Pediatric Pancreatitis – Caregivers Edition

Support is one of the pillars of the mission of the National Pancreas Foundation (NPF). Caregivers provide selfless support for their loved ones who are suffering from pancreas disease. For this edition, we want to feature the caregivers for those whose voices are rarely heard – those with pediatric pancreatitis. The parents featured in this story are: Eric Rhode (son is Jaden, 13-years-old); Cherie McFadin (son is Trey, 19-years-old); NPF Louisiana Chapter Chair, Jane Macke (son is Cameron, 20-years-old); and Chris and Elizabeth Theisen (daughter is Emily, 5-years-old).

How old was your son/daughter when they were diagnosed? What were their initial symptoms?

Jane Macke: Cameron was first diagnosed with pancreatitis at 8 years of age, in October 2006.  Cameron had been experiencing flu-like symptoms for several days, e.g. nausea, vomiting and diarrhea. His symptoms were getting worse, so I took him to an urgent care facility.  The physician on duty stated that Cameron was dehydrated, had appendicitis and needed to go a hospital.  At that time, 10 months after Hurricane Katrina, the only pediatric surgeon was at Children’s Hospital in New Orleans.  We immediately left the urgent care facility and went to the Children’s Hospital.  Diagnostic tests were run while Cameron was in the emergency room.  The pediatric surgeon came in and told us that the tests revealed that Cameron did not have appendicitis, but he had abnormal fluid in the abdominal area.  A pediatric gastroenterologist was brought in to care for Cameron.  He diagnosed Cameron with pancreatitis.  Cameron had another severe pancreatic attack two months later.  After the second episode, the pediatric gastroenterologist ordered genetic testing.  Cameron was found to have two SPINK 1 mutations.  Cameron was not initially tested for cystic fibrosis, but subsequent testing revealed that he also has a CFTR mutation. During a hospitalization in 2008, the physician performed an emergency ERCP and discovered Cameron had pancreatic divisum.

From December 2008 through February 2015, Cameron was hospitalized at least 12 times and underwent eight ERCPs to remove stones and place stents in the pancreatic duct.  In February 2015, Cameron’s gastroenterologist referred him to the University of Minnesota Masonic Children’s Hospital for a total pancreatectomy with auto islet transplant (TPAIT).  Cameron underwent the TPAIT in June 2015, the summer before his senior year of high school.  Cameron is insulin dependent but pain free and able to enjoy life as a college student.

Eric Rhode: Jaden was 11 years old. His symptoms were vomiting, severe abdominal pain, and nausea. The doctors thought he had the flu.

Cherie McFadin: My son was 16 when he was diagnosed with acute pancreatitis.  He was 18 when he received the chronic diagnosis.  At age 16 before Thanksgiving he had a pneumothorax in his left lung and had surgery to repair the day after Thanksgiving.  He lost a lot of weight during this time and was having a hard time eating right before Christmas.  He was complaining of stomachaches and would throw up occasionally.  Two days after Christmas he was having severe pain on the left side that went up into his chest.  We thought his lung collapsed again and took him to the ER.  A CT scan revealed acute pancreatitis with 3 pseudo cysts.  We were blown away and had no idea what it would entail.  He was in the hospital for a little over a month with his first episode and came home with two drains.

They told us in the ER it was pancreatitis. When we asked what causes it, the said usually alcohol abuse.  Our son had never had a drink.  It wasn’t until he was 19 and had many attacks that they were able to diagnose him with pancreatic divisium.

Chris and Elizabeth Theisen: Emily had been having issues since infancy. The issues were thought to be everything from GI related to glutaric aciduria type 1. Then at 17-months-old she suddenly became very ill in the middle of the night. She was rushed to the ER and spent a week in PICU with sepsis of an unknown origin, lactic acidosis and hyper amoninemia. At 18 months she had a repeat episode. This time the pain was more pronounced in her back, along with vomiting. Even though we were at our local children’s hospital ER (Riley Children’s in Indianapolis) there was a doctor from a local adult hospital covering a shift. Unbeknownst to us she was doing blood work to check for pancreatitis.

When the tests came back as positive (elevated levels of lipase and amylase) a cross department team of specialists didn’t believe it. While being admitted to the hospital they re-ran the tests. At 2 am they came into the room and told us about the diagnosis of acute pancreatitis.

