Medically Complex Patients

A large majority of the patients we see as a part of the interdisciplinary feeding team here at UNC have very complex medical diagnoses. This fact makes it very difficult to have standards of care as far as how we treat our patients. Often, in medicine, we have protocols and clinical pathways that guide our care for “types” of patients. These care plans are fantastic when dealing with more typical presentations of problems such as Reflux (not Reflux Disease), Constipation and even Abdominal Pain or Eosinophilic Esophagitis. Large samples of such patients are taken and evaluated as to which treatments produce results, how long such treatments typically take and pathways of which direction to take if a certain treatment is not proving beneficial.

In the case of a large percentage of the population we see within the feeding clinic, there are no other patients with their exact diagnosis or combination of diagnoses. In the medical world we would call these patients and “n” of one. With patients who are unique only to themselves, a standard protocol or pathway cannot be established or followed. This can prove very stressful and confusing to parents and caregivers alike.

A benefit you will receive from visiting our interdisciplinary feeding team is a “meeting of the minds,” so to speak. Three different disciplines will take a detailed feeding history specific to your child and develop the best plan of care to fit your child’s individual needs. Whether your child has eaten by mouth from birth or has never eaten by mouth makes no difference in our ability to develop a plan of care. A large majority of our patients require some type of supplemental feeding tube to consume all of the necessary calories for good growth.

We care for patients who have a range of feeding difficulties from very mild to extremely complex. Eating by mouth is something that is easy to take for granted and also to overlook as a possibility in many patient populations. The one thing that all of our patients have in common is the desire to eat by mouth, even if only in small tastes, which we promote as long as safety has been established. If the ability to eat by mouth enhances the patient’s quality of life, we work hard to assist the patient in doing so.

Medically complex patients are always a bit of a puzzle. Establishing best treatment plans for feeding these patients vary from patient to patient. It often takes a lot of time and patience when trying medications and formulas and evaluating their effectiveness. It also takes a lot of love for these special kids and we have that for sure! Please contact us with any specific questions if you have them or come see us.

2 Comments

  1. My son has aged out of the program as he is almost 4. He was seen for a few years due to oral aversion following 4 month stay in NICU from NEC and large bowel removal. His feeding tube has been removed for 2 years now!!!! His eating is normal. His gut however has changed. Up until November he was getting Miralax daily to help with chronic constipation, then like a light switch turned on, he no longer needed the miralax and now has runny stools. He says his bottom hurts I suspect b/c the stools are loose at all times now. I wonder what I can do to thicken up his stools since he is eating normal now. At the time of NEC, they removed a very large amount of large intestines only with no colostomy bag needed. Would metamucil do the trick?

    • Kristen Cole

      May 24, 2018 at 1:55 pm

      Great news about your son! It is a case by case decision on which treatments and medications are best for each individual. You can schedule an appointment with one of our GI providers by calling 919-966-2435.

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