% - The Children's e-Hospital

Imagine what it is like to wake up one morning and you are completely lost. You’re still in your room, and everything around you looks the same, but your whole world has changed. You’re no longer you. And this new world, and the new you, is scary, confusing, and is trying to hurt you. Welcome to my world. And the world of PANS.

I’m Sam and I’m going to tell you my story of PANDAS.

First, let me tell you about the “me” before PANDAS. I always wanted to be a famous writer or a famous footballer. I wasn’t sure which but I was sure about the “famous” part! I live with my mum, dad, and little brother Sonny, who is two years below me in school. I used to love school and had loads of friends. They used to call me “Smiley Sam” because I was always happy and joking around . . . until PANDAS happened. I wasn’t so “Smiley Sam” for a while after that.

Life was pretty normal until PANDAS. Then, two years ago, everything changed. It all started with a sore throat that lasted a few days. I didn’t think anything of it – everyone gets sore throats! Mum took me to the doctors anyway — “better safe than sorry” she always says. They did a swab test and the doctor told me I had strep throat. “Nothing to worry about,” he said. And we really weren’t worried to begin with. That changed a few weeks later.

I still had a bit of a sore throat but I felt OK. Then, overnight, everything changed – and, the worst thing was, we didn’t know why. As soon as I woke up, it was like I’d been hit by a thick fog that I couldn’t find my way out of. Sometimes, when you wake up after a nightmare, you still feel bad for a moment because you’re not quite awake. When you have PANDAS, you’re trapped in that nightmare and you can’t escape from it. It’s like a panic attack that doesn’t go away.

I was glued to the bed because the scariest thoughts, that I’d never had before, started firing at me like bullets. I was too scared to move. My whole body didn’t feel like mine. I was blinking so fast I could hardly see and my mouth kept moving in strange ways. It was completely out of my control. I screamed so loud my ears popped. Mum came rushing in and I clung on to her tightly, my nails digging into my palms. My chest was so tight that I had to cling onto her for dear life. I was scared to let her go.

Dad took Sonny to school and I sat there for hours, mum trying to calm me down. Even though she was speaking normally, her voice sounded so loud that it made my head throb. This new world was so scary that I couldn’t

stop screaming. “Make it stop!” I begged mum. I had gone to sleep as Smiley Sam and I’d woken up a completely different Sam altogether. Welcome to the new me – the screaming, stressed Sam.

Over the next few weeks, my strange symptoms got worse. I couldn’t eat anything because I thought food would make me sick – it was not safe and full of germs. My body kept moving in weird ways and I’d make loud clicking noises that I couldn’t control. At first Sonny thought it was funny but then he started getting worried too. I guess it’s a bit scary having one brother one day and then waking up to a completely different one – especially when the new one isn’t very nice. I didn’t like this different person either but I couldn’t help the way I was behaving. And it wasn’t just the strange movements – I don’t know why but I kept having to touch all the doors in the house exactly 100 times before I could leave a room. If I didn’t, I thought something really bad would happen. Then, I’d have to wash my hands over and over again because of the germs on the handles. It would take me ages to leave a room. And I always wanted to be in the same room as mum or dad. If they tried to leave, I’d start panicking. One evening Sonny needed help with his homework, and I completely freaked out when mum left the room to help him. I started screaming and throwing things at both of them. I can’t even remember how they reacted because I was in such a rage. On most days, I’d be in a rage for the whole afternoon and then I’d cry myself to sleep. It was exhausting. It didn’t help that I wasn’t sleeping properly. It took me hours to get to sleep and then I’d have night terrors – my brain felt like it was on fire and I’d sweat and scream for help. Even when I’d wake up, I’d still be trapped in the nightmare.

Mum kept taking me back to the doctor. I remember her telling him it was like living with a stranger. It made me really upset but for some reason I couldn’t stop laughing – how I was reacting didn’t match up. Mum told him all about my strange movements and how I kept checking things over and over again. She looked really worried when she told him how I’d stopped eating. I wanted to explain it was because food would make me sick but I just clung on to her and buried my face in her arms.

The doctor was nodding and writing notes. He said we should wait to see if things got better in the next few days then we could go to see a “mental health” doctor. I started panicking in case it meant I was crazy. He explained that they would try to find out if it was something called OCD – or Obsessive Compulsive Disorder – which meant having to do things in a certain way or a certain amount of times. It didn’t explain lots of the other things but I could see mum was relieved that at least something was happening that might help.