Dumbest question you or your child has received?

CM: We were consulting with a surgeon upon our GI’s recommendation to have a g-tube surgically placed as he could not keep weight on and had the ng tube for over 8 months.  The surgeon could not understand why he couldn’t eat and stated he must have an eating disorder.  He went on to say only developmentally challenged kids needed feeding tubes and he would not do the surgery until he had an eating disorder eval.  It was ridiculous.  The eating disorder clinic could not believe we were even there with his history.

JM: We were never asked any “dumb” questions.  Every time we took Cameron to the emergency room, his pancreatic enzymes were so high that the physicians did not question his pain and the basis for his condition.  I think having the genetic testing done soon after his first few attacks helped because there was documentation about his illness.  However, we did have to deal with medical professionals who did not understand the disease and the best treatments.  We dealt with emergency room physicians who just wanted to keep Cameron in the emergency room and give him fluids to hydrate him and reduce the pain.  They did not want to admit him to the hospital.  When that occurred, I usually insisted that the emergency room physicians call Cameron’s gastroenterologist, who would then admit Cameron to the hospital.

On one occasion, a gastroenterologist, who had been substituting for Cameron’s physician, told me that Cameron did not have heredity pancreatitis.  Luckily, I had Cameron’s genetic test results with me and showed the physician the test results.  The same pediatric gastroenterologist suggested placing a j-tube in Cameron to feed him so he could be discharged from the hospital.  Cameron’s amylase and lipase levels were still high, and he was still having pain.  The physician had not consulted with Cameron’s regular gastroenterologist to see how Cameron’s attacks were normally handled.  The other issue that developed with medical professionals was regarding the administration of pain medication.  The pediatric hospitalist thought she knew more than the gastroenterologists and would not discuss Cameron’s pain issues with them.  I would have to call the gastroenterologist and inform him about pain issues.

Cameron’s teachers and some of our friends and family did not understand how Cameron could look healthy and still be sick.  They did not understand how quickly pancreatic attacks could occur, and/or why Cameron had special dietary requirements.  Cameron had to miss occasions with friends and family because of his health issues.

Theisens: After a handful of documented acute flare ups, and being in the ER at our home children’s hospital, a doctor asked if we gave her gas drops as he thought it was just gas. When she was diagnosed with chronic lung disease (CLD) due to premature birth. One time a doctor read that to mean chronic liver disease and thought it was from alcohol. Also, when insurance companies regularly question her diagnosis and state their system doesn’t take pancreatitis as a valid disease for someone her age. As if all the meds and hospital trips were just made up.

How has your child’s life been different? Adjustments that they have had to make due to pancreatitis?

ER: Jaden has missed a lot of school. He has an extra set of textbooks at home, so that he can do assignments when he is not able to go to school. His teachers also make adjustments to his homework assignments. He is also forced to miss some activities that he enjoys such as soccer and bowling when a flare-up occurs. Also, we have had to eliminate sleepovers because lack of sleep seems to trigger an attack.  I’m on pins and needles daily worrying if he is going to get through each day without having an attack. It’s very stressful trying to go on family vacations or events, not knowing whether an attack is going to occur. For Jaden, the only option that we have is to get his pancreas removed. Right now his mom and I are not convinced that he is mature enough to deal with the lifestyle changes that will occur after the surgery. So, at this time, we are hoping and praying that his attacks become less frequent.

JM: Before Cameron was diagnosed with pancreatitis, he played baseball and flag football.  After his second hospitalization, his physician suggested that Cameron give up contact sports to prevent further injury to the pancreas.  As a result of his numerous hospitalizations in elementary school, he had a small circle of friends.  Whenever he went to a friend’s house, I would have to bring food for him or consult with the friend’s mother about snacks.  He was unable to go on the annual seventh grade trip to Washington, D.C., because there were concerns about him becoming ill on the trip.  However, Cameron maintained his grades and became involved in other activities at school, e.g. the drama club and student council.  He was elected president of the student council in seventh grade.

