My Daughter's Pancreatitis Is A Blessing, Not Just A Challenge - Cincinnati Children's Blog

My Daughter’s Pancreatitis Is A Blessing, Not Just A Challenge

“You want a child with a little fire in them…it makes them strong!”

We always kept this in mind when Claudia was a toddler because that fire would get her to try stuff and accomplish things we did not think were possible. It’s a quality has become her biggest asset in dealing with challenges life has thrown her way.

Around age three Claudia began to have episodes of severe stomach pain and vomiting. At age 9 Claudia had an “episode” for more than three weeks. She lost 11 pounds off her tiny frame, was in severe pain and exhausted. Initial diagnosis of constipation led to eight enemas, and rounds of Miralax. She could not eat because of the pain.

However, she went to school and continued swim practice for hours a day, determined compete at a favorite meet. Claudia was so hungry at the meet that she had one bite of a pretzel and began to get sick in the bathroom before her next race. We brought her directly to Cincinnati Children’s Mason Urgent Care. With another diagnosis of severe constipation, we went home. Our wonderful pediatrician was baffled and decided to admit her to Cincinnati Children’s Burnet Campus, a few days before Halloween. Our family would never be the same, but it would be even better, and our journey with Cincinnati Children’s had just begun.

Claudia had pancreatitis, which is inflammation of the pancreas causing severe abdominal pain. We had never heard of pancreatitis but we knew perhaps this what she had been dealing with for years. Two more hospital stays for pancreatitis within the next three months prompted us to request genetic testing. We discovered Claudia has a gene affecting the function of the pancreas and a CFTR gene mutation, a perfect cocktail for pancreatic trouble.

When Claudia was first diagnosed Cincinnati did not have a specialist for pancreatic care – as parents we were scared by what we read on the internet – and we wanted answers. We traveled to another children’s hospital where her gene was discovered. We found that they too had no concrete answer to the million dollar question, why? What causes a flare and how can we stop them, no one could answer it. We still don’t really know, but the team here in Cincinnati is working to find answers.

Pancreatitis has been a blessing for us, not just a challenge. It has taught Claudia to be more flexible. We never know when the next attack will be. Claudia has learned to roll with it as it comes, which has been an important life lesson for a perfectionist child and for parents who like to plan. It has shown us how strong Claudia can be, strong enough to swim at a Junior Olympic state meet silently in pain without knowing she had a blocked, sludge-filled bile duct, and gallbladder attack. However, sometimes as her parents we struggle with when and how to pull her back and to teach her to let us know when she is in pain and to take time to slow down. Now she is realizing the sooner she gets the attack under control, often the less time she will spend in the hospital recovering.

Claudia is tough but knows when she needs to go to the hospital. Once there, she will get her blood drawn quickly to check her amylase and lipase levels. IVs are started immediately to get her the fluid and pain medicine she needs until she can be admitted. She will go a few days without food or drink until her pancreas can handle it and has IV pain medication to keep her comfortable. Hospital stays like this on the A4S floor have become like visiting family. Over the years the staff has watched Claudia grow and has shown her love and compassion in the toughest times.

Cincinnati Children’s now has a Pancreas Care Center and doctors have worked with us to keep Claudia’s quality of life great, whether it was finding out if Claudia could participate in swim practice with her feeding tube (she was probably the first Cincinnati Marlin to train with a feeding tube in), to her nurse Jenny Jacobs helping us during an attack when we were vacationing out of state.

Dr. Lin has been a comfort to Claudia before all of her various procedures: endoscopic retrograde cholangiopancreatography (ERCP), magnetic resonance cholangiopancreatography (MRCP), gall bladder removal and bile duct draining. Claudia is monitored around every six months with an MRCP and an ERCP once a year. We’ve been told that this plan may be modified as her needs change over time. She also has clinic visits a few times a year but we can call Dr. Lin’s team whenever we need them. We recently helped the Pancreas Care Center create a video about the program, which can be viewed here.

The fear of a flare for parents of chronic pancreatitis children is constant. Claudia has around two flares per year on average. Her hospital stays have been as short as a few days to as long as about a month. As a family we have found that living each day with happiness and thankfulness for good health is the best way. Also our continual low fat diet is a big factor for us too!

We are thankful for each healthy day, because that is a bigger success than a qualifying time in a race or an A+ on a test. Claudia and her older sister Morgan have goals to be in the medical profession one day, and we know that the positive experiences at Cincinnati Children’s have fueled their dreams. With all of the challenges Claudia and our family face, we know that they will do everything possible to make them come true!

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Diane Butterfield

About the Author: Diane Butterfield

Diane, a substitute teacher, and her husband Chris reside in Liberty Township with Claudia and her older sister Morgan. They are both from out of state and are thankful to call Cincinnati home and for their wonderful friends who constantly support them like family!

