Zaki was just three years old when he was diagnosed with acute pancreatitis. This is Zaki's pancreatitis story told by his mum, Claire and his dad, Mohamed.
Our journey with pancreatitis began in November 2020 when our gorgeous son Zaki was just 3 years old. He woke up one morning vomiting, complaining of extreme tummy pain and unable to walk. We initially thought it was just a bug, but as he became more unwell, we ended up in A&E. An ultrasound scan showed swelling in Zaki’s pancreas and blood tests confirmed elevated enzyme levels. By that evening, Zaki had been admitted into the hospital and with a confimed diagnosis of acute pancreatitis.
At this stage, we were new to the whole experience of having a seriously unwell child and desperately trying to find out everything we could about pancreatitis in children. Zaki was referred to the specialist centre for management. We did not have any direct communication with the specialist hospital, which made finding answers to our many questions even more challenging!
Zaki was discharged from hospital after a week, and we prayed the attack would be a one off. Further tests including an MRCP (a special MRI scan) were planned for April. But a few days before the scan was due to take place, Zaki again woke in the morning with vomiting and extreme tummy pain. Back at A&E, tests confirmed our worst fears, a second acute attack of pancreatitis. We began to realise that this condition might not go away.
The second episode of acute pancreatitis meant that the doctors were unable to view Zaki’s pancreatic duct in enough detail during the MRCP scan, so a second scan was planned for July. Again, we tried to remain hopeful that no further acute flare ups would occur, but always at the back of our minds was the possibility that Zaki could become seriously unwell at any time.
In June we went for a lovely family holiday in Devon. We woke the morning of our return journey with Zaki once again complaining of tummy pain and vomiting. It is extremely distressing to see our son in so much pain and very stressful being admitted into a hospital so far away from home. We were extremely concerned, as this was his third acute episode in less than 8 months. We still had no answers as to why.
Nine months after Zaki’s first attack of pancreatitis, we received Zaki’s genetic results. These confimed that Zaki carried the SPINK1 mutation, as well as two mutations on the CFTR gene. Whilst none of these mutations are direct causes, they can increase a person’s predisposition to developing pancreatitis. It was a real shock to know that Zaki’s condition was genetic, especially as there is no history on either side of our family. We also had to deal with the worry of knowing there is no cure for Zaki. We can try and manage pain on a daily basis and do all we can to limit further acute attacks.
By this stage, testing confirmed that Zaki’s pancreas was damaged and was no longer producing the enzymes needed to digest his food. He was given a formal diagnosis of chronic pancreatitis and Pancreatic Exocrine Insuffiency (PEI). He now takes enzyme replacement tablets with every meal and snack. Sometimes this can be upwards of 8-10 tablets a day which due to his age, have to be opened up onto spoonful’s of apple puree. Zaki has been amazing at taking this all in this stride! We continue to work closely with dietitians to monitor him too, to ensure he doesn’t drop below a healthy weight.
As we write, Zaki has had a period of several months without an acute flare up. He sometimes complains of tummy pain, which we try and manage as best we can at home. However, the doctors have advised us that given his history, any time he experiences more extreme pain and/or vomiting we need to go straight to A&E.
Zaki’s baby sister Talia was born in October, and we are awaiting the results of her genetic tests, as well as phasing of our own genes. We remain so proud of Zaki and his resilience throughout what has been one of the most difficult years of our lives. He is such a kind and loving boy, despite everything he has been through.
We try and focus on living day-to-day, but cannot escape from the thoughts of how this diagnosis will impact Zaki in the future and the anxiety of not knowing if/when another acute attack might occur."We are ever hopeful that advances in medical science and research, like Guts UK funds, may mean that one day a cure for pancreatitis is found!" - Claire and Mohamed, Zaki's parents
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is the only UK charity funding a research fellowship into pancreatitis. We are dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition.
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