What is Pediatric Pancreatitis? A discussion with Gillian Redman

Last week, we told you about the fundraiser undertaken by Grace’s Kayla Rigby to raise money for her second cousin, Gillian Redman.  Rigby’s senior project involved multiple approaches to raising funds for Redman’s ongoing medical expenses related to pediatric pancreatitis and the host of resulting medical issues that she continues to deal with.  

This week, we bring you Gillian’s story in her words—what her experience has been like, and what she would like people to know about her condition and her story

Gillian Redman  

I’ve had abdominal pain since I was about 4 years old. The pain was off and on but over the last 3 years it started to come daily. 

I’ve been misdiagnosed multiple times throughout my life and finally got the diagnosis of pediatric chronic pancreatitis in January of ‘24.  Pediatric pancreatitis is different from pancreatitis that most adults get.  Most kids that are diagnosed have autoimmune diseases or genetic mutations. My genetic mutation causes the digestive enzymes to develop at the wrong time and not know when to stop causing it to break down my pancreas. I’ve dealt with a lot pain, nausea and exhaustion. After my diagnosis my specialist started me on medicine that would help with my daily pain. 

Sometimes my pain would get so bad that I would have to go to the er to get my pain under control.  I was hospitalized a couple times for pain control and when my specialist realized my meds weren’t doing as good as we hoped, we started doing stents. Stents are like coffee straws that they place in the pancreatic duct to help the drainage of the enzymes. This is done through an endoscopy so no surgery is required.  The size and length of the stent can depend on the person. My first stent was first placed in august and I got it replaced with a bigger one in September. 

The pancreas is the most unforgiving organ and does not like to be messed with so placing these stents can cause a flare.  After my second stent was placed I went into a really bad flare and was in the hospital for two weeks.  

We realized that the stents were not working and that they just made my pancreas angry.  My specialist recommended that we get a consultation in Columbus Ohio for the TPIAT surgery (Total Pancreatectomy with Islet Autotransplantation). There are only a couple surgeons in the whole country who do this surgery, and Ohio was highly recommended. 

My mom and I flew out to Ohio end of October.  They do lots of different tests and talk about everything to expect during and after surgery.  While I was there they found that my gallbladder was full of stones so they took that out November 15th.  I had an endoscopic ultrasound a month later and was told that my pancreas has gotten worse. The results were given to Ohio and the doctors approved the surgery to happen on March 4th. 

My mom and I were told we would be in Ohio for 6-8 weeks. 

During this surgery the pancreas, spleen, gallbladder, appendix, and part of the small bowel are taken out. The pancreas is then sent to a lab to isolate the islet cells and inject them into the liver.   

You are guaranteed to have diabetes after surgery but the hope is that the islet cells start working in your liver.   You are told to expect a whole week in the PICU and a week on the admission floor.  Due to hyper hydration to help the islet cell transplantation work, I went into respiratory failure and I was placed on a BiPAP machine for 3 days.  I was able to get out of the PICU on time and things were heading in the right direction.  I was in the hospital for 2 1/2 weeks and got out the day before my 18th birthday.   We stayed in Ohio for about another month. 

Right now the plan is to make sure all of my labs are in the correct spots and that my diabetes is well managed.  I still have some pain and nausea but it is much easier to manage and I would take this pain over my pancreatitis pain any day.

The day of the fundraiser was the first day that I met Kayla.  She reached out to me on my birthday and told me a little about what she has had to go through and then again a couple weeks before the fundraiser.  I would love for others to know a little bit more about pediatric pancreatitis and be aware that kids can get it and hopefully it would be on the radar to check children before it gets worse.