In high school, Cameron was hospitalized at least one week each semester.  The numerous hospitalizations took a toll not only on his physical state, but also his emotional well-being.  He was diagnosed with social anxiety and depression.  Cameron was determined to still maintain the life of a normal teenager.  He was involved in the theater department and a member of the high school’s improv group.  In his junior and senior years, he was part of the leadership of the two groups.  Cameron maintained his grades, graduating summa cum laude and was named a National Merit Finalist.  Through the theatre and improv clubs, he developed a small group of friends, who would visit him when he was in the hospital.  One time, there must have been about ten of them, and they sang Broadway musical songs.  I’m so thankful that they would visit him.  It lifted his spirits so much to see them.

Other adjustments included a change in his diet and learning time management.  He and I both learned how to read the nutritional information on food packages and how to make appropriate low-fat substitutions. I felt so bad for him because beignets (fried doughnuts) were one of his favorite foods.  His elementary school had beignets every Friday morning for breakfast.  I learned how to bake low-fat doughnuts so he could have some type of sweet treat.

In high school, time management was a major issue. Never knowing when Cameron would get sick, we had to be prepared to be away from work and school.  Cameron had to learn not to procrastinate and complete his school as soon as it was assigned.  I have to say that, for the most part, the faculty and staff at his elementary and high schools were understanding and supportive.

CM: Trey is pretty much in bed most days.  He had to finish his senior year at home, but was able to graduate.  They made accommodations at school for him to attend the awards ceremony by giving him all his scholarship awards at the very beginning so he could leave.  He was one point away from a perfect score on his ACT.  He had offers from many schools and cannot attend.  He is looking into doing some online classes in the fall.  Thankfully he has friends that are gamers and spends time playing online games with them.  We had to change the way our family looked.  He is no longer able to travel on vacations with us or do anything strenuous.

Theisens: From 10 months through 4 years old we had an inpatient stay basically once every other month. The stays ranged from 3 days to 3 weeks at a time. This not only affected Emily’s life, but our entire families. She has had NG, NJ, G and GJ tubes to get formula feeds. She has been on TPN feedings for over 2 years now (still currently), often times in conjunction with formula feeds via tubes. Our cabinets are filled with the various medicines she needs to take daily, along with our pantry being converted into her IV closet. I think the biggest adjustment Emme has ever had to make was to stop eating altogether. She did not have any oral consumption for nearly 3 years. Yet, she was fascinated with food, loved to watch cooking shows, pretend to cook and even play with food….but knew she couldn’t eat it and wanted to desperately….even if it was just a taste here or a lick there.

Emily had TPAIT at Cincinnati Children’s Hospital at 4 years old. She was, and likely still is, their youngest patient to have this procedure. Luckily removing the pancreas meant she didn’t have to deal with pancreatitis anymore. She is currently Type 1 diabetic, on an insulin pump, while her islet cells try to regenerate in her liver. While managing Type 1 in a child so young is tough, we would trade it for pancreatitis any day of the week. Emme still faces challenges every day and she is moving slowly in the right direction. However, since the procedure, she has seen exponential growth physically and mentally. Her entire body and mind were fighting the diseased pancreas. Once it was gone she flourished.

 What do you wish people understood about pancreatitis?

JM: I wish people understood that pancreatic diseases are serious and life-threatening.  Most people do not understand the function of the pancreas, and that any injury to the pancreas can result in life-changing injuries. Most do not know that a pancreatic attack can occur suddenly, with no specific reason or trigger causing it to occur.  Also, how debilitating and painful the disease can be.  It is important for people to know that pancreatic diseases affect a person’s quality of life, both physically and mentally.  It is a chronic disease.  While a patient may get through an episode or flare, the disease is not going away.  Pancreatitis can be a chronic, progressive disease. And, most importantly, a child is not going to lie about being pain.  A child does not want to go the hospital and be poked by needles.  As Cameron got older, he would not tell me when he was beginning to experience pancreatic pain.  He would only tell when the pain was so bad that he could not handle it.

ER: That it is extremely painful and can affect people of ages. People seem to have a belief that Pancreatitis is only caused by drugs and alcohol. There are various causes.

CM: I wish people would understand he just can’t eat and be cured.  I want people to know that a chronic diagnosis is lifelong and he will always have challenges to adapt to with this disease.  I also want ER doctors to understand pancreas patients are not drug seekers and are in a severe amount of pain.

Theisens: That it’s not just related to drinking, lifestyle or only affects adults. It’s hard to describe the level of pain someone with pancreatitis goes through, even more so when that person is a child. Even though someone looks healthy on the outside they are suffering much more than other diseases on the inside.

