It came out of nowhere.
Beau was a normal, happy, healthy boy, when all of a sudden, one day in October 2020, we were walking to school and he started screaming: ‘Mummy, someone is stabbing me!’
He’d never experienced any chest pains before but he refused to go into school so I took him home and called the GP who told me to take him straight to A&E.
They advised us to give him some Calpol and that he’d be fine in a couple of days.
However, over the weekend he got worse and by Sunday Beau was struggling tobreathe because he was in so much pain. He couldn’t eat or sleep – he just walked around clutching his chest in agony.
It was the beginning of months of hospital stays and tests for my son, along with multiple diagnoses including acid reflux, appendicitis, costochondritis – inflammation to the chest wall and sternum – and then later a bacterial infection called H. pylori.
Beau was given various treatments but nothing worked and his health continued to decline. One day I was called by the school because he was sitting in the corner and crying in pain.
By the Christmas lockdown, he wouldn’t get out of bed, wasn’t interested in his presents and refused his Christmas dinner. He was in constant pain and unable to do anything. My fun, outgoing, happy boy was totally unable to interact. He went completely inside himself.
Our family doctor was brilliant and Beau had loads of tests, but he was drawing blanks.
Then, by February, Beau started to vomit blood, which was terrifying. He was rushed to hospital and admitted for yet more tests. The consultant sat on the end of his bed and said: ‘We think it’s all in his head. We think you should go home.’
I was distraught. How had Beau gone from being such a fun, outgoing happy boy to this? He’d lost a stone and was slowly shutting down. It was heartbreaking. I was his mum and I couldn’t do anything to help him. He had completely stopped talking by this point, communicating with us using texts and emojis on his iPad.
He was being fed by a tube through his nose and his mobility was going too, so I had to help Beau get to the toilet and give him bed baths. Soon he couldn’t even ouldn’t sleep because he was in constant pain. It was worse than having a newborn.
I was looking after him round the clock and we still didn’t know what was wrong with him. Every day was an uphill struggle and I had to cancel all my work, as a social media expert and coach, as I was too shattered to look after my clients. I was scared we’d have to put him in a care home. I just didn’t know what to do.
In August, a consultant from Great Ormond Street finally diagnosed Beau with Pervasive Arousal Withdrawal Syndrome. Known as PAWS, it’s a rare mental health condition in which a child’s body begins to shut down following a traumatic incident.
We later connected it to an time when Beau was beaten up by a group of children at a caravan park. He had been pushed to the floor, kicked and punched and had refused to come out of the caravan the rest of the weekend.
Every day was the same by this point and it was absolutely exhausting. My husband Richard would take the kids to school and drive my daughter to college. He would cook and do the housework while I looked after Beau. I remember thinking; is this it? Will I be a full time carer for the rest of my life? It was so depressing. I couldn’t see a light at the end of the tunnel and doctors at our hospital were stumped.
Getting the diagnosis, was a real mix of emotions. It was amazing to know at last what was wrong, but I was also frightened and couldn’t believe all these symptoms were mental-health related.
We were offered a bed for me and Beau at Croft Child and Family Unit in Cambridge an hour from our home, and more than a year after our nightmare had begun, we arrived at the new hospital.
There were four other children there with eating disorders or behavioural issues and it was a huge relief to be with parents who were in a similar situation. By this point, I had totally shut myself off from my friends.
I couldn’t talk about what Beau was going through. People would say things like: ‘There can’t be anything wrong with him. Just get him talking him again. Get him out from under those covers. Why are you pushing him around in a wheelchair?’ It made me not want to be around people.
It was hard, being away from Rich and the children. I had to wear a mask all the time because of Covid and there were constant meetings with doctors and consultants.
I was sharing a kitchen with other parents and health workers and it was awful being away from home. But we were starting to see progress. Everyone worked so hard with physio and other treatments to get Beau off the tube and walking again; trying to kick all the habits that PAWS had introduced.
By Christmas, we decided we wanted to go to Lanzarote. That holiday changed everything. Beau was in a wheelchair by that point and still using a feeding tube. But after a few days of watching the kids in the swimming pool, he wanted to go in.
But the water went in his tube and he didn’t like it and wanted it to be taken out. I refused as we didn’t have enough to keep replacing them. So he typed on his iPad: ‘I want my tube taken out. I will eat dinner tonight.’ I couldn’t believe it.
That night, we went out for a curry and Beau ate a bit of bread dipped in sauce. It was real progress. His face when he ate it was unforgettable – like when a baby tastes a lemon for the first time. The whole family cheered and then everyone started bribing him, paying him a euro to eat another mouthful.
The next day we came down for breakfast and wheeled him around the food and his plate was piled high baked beans, bacon and pasta. He still couldn’t eat much but the tube never went back in. After a few days, he started crawling and then walking around the pool holding onto us. He was doing so well and we all felt amazing.
By the end of the holiday Beau was scuba diving with all the equipment in the pool. It was incredible. Just a week before he had been hiding under his blanket in his wheelchair. I couldn’t believe what was happening.
Beau had been getting tics with the chest pains and was all crunched up because of the agony, his body and face often rigid – but that holiday he started to relax and smile a little.
After the New Year my son walked back into the hospital on crutches, without a tube, and the nurses didn’t know who he was. They were amazed.
We were discharged from the hospital at the end of March and by July he was doing two hours of school in the morning, coming home for lunch and an hour and a half in the afternoon. He started secondary school in September and started talking again properly in October.
That was a moment I’ll never forget. I was in the kitchen when I heard a voice saying. ‘Mum, can I have a biscuit?’ I thought it was his sister Molly at first. It was the first time he’d spoken in over a year. The weird thing was that his voice had broken, and I hadn’t known. He started chatting soon after; it was the final missing piece in getting him back.
Life is still a struggle for Beau and he can relapse at any time. If he gets a cold, he will stop eating and drinking, he will go into himself and not interact for a week at a time. But he has made amazing progress and we are starting to get our fun-loving boy back.
It’s been overwhelming. The last three years really affected us all. Molly lost her best mate, which really affected her confidence. I’ve been left with PTSD and anxiety, which I work on every day, while Richard was also really affected and we’ve all experienced real trauma and grief.
Only a small percentage of parents stay together following something like this. It took its toll on our relationship – living apart and always putting the children first. But Rich and I really wanted to pull through. It was really hard but it’s made us a lot stronger.
I’m back at work and Beau, now 12, is doing well at school, so I’ve used my experience to create a programme called the Social Media Managers Academy to help parents of children with special needs learn how to start their own social media business. I wanted something good to come out of something so bad and I’m excited to help other parents see that they have a future alongside being a carer.
Beau doesn’t remember anything about his life before becoming ill. He won’t talk about anything that happened when he was poorly or look at photographs of that time.
But he’s happy now and is starting to make new friends. He’s not the boy we had. We lost that boy, but we so love the boy we’ve got now.
As told to Sarah Ingram.
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