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Comments

  1. Marla Hricovsky March 17, 11:17
    Diane, What a beautiful article you have written about Claudia and your family. You all are an inspiration to each of us and a reminder to never take your health for granted. Your constant smile and enthusiasm for life is a real gift, thanks for sharing with all of us. Blessings to Claudia and your family. Marla
  2. John Tuite March 17, 12:35
    Thank you so much for this article. As a parent of a six year old child with pancreatitis it is so rare to read anything that does not send our system into enormous anxiety, and that's actually quite unhelpful. This article did not do that, and yet touched so many elements of our experience. Thank you again.
  3. Laura Connock March 17, 14:45
    What a great article, about an amazing family, and one tough kid! Love the picture of Claudia, too. You can see the determination on her face as she swims her favorite stroke. :) We are fortunate to have your family as our friends.
  4. Leslie knight March 17, 21:44
    i to have 2 sons with the cftr gene mutation and they have chronic pancreatitis and it is a life changing process for the whole family
    • leanne July 28, 08:59
      Hello, I too have a daughter , age 8 with hereditary chronic panreatitus, its definitelya struggle for her to change her diet. I feel like no matter what I give her shes always in pain, she basically lives with a heating pad attached to her stomach, and tylenol. So far, only one visit to the hospital was needed for a week when first diagnosed . Just looking for suggestions on what you feed your children , and what you truly found to stay away from :) thanks for your help, Leanne
      • Diane B. November 19, 08:05
        Leanne - I have not visited this article in a long time - so sorry! A diet for a child with chronic pancreatitis is challenging - they should be enjoying pizza and ice cream - however, we have found good substitutes. We are LOW FAT all the way! We do fat free frozen yogurt, box cake mixes with diet soda (a trick from the internet), low fat homemade cookies, low fat granola bars, etc. for treats. Lots of chicken! Fat free honey mustard is great for dipping, and many BBQ sauces - but watch the sugar. Oatmeal for breakfast with low fat bagels, fat free cream cheese, TONS OF FRUITS! We do not fry anything or do any fried foods, we rarely go out to eat, unless we can get a nutritional menu, but even then you must watch hidden oils. Lots of pasta, no oils, and lots of egg white omelets with fat free cheese or low fat ham, it is easy when you get the hang of it. Holidays are hard but we still stay vigilant, when we haven't we end up in the hospital. This is what works for us. Stay positive! - Diane
  5. Dan Spracklen November 16, 08:03
    Diane, Great article about Claudia. I love the fight and determination. She is a wonderful inspiration for all that suffer from pancreatitis. I had the honor of meeting her and her team mates last year in Cincinnati at the bowling event. It was great to see such great support. I have hereditary pancreatitis and understand the struggles. We wish Claudia and your family the very best. Thank you for the great article, Dan
  6. Nancy January 10, 01:34
    We have a 10 yr old son with acute recurring pancreatitis due to Spink1 mutation. Although it saddens me to hear of other children suffering, it makes me happy to hear another set of parents are not letting pancreatitis define their child. I would love to get any sources of support that you may recommend as we are fairly new to our kiddos diagnosis. Thanks!
  7. Dr. Mark Fraiman October 07, 00:38
    Thank you for sharing this touching story about your daughter and kudos to her for becoming stronger because of it. As an experienced pancreas surgeon I can appreciate the power of positive thinking. Of course, chronic pancreatitis, especially in a small child, is no fun. But, being able to take what was dealt you in terms of health will help improve overall quality of life. In addition, it is so important to have concerned, dedicated, and caring physicians on your side. Individualizing treatment and having a multidisciplinary team will help in the long run.
  8. Stacy Ragas March 02, 19:05
    I stumbled upon this article today while researching for my 18 year old son. He was diagnosed with PRSS1 mutation in 2002. He did have about 7 years with no issues at all, which we are very blessed for. The last 3 years has been rough. We do know that stress and a stomach bug ( no matter how slight) can cause a flare up for him. Pancreatitis is tough for these children. Pretty tough for us parents to watch them go through this also. I pray that through research they are able to find relief and a cure for all of our children. God bless!
  9. Jane Woods January 14, 04:40
    You'll have a physical examination, and your doctor will order blood tests and imaging tests to confirm whether you have either acute or severe pancreatitis. During the physical examination, your doctor may feel your stomach to see whether your muscles are rigid or your stomach is tender. The blood test, which can only point to pancreatitis — not diagnose it for certain — measures the amount of two digestive enzymes in the pancreas. Pancreatitis can be a difficult condition to navigate, but there are a lot of resources out there that can provide more information on the illness, as well as places to find support. You can also refer to this article which states all the necessary details about pancreatitis https://www.everydayhealth.com/pancreatitis/guide/