This is 12 year old Amber's story, as told by her mother Silvia, shared as part of Guts UK's Pancreatitis Awareness Campaign - Kranky Panky.
It all started when my daughter Amber was two years old. She would get terrible tummy pains every few months. She would wake, screaming in pain during the night. She would stop eating and I’d take her to her GP. I was told these were tummy migraines and were common in small children.
This went on until Amber was six years old. One day, she doubled over in severe pain, stopped eating and drinking. She was admitted to hospital. Amber was put on drips, had blood tests and once the pains stopped and she could eat again, she was discharged from hospital with gastroenteritis and coeliac disease. Amber had no symptoms of coeliac, but her blood results were said to be so conclusive she did not require endoscopy.
Amber’s father suffers from pancreatitis and so did his grandfather. We were telling about the family history to all doctors. They were doing all the tests, but no one was able to tell us what was causing all this pain.
After starting on gluten free diet after her coeliac diagnosis, Amber was pain free for six years. I thought this was it! No more pains, this is what it was all that time.
Until one evening in October 2019. Amber got the pains again and this time, they came back with vengeance! Amber became very ill. She hadn’t been eating or drinking, in awful gnawing spasmatic pain, unable to find comfortable position.
As advised by our GP, we tried all the painkillers we could put our hands on at home. I had not slept for over two nights. Nothing even touched the pain. As I was not able to manage her pain at home, I took her to A&E.
At hospital, Amber was put on drips and painkillers including morphine. This was a traumatic experience for both of us. My daughter had cannulas everywhere. Her little veins were not coping.
After a week in hospital Amber had a CT scan. This showed she had her pancreatic duct blocked with debris and a tiny gallstone. Straightaway, we were sent to another hospital. Here, Amber underwent more tests. I was absolutely exhausted by this point. Amber had a stent put in and when she came out of the surgery, she was in so much pain I can barely describe it. Once the morphine kicked in, she started to feel better. Amber was diagnosed with chronic pancreatitis. The consultant told us that her pancreas looked nasty, and this has been going on for a few years. We were over the moon that we made it home for Christmas.
But in January 2020, the pains returned. Amber was pointing to her stomach when asked where it hurts – a stabbing pain travelling along her left side to the back. She complained about a back pain. Amber was admitted to our local hospital. We spent the week in one hospital, until we were transferred back to another hospital where they could manage her pain better. We were told that the stent was fine, that this time the pain was caused by an inflammation on the head of her pancreas. This time they also did genetic tests. We spent a few days there. Once everything calmed down, we went home.
In July 2020, Amber’s stent had to come out. They can’t stay forever. As Amber was well, this was a very straight forward procedure. Here, we were given the results of the genetic test and Amber was diagnosed with hereditary pancreatitis. The long-term plan is to monitor her flare ups as they come. They can literally be caused by anything ie. stress. I was told this was very rare condition in children. Every time she complains of tummy ache, I get butterflies in my stomach and pray it is not another flare up. Amber continues on her diet that works for her, and has to take pancreatic enzymes (creon) when she eats.
This was so nerve-racking, not only for her but for me too. Amber is 12, I do not wish for any child to be in so much pain. She is my brave warrior. We hope that in the future, the research that Guts UK funds will find a cure for pancreatitis, for Amber and for children like her.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is the only UK charity funding a research fellowship into pancreatitis.
People are suffering, people are dying, all because of a lack of knowledge about our guts. Join our community and champion our cause by donating to our life-saving research today.Together, we can find a cure for pancreatitis for children like Amber. Be part of life-saving research by donating to Guts UK today.