What’s been the biggest challenge?

CM: Getting the proper amount of pain control in the hospital.  Hospitalists often think because his weight is so low, they cannot give a lot of meds.  The other biggest one for us was the surgeon thinking he had an eating disorder and should be able to eat.  Another challenge has been our location for specialists.   We live in Arkansas and the closest children’s hospital was 3 ½ hours away.  The GI department was very piece meal.  We made the decision to seek out treatment and second opinions at Boston Children’s Hospital.  This was costly and not very convenient, but necessary.

JM: Some of the biggest challenges we experienced were when dealing with people who were not knowledgeable about the disease.  Getting Cameron’s teachers, friends and family to understand that your child has a chronic health condition that has to be constantly monitored; that your child may be playing outside at 10:00 a.m., and two hours later, inside crying in pain; that he cannot eat the pizza that the school was providing; and that I would be bringing him to school late because he was having weekly blood draws at the hospital to monitor his pancreatic enzyme levels.

There were challenges when dealing with some medical professionals who were not knowledgeable about pancreatic diseases and thought they knew more than they actually did.  On one occasion, when we mentioned the TP-AIT surgery to a medical professional, he discounted such a surgery, stating that a person could not live without a pancreas.  Another medical professional questioned the need for pain medication, while another did not understand the need not to introduce solid food too quickly during and after a pancreatic attack.

Most importantly, one of the biggest challenges was getting family and friends to understand Cameron’s illness caused adjustments to not only his life, but also to our family life.  One year, Cameron was in the hospital during Christmas, so we brought Christmas to him.  Vacations were planned in a way to ensure that if Cameron got sick away from home, we could find a physician to take care of him.

Theisens: Even though we received a confirmed diagnosis of chronic pancreatitis we still don’t know what initially caused the disease. Many times pancreatitis can appear to be other diseases. Due to the rarity of pediatric pancreatitis many doctors, even at children’s hospitals, they don’t think to check for it. Once we had a diagnosis the logical next steps didn’t seem to alleviate the painful symptoms. Pancreatitis takes on many forms, with many causes and a clear path to resolution is rarely available.

What provides you strength during the tough times?

ER: Running helps to relieve stress. Also, telling myself that there are a lot of people that are worse off than him help me remain positive. Most of the time I am a basket case though. I hate seeing him in pain.

CM: My husband, daughter (Ashley), and even Trey provide a lot of strength.  We try to make the best of hospital stays and have everyone there as much as possible.  Ashley was even able to travel to Boston with us twice.  I have a very strong friend group that keeps me going and a wonderful church community.  During hospital stays, I try and find a time in the afternoons when doctors are done rounding and go exercise and take care of myself.

JM: First, and foremost, my faith provides me strength during tough times.  When Cameron was hospitalized the first time and diagnosed with pancreatitis, I was so scared for him and us.  I had no idea what was happening to my child.  The first thing I did was pray for strength, courage to handle whatever was going to happen, for help to understand this disease and the ability to make the right decisions for Cameron.  Over the years, I know that God has helped us through all of the hospitalizations and surgeries.  He has guided me to find the physicians that would care for Cameron.  I would not be the strong person I am today without my faith.

The support of family and friends also helped during these times.  My daughter, who is seven years older than Cameron, took on responsibilities at home.  She was in high school when Cameron first took ill.  Whenever Cameron was in the hospital, she would come visit him after school.  Some of my friends would visit us in the hospital; bringing food for me and a game or a book for Cameron.  Sometimes, they would just call and talk to me; knowing the need for adult conversation other than medical issues.

Theisens: Our daughter. Her attitude is infectious. Without her strength throughout this fight it wouldn’t have been as easy for us as it has. Our boys. Our 19 year old and 10 year old are great big brothers and show a great deal of strength in their own right. With examples like this it’s much easier for us to keep fighting as well. Our support group. We have a large support group consisting of family, friends and a contingent of online contacts who have either had kids who battle rare diseases or who have learned of Emme’s story. To see the impact our daughter’s life has had on so many people is humbling to say the least.

What advice would you provide to other parents that are going through this?

