Frequently Asked Questions

My child receives care from a local pediatrician and gastroenterologist. What would be the advantage of coming to see you?

As you may have heard, multidisciplinary intestinal rehabilitation programs can deliver life-changing care. Here at Stanford Medicine Children’s Health, we are able to provide highly complex care and offer solutions where none seemed to exist before. Bringing several of the best minds in intestinal rehabilitation together to assess and treat your child guarantees that you will receive the highest-quality and most current care. We are happy to partner with your local pediatrician and specialists to carry our care plan forward. We are also happy to provide second opinions.

What can we expect on our first visit?

We gather our entire multidisciplinary team to meet with you and your child to gain a holistic view of your child’s needs and your family’s needs. We then complete an exam and evaluation, including testing, imaging, and lab work as needed. At the end of the visit—which can last a few hours—we provide you with a detailed care plan, complete with next steps. If you come to us via the emergency room with acute needs, your child may be admitted to the hospital. For children without immediate needs, we will assess whether your child needs inpatient care or, more likely, outpatient care with regular visits to our program.

What can we expect when starting total parenteral nutrition (TPN)?

At first, you and your child will meet with a physician, clinical nurse specialist, social worker, and dietitian every two to three weeks to receive education on caring for central lines, changing dressings, and mixing formulas. At each visit, your child will have labs drawn to check for nutritional deficiencies and liver disease. TPN formula is then adjusted to meet these needs, often on a weekly basis. You will then see us every one to three months. If your child is able to get off of TPN, we will see you every six to 12 months to monitor for micronutrient deficiencies and measure growth. If your child’s journey started with a hospital stay—as many infants’ do—we will teach you skills while your child is in the hospital to ready you to care for your child at home.

Can you get my child off of TPN?

Achieving intestinal adaptation—getting your child’s gut healthy enough so that he or she does not have to rely on total parenteral nutrition—is our ultimate goal and what we strive for with every child. By providing cutting-edge, research-driven treatments and procedures, we improve your child’s intestinal health. While there are no guarantees, we are proud of our track record of successfully getting children off of TPN. It’s not fast and easy, but we are dedicated to putting in the effort, being patient, and staying motivated by small improvements over time. Slowly but surely, we can often increase the absorptive capacity of your child’s gut to the point where the child can permanently stop TPN. For some children with congenital illnesses, extremely short bowels, or bowels that are extremely impaired, this may not be possible, but we can ensure that your child achieves the best quality of life possible on TPN.

How do you work with families who live far away?

As one of a few intestinal rehabilitation programs on the West Coast, we see children from around the country. If your child requires TPN, we have you complete lab work close to home for your child. We like to see your child in person at least two to four times a year, when possible.

How do you support teenagers with intestinal conditions?

If your teen desires to go to college or travel, we are here to help him or her map out a plan to make it work. Our team supports young adults in gaining independence in managing their own care, so that when they are ready to venture out on their own, they are ready to do so.