children’s centres.) I started an instagram page to raise awareness of PDA and to make people feel less alone.

I shared the highs and lows of our journey. I also started to speak about my daughter’s OCD with teeth brushing. A WONDERFUL follower told me about PANS/PANDAS. I disregarded PANS/PANDAS before as my daughter’s behaviour wasn’t like a switch overnight.

I looked into it again as I couldn’t bear to see my daughter as unhappy as she was. I contacted the children’s e-hospital and within a week we had an appointment booked. In the meantime I gathered all the doctors records for my daughter – trying to see if there were any patterns with illness and behaviour. I struck gold when I worked out she was in hospital just before it all started to slowly go downhill.

We managed to get my daughter to London for the appointment. We saw Dr Ubhi and it was the first time I felt totally supported and understood. It felt like a tiny glimpse of light at the end of the tunnel. After the appointment & blood tests it was confirmed my daughter has PANDAS. Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.

This means that my daughter’s body created antibodies for a strep infection (when she was 3) and they’ve been attacking her brain ever since. This means her brain has become inflamed and caused OCD, tics, intrusive thoughts, sleep disturbance, restricted eating, and more! We started treatment right away. Just antibiotics & ibuprofen. On the 3rd dose of antibiotics we felt like we were slowly getting our happy little girl back. We couldn’t believe our eyes.

Her OCD vanished and so did her tics! We were gobsmacked. We weren’t having to be constant referees between our daughters- they even played nicely together. My daughter was happy! My husband and I could watch an episode of tv together- something we hadn’t been able to do in a year! However, unfortunately, during the treatment my daughter caught various infections- and can you believe it… we think she had strep, again!

These infections cause flares. Within these flares lots of the ocd, tics, intrusive thoughts, come back. We are now doing the treatment again alongside PEA & homeopathy. We’re seeing our happy girl return. She’s singing again and slowly venturing back out into the world. When she’s not in a flare, we don’t see her PDA demand avoidance or fight/flight response or ADHD characteristics. We are still living a low demand lifestyle and taking each day as it comes.

Overall i’d say we’ve seen a 70% improvement with everything. I still feel like we have a long journey ahead, and lots to learn. I’m hoping sharing our story helps others learn about PANS/PANDAS.