JM: I would advise parents first to research their child’s illness thoroughly.  You need to know about the illness to ask the pertinent questions. But, be careful of the sources you use.  Seek information from known entities.  When Cameron was first diagnosed, I started researching on the internet.  I found the National Pancreas Foundation website, where I found out about Dr. David Whitcomb and Dr. Mark Lowe’s work at the University of Pittsburgh Medical School.  If your child is diagnosed with pancreatitis and your physician is not a specialist, don’t hesitate to ask for a consultation with a specialist.  Taking Cameron to see Dr. Lowe was one of the best decisions I ever made.  Cameron’s physicians at Children’s would consult with Dr. Lowe almost every time Cameron was in the hospital.

Ask all the questions you have.  No question is a dumb question.  As parents, we need all the information available to make the decisions for our children.  Don’t be afraid to advocate for your child, even if it makes a medical professional uncomfortable.  I have had medical professionals tell me that parents know their children better than anyone else.  Your first concern is your child; not what a medical professional thinks of you.  I’m sure I was called some choice names behind closed doors.  But, that did not stop me from advocating for Cameron.  I was determined that Cameron was going to get the best medical treatment available.

Also, accept support and help from family and friends.  Don’t think you have to go through this alone.  If you have younger children, allow your friends and family to help with them.  But also, allow your family to spend time with your child so you can spend time with your other children.

While there may not be support groups in your area, there are support groups on social media, e.g. Facebook.  Join one of these support groups and reach out for help if you need it. And, most importantly, take care of yourself, physically and mentally.  Don’t be afraid to seek out help from mental health professionals.

ER: Ask as many questions as you can. Research as much as you can. Talk to support groups. Rely heavily on family and friends.

CM: We keep copies of every test and procedure and will take with us to each new specialist or hospital.  Boston was shocked by how organized we were and how much we knew about what was going on with Trey.  Learn as much as you can about procedures and test so you know what to ask for if they haven’t done it or recommended it.  I joined an online support group for chronic pancreatitis and have learned a lot about different procedures and tests that I was not aware of on my own.  My husband keeps a very detailed spreadsheet of EOB’s and bills so we can stay on top of what is actually owed or overcharged.  When you are at home, you have to continue to take care of yourself.  It is easier to get caught up in work and caregiving.  You cannot take care of a chronic person and your family if you are not taking care of yourself.

Theisens: Listen to your gut. While doctors have a vast knowledge of many things, they aren’t always right. We have had great specialists that listened to our concerns, but you must advocate for your child and push them. Pediatric pancreatitis is still a disease where much isn’t known, even by specialists, so seek out counsel from parents that have been through it on various forums and educate yourself.

What made you decide to be active with the National Pancreas Foundation?

JM: As Cameron’s disease progressed, and we continually met with new physicians and other medical professionals, I became of aware of the lack of education about the disease and lack of support for patients and caregivers.  Friends, family members and co-workers, while willing to help, did not understand the severity of the disease.  It became obvious to me that the general public, as well, needed to learn about the disease.  For 10 years, my focus had been on ensuring Cameron’s medical needs were met.  Now, Cameron is doing well.  He has just finished his second year of college and is enjoying college life (including studying abroad in Spain last year).

Now, I want to help bring awareness of pancreatic diseases to the general public and medical professionals.  I want to help provide support for patients and caregivers, especially parents.  I want them to know that they are not alone.  There are people who understand and who care; who will answer questions or just sit and listen to them.  It is my time to give back to those who helped us when Cameron and my family needed it most.

ER: It kills me to see my son in so much pain. This is a horrible disease. I want to see a cure so nobody has to suffer.

CM: We chose Boston Children’s due to the hospital being a NPF hospital.  We wanted those that are up to date on are the research and procedures.  Dr. Amit Grover is a NPF doctor and is amazing.  I wanted to be part of an organization that can help bring more awareness and hopefully more treatments for this disease.

Theisens: Anytime we can help other parents and connect with people facing a similar battle it helps all parties cope. Support and awareness are two big needs and groups like the National Pancreas Foundation and its chapters fill that void.

Links:

*Eric and Cherie will both be running the Marine Corps Marathon on October 28, 2018. To support them in their fundraising efforts, please CLICK HERE. 

*The NPF in partnership with Inspire, has developed a Pancreatitis Support Community where pancreatitis patients and caregivers can ask questions, support one another and share information with each other. Join the conversation today by CLICKING HERE