Unfortunately, things got worse over the next few days. Different symptoms started appearing like wetting the bed, which I’d never done before, and massive mood swings – one minute I was running around laughing and then I was sobbing in the corner, unable to move. I’d always been really positive but now I didn’t want to do anything. Even the things I loved doing like writing and playing football got difficult. I couldn’t even make my hand move in the way I wanted it to. I could hardly pick up a pencil. I was getting more and more angry and upset that no one knew how to help me.

Over the next few weeks we saw so many different doctors. Eventually, one gave me medicine for OCD, but it didn’t seem to make much difference. I had loads of blood tests and scans and we still didn’t have an answer. And every time I got sick with a sore throat or cold, all my symptoms suddenly got worse. The trouble was I looked completely fine, so people found it hard to understand what was going on – even the doctors. It’s hard to believe now, but this went on for months and months. Mum and dad searched the internet every night for clues. “We’ll find out what it is,” mum kept saying, “we won’t stop until we do.” I’m so glad they carried on searching, because eventually, when I thought I would be like this forever, mum found a doctor who could help. I was a like a big puzzle and only he managed to solve it.

He was a specialist in PANS and PANDAS and looked at my throat swabs and blood tests. He said all my weird symptoms were caused by something happening deep inside my brain. My brain was under attack! He explained that everyone has an “immune system” that fights bugs to make us well again. But my immune system wasn’t acting in the right way. “Instead of fighting the bugs that made your throat sore,” he said, “your immune system is fighting your brain, making it swollen and sore. Your brain controls everything, even your feelings – it’s like a control centre for your whole body. But when it’s swollen, it doesn’t work very well – that’s what is making you act in these strange ways.”

Mum was crying when he was talking, but I knew they were happy tears. All our lives had been put on hold and at last, there was an answer. The doctor said I needed medicine to make my brain calm down. Once my brain was less swollen, the symptoms would hopefully get better. Mum was trembling as she said, “thank you for helping us.”

Over the next few days, I started taking the medicine. The doctor said it might take some time to work because my brain had been swollen for quite a while. But at least we knew what was causing it. I had to be careful not to catch any other illnesses to give my brain a chance to calm down, but once it did, I should feel much calmer too. I could go back to living my life.

I am getting much better now. When I get sore throats, my symptoms do come back but it’s easier than the first time, because we know why it’s happening. Every time I get symptoms, it’s like another puzzle trying to find the right medicine to get rid of whatever bug is making my brain sore again. But knowing what’s happening makes everything a little less scary. So even though I’m still living with PANDAS, I’m almost back to being “Smiley Sam” again.

Questions and Answers with Dr Tim

What is PANS and PANDAS?

PANS and PANDAS are illnesses which appear suddenly and make you act in strange ways. They happen when your immune system attacks your brain, making it sore and swollen so it doesn’t work properly. With PANS, we don’t know what the trigger is. PANDAS is caused by a Strep infection.

What is your immune system?

Your immune system usually helps your body to fight bugs to make you well again. When you have PANS, your immune system gets confused and attacks your brain instead of the bugs.

What are some of the symptoms of PANS/ PANDAS?

PANS can affect everyone differently but some of the symptoms can include:

OCD (Obsessive Compulsive Disorder) – this is when your brain tells you to do things a certain way or a certain amount of times (like touching the door handles in Sam’s case).

Problems with eating – only eating certain foods or, as in Sam’s case, not eating at all. This may be because you are worried something bad will happen if you do eat.

Tics – moving in strange ways or making strange noises.

Mood Swings – being very happy one minute and then very angry or aggressive the next. This anger may last a long time. The brain controls your feelings but when it is swollen it does not control them properly.

Anxiety – being very worried about things that happen. If you have PANS, you can be worried about small things that would ordinarily not worry you like going to school or being apart from your parents.

Hallucinations – seeing or hearing things that are not really there.

Urinary issues – needing to go to the toilet a lot.

Will PANS go away?

Some children get better quickly once they start taking the right medicine, but sometimes it takes a longer time. The doctors will try to find out which medicine will help and then the symptoms should start to go away. It may take some time for the brain to calm down completely and if you get a new illness your symptoms might come back. But now the doctors know what is happening, they will try to find the right medicine quickly so you won’t be as ill as the first time.

Can someone catch PANS from me?

PANS is not contagious so you cannot catch it or pass it on to someone else. It happens deep inside your brain, which is why it can sometimes take a long time to diagnose.

Author: Dr Ffion Jones