Post TPIAT Management

Following Total Pancreatectomy with Islet Autotransplantation (TPIAT), your child will be admitted at Cincinnati Children’s for about a couple of weeks, including about one week in the pediatric intensive care unit. 

In the first weeks after discharge, your child will have clinic appointments with Endocrinology, Gastroenterology, Surgery, Behavioral Medicine & Clinical Psychology, and the Pain Clinic. Physical exams, nutrition evaluations, and lab results will tell us how your child is doing. We will be asking you how things are going after discharge. Lab tests are done every week to monitor your child’s progress. Before going home, you will get a TPIAT Passport and emergency care plan for your child. These things will highlight important medical information. It has a medical history including the TPIAT operation, medications, and treatment plan. The TPIAT Passport should be shared with other healthcare providers outside of Cincinnati Children’s.

The first year after TPIAT can be hard. Lab tests, clinic visits and medicines become a priority. Complications or concerns about your child’s progress may require a hospital stay. Your child’s care team is here to provide the follow-up care, support, resources and information you need.

After You Return Home

Once you return home, your child’s hometown gastroenterologist can partner with us to help with your child’s care. The doctor will see your child as often as needed to closely watch their recovery.

We want to see your child at the PCC on a regular basis. Appointments are required at 3, 6, 9, 12, 18 and 24 months then yearly after TPIAT. These appointments will be scheduled with Gastroenterology, Endocrinology, Surgery, Infectious Disease and Pain Management. You also will need to schedule regular check-ups with your child’s primary care doctor. You may need to schedule regular check-ups with a local gastroenterologist and endocrinologist.

See below for a detailed list of a typical patient post-TPIAT month-by-month management plan:

Management Plan

3 months

  • Surgery appointment
  • GI appointment
  • Endo appointment with Mixed Meal Test (MMT)
  • Infectious disease appointment
  • Pain visit (if pain present or receiving treatment)
  • Nutritional labs
  • Quality of Life (QOL) assessment

6 months

  • Surgery appointment
  • GI appointment
  • Endo appointment with Mixed Meal Test (MMT)
  • Pain visit (if pain present or receiving treatment)
  • Nutritional labs
  • Quality of Life (QOL) assessment

9 months 

  • Surgery appointment
  • GI appointment
  • Endo appointment with Mixed Meal Test (MMT)
  • Pain visit (if pain present or receiving treatment)
  • Quality of Life (QOL) assessment

12 months

  • Surgery appointment
  • GI appointment
  • Endo appointment with Mixed Meal Test (MMT)
  • Pain visit (if pain present or receiving treatment)
  • Infectious disease appointment
  • Nutritional screening
  • Quality of Life (QOL) assessment

18 months

  • Surgery appointment
  • GI appointment
  • Endo appointment with Mixed Meal Test (MMT)
  • Pain visit (if pain present or receiving treatment)
  • Quality of Life (QOL) assessment

Yearly

  • Surgery appointment
  • GI appointment
  • Endo appointment with Mixed Meal Test (MMT)
  • Infectious disease appointment
  • Pain visit (if pain present or receiving treatment)
  • Nutritional screening
  • Quality of Life (QOL) assessment

Medications

  • Pancreatic enzyme supplements 
  • Fat-soluble vitamins
  • Rapid-acting insulin and Long-acting insulin until blood sugars independently stable 
  • Hydroxyurea to stabilize platelet counts
  • Proton Pump Inhibitors to prevent and treat stomach irritation and ulcers and to help pancreatic enzymes work 
  • Penicillin (PCN) until 5 years of age and vaccinations are up to date
  • PCN for 1 year for patients over 5 years (when vaccinations are up to date) 
    • Acetylsalicylic Acid (aspirin) until off Hydroxyurea for at least 4 weeks with no significant rise in platelet counts

Multi-disciplinary Approach

Pancreas Center patients are reviewed weekly in a multi-disciplinary meeting including: