For every child, we devise a custom, comprehensive care plan to improve the health and function of the bowel and to help families cope with the demands of their children’s condition. This plan can change with time as children grow, and we are committed to ongoing assessment of nutrition status. Our treatment is multifaceted and includes total parenteral nutrition, nutrition support and special diets, feeding therapy, developmental support, parent education, medicines, medical management, and surgery. Our ultimate goal is to partner with you to help your child grow and thrive, and, whenever possible, to move your child beyond dependency on intravenous nutrition, helping him or her to fully engage in school, favorite activities, and life.
Multidisciplinary medical management
To address the full scope of the medical needs of children with intestinal conditions, we partner with our colleagues throughout Stanford Medicine Children’s Health and Stanford Health Care, which includes experts in our pediatric IBD Center, our Pancreas Center, and our Liver Transplant, Intestinal Transplant, and Stem Cell Transplant programs. By working across specialty lines, we engage in individualized precision medicine to design intricate care expressly for your child’s needs. For example:
- For children with a monogenic diarrhea disorder, we collaborate with our highly respected pediatric IBD team and pediatric stem cell transplant team for such targeted solutions as a bone marrow transplant to treat your child’s diarrhea.
- For children with pseudo-obstruction and other issues with motility, we partner with motility specialists from Stanford Health Care’s Gastrointestinal Motility program to advise on a variety of treatments, including motility testing and gastric electrical stimulation. We also carefully balance your child’s nutrition and diet to enhance motility.
- With intestinal conditions, sometimes the liver and kidneys become vulnerable. By taking a multidisciplinary approach and proactively partnering with Gastroenterology, Hepatology and Nutrition, Radiology, and Nephrology, we protect these organs.
- We regularly partner with Lucile Packard Children’s Hospital Stanford’s unique team for central line care and Occupational Therapy, Physical Therapy, and Speech-Language Therapy for feeding therapy.
Individualized nutrition plans
We tailor our care because we know that what works for one child might not work for another. We monitor your child’s growth while ensuring that he or she meets all of his or her macro and micronutrient needs through TPN, enteral nutrition, and oral intake. Our team of dedicated registered dietitians, clinical nurse specialists, physicians, and pharmacists have special training and several years of experience supporting children with intestinal conditions and their families. