At five years old, Archie began vomiting, clutching his tummy and rocking. His parents took him straight to hospital.
We’re Emma and Mark, parents of Archie. Archie is eight years old and has an older sister, Halle, who he often goes paddleboarding with. Archie absolutely adores football, plays for one of the local teams and spends his free time kicking the ball about with his dad and friends.
Archie was five years old when he had his first attack of pancreatitis. We were driving back from a family holiday early in the morning. Archie suddenly looked green and started vomiting bile. We thought he had travel sickness, but he didn’t get better.
When Archie started clutching his tummy and rocking, we took him to our local hospital. Our niece has experienced pancreatitis due to the PRSS1 gene mutation, which can cause hereditary pancreatitis. This was in the back of our minds, and we mentioned it to the team when we got there. One nurse told us, “Children don’t tend to get pancreatitis, he’ll be fine”, but we explained to her that our young niece did in fact have pancreatitis.
The second doctor that we saw tested his amylase levels and they discovered it was pancreatitis. Archie spent five days in hospital, nil-by-mouth and being monitored. Eventually he was allowed home.
Having read other Kranky Panky stories on the Guts UK website, we often wonder that if we were not aware of the PRSS1 gene running in the family, whether it would’ve taken us much longer to get a pancreatitis diagnosis for Archie.
We live in Cumbria, but Archie is under a specialist hospital 90 miles from home. Three months after his first, Archie experienced his second attack of pancreatitis, so we took him to the specialist hospital that he’s under the care of again.
After his second attack, we had a good run for around two years without an attack. Archie experienced tummy pains here and there, but for the most part we’d manage at home. Archie has become quite good at masking his pain, which might be to avoid going to hospital. But as his parents, we know when he’s struggling, though he has a very high pain threshold.
As we tell you Archie’s story, we’re sat in hospital where Archie is recovering from his third attack. As hospital is 90 miles from home, Halle is at home with her grandparents, who have moved in to our house for the time being.
Just before Archie was due to go back to school after the summer holidays, he started with the tummy pains that wouldn’t subside. The hospital did an MRI which showed a dark mass (a pseudocyst). We spent a few weeks in and out of hospital, for a few days here and there. Upon our last return to hospital, his MRI scan showed that his pseudocyst had grown from 5cm to 10cm in just a week.
Archie has been in hospital for five weeks today, and is currently recovering from an operation to drain the cyst. Overall he’s doing better and it was an absolute joy to see him walk again today. He’s still frightened to eat as he’s still bringing up blood due to the operation, but the hospital is wonderful. Archie has even had a visit from Newcastle United Foundation which was a treat for both Archie and Mark, as Newcastle supporters!
We’re grateful Archie is under great care, as we know pancreatitis is complex and uncommon in children. It can be tough explaining to family and friends that there’s no cure. People don’t understand pancreatitis, and tend to assume there’s a ‘quick fix’ or a cure. Whilst in hospital, we’ve welcomed every opportunity to speak to trainee doctors and nurses, helping them recognise pancreatitis and understand more about how it affects families. We say ‘yes!’ to every visitor, as the more people who know about pancreatitis, the better.
The consultants feel that a Total Pancreatectomy with Islet Autotransplantation (TPAIT, where the pancreas is removed and the islet cells that produce insulin are reinfused back into the liver), is the best option long term for Archie. But this hasn’t been performed on many children, and isn’t fully available on the NHS yet.
The Kranky Panky stories on Guts UK’s website made us all feel like we weren’t alone. They can be hard to read, but it helps us knowing that there are children out there like Archie. We show Archie the photos and stories, so he knows he’s not isolated too. This is why we’re sharing our family’s journey today.
We’re hopeful that we’re at the beginning of Archie getting better, and that we’ll be home soon. We’re all missing his big sister, Halle, and cannot wait to be back together as a whole family.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition for families like Archie’s. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.