PANS and PANDAS are conditions causing inflammation in the brain resulting in neuro-psychiatric symptoms such as OCD, tics, eating disorders and anxiety along with many more. More commonly affecting children, these conditions can be isolating and life changing. PANS PANDAS UK's mission is to ensure speedy diagnosis and effective treatment for sufferers by educating the medical community as well as offering support to sufferers and their families. For more information please see our website www.panspandas.org.uk

 Charlie's story

Charlie was born in 2015 weighing exactly 7lb.  We already knew that he was a character, especially as he had decided to try to be born arm first like superman, and the fact that the pregnancy was a huge surprise, to say the least.  Charlie was a happy and smiley baby, who met all of his milestones as expected.  He was inquisitive and learned to talk very quickly.  Strangers would comment on how friendly he was. Our neighbour did not know we had a baby as she had never heard a single cry. 

When he was 9 months old, Charlie suddenly became sick.  One minute he was eating his dinner, the next he was burning up, crying, going stiff.  And then he went blank,  it was like he wasn't there, his eyes were open and staring, but he wasn't responding.  We rushed him to A and E where he promptly vomited over everyone.  His eardrum was inflamed, he was observed, given fluid and sent home. 
Following this, Charlie had regular ear infections.  He would burn up, vomit, his ear would stink. He vomited on me a lot. Way more than my other children ever had. When he was two (or three) his ear drum burst.  He was seen by specialists and discharged, no permanent damage had been done. 

By three years old, Charlie had a permanently swollen gland, but he seemed okay, no one was particularly concerned about it. 

Charlie started nursery in September 2018.  He soon developed a tic, where he shrugged his shoulders.  Unsure why he was doing this, we asked him and he said he was practicing shrugging for when he didn't know the answer.  At this time, the nursery would tell me daily, when I collected him, about his bad behaviour ; anger, tantrums and peeing where he shouldn't. I started to dread collecting him as it was all so negative. 

Charlie progressed to reception, he seemed to like it, but developed another tic, this time throat clearing.  This tic was transient and as we went into the first lockdown in March 2020, Charlie's tics were gone.  

The day Charlie returned to school in September his throat clearing tic came back.  I asked his teacher whether he was okay in class and told her about the tic and asked her to keep an eye on him.  She told me that Charlie didn't have a tic at school, then promptly forgot all about it. 

In April, Charlie began to take a severe turn for the worse.  He had several tics, he was doing them almost constantly.  He became clingy, didn't enjoy his food anymore.  He became afraid to be alone, and wouldn't even go upstairs without me or his dad.  This is the same boy, who just a year previously had had an entire search party looking for him because he'd gone exploring on his own on holiday.  He became afraid, would talk about 'optical illusions' which were actually hallucinations and his temper worsened.  

One night, he was in bed and he began screaming at the top of his voice, he was making little sense but was shouting 'tie me up, tie me up, tape my wrists together.'  He was throwing things around, screaming, raging and making no sense.  I was afraid he had been abused without me knowing, as the things he was saying were so disturbing.  After that, I discovered that a couple of people had told him to stop tic-ing whilst he was in their care.  I believed that this was the cause of his anger.  

Following on from this, Charlie's school became more and more concerned about his behaviour.  The head teacher rang me and told me that Charlie had become violent and out of control and that he had used a hold on him as he was a danger to himself and others.  After this, he would regularly trash the classroom, try to hit the other children and the staff.  I had to collect him early several times.  His tics were off the scale. And at home his behaviour was unbearable.  

He was referred for ADHD and ASD screening.  The school believed that Charlie was showing signs of Autism, I didn't agree, but we could all see that there was a big problem.  We filled in the paperwork and a few weeks later I received a letter saying that it sounded like Charlie had insecure attachment and the referral was rejected.  I was extremely offended.  I felt blamed. 

Charlie's behaviour worsened.  He would rage at the slightest thing, we were tip toeing around our 6 year old trying not to set him off.  he became increasingly violent and at one point, alone in the house with him, I actually felt afraid.  Where do you turn when your small child is punching and kicking you, throwing things at you and breaking everything they can?  There feels like there is no where to turn and it is so frightening. He would rage and scream, hitting, biting and kicking, but at the same time he would be shouting 'I'm not doing this on purpose'  it was like he was possessed.  He also began to pee himself at school and sometimes at night. I felt so sad for him, he couldn't enjoy anything, he looked so sad.  

I had heard about PANS and PANDAS through a private therapist and with Charlie's history of ear infections, she advised that if he ever gets a sore throat to have him swabbed to check for Group A Strep. Charlie developed tonsillitis and before obtaining antibiotics, I swabbed his throat.  Group A Strep was found.  The day Charlie started his antibiotics, he was so violent I had to sit outside away from him.  I rang the school asking for help, I rang the community paed and my GP begging for someone to help me.  There was no answer, except send him to school to give me a break.  Two days later my smiling happy boy was back.  He was loving, he had a sense of humour, he could cope with the word no.  It was as though a miracle had occurred.  He had a 10 day course of penicillin and in that time we got see the real Charlie. Within days of the course ending, the raging, angry Charlie was back.  His throat was swabbed and Group A Strep was found again. 

Louise (my fellow runner) told me about a friend, Lucy, whose young son had been diagnosed with PANDAS and put me in touch with her. There were so many similarities between our children, it was astounding.  And the best thing of all, her little boy, Jack, had gone from being extremely sick and unable to leave the house to making a full recovery.  Lucy gave me the details of the private doctor that she had used to treat her son, we made an immediate appointment and Charlie has now been diagnosed with PANDAS.  He is currently on antibiotics and ibuprofen to reduce the inflammation in his brain.  

He still has tics, intrusive thoughts and hallucinations, but his rages have almost gone. These were the most debilitating of his symptoms as we were unable to function as a family, and it was extremely difficult to comfort him, he always felt guilty and ashamed of his behaviour, despite the fact that it wasn't his fault, his brain was quite literally on fire. 

Very few people have heard of PANS and PANDAS.  It is estimated to affect 1:200 people and it runs in families (as do all tendencies to autoimmune conditions)  
How many children and families are suffering with severe mental illness, who actually only need something as simple as penicillin and ibuprofen to make life liveable again?  

Louise and I would like to raise funds for PANS PANDAS UK and awareness of the condition by running the Leicester Half Marathon this year.  Please support us if you can, even if it is just by sharing this information. 

Maybe you know someone whose family member is suffering like this.  It is worth directing them to the PANS PANDAS website, they have information for families, GPs and schools too.  

Thank you for reading this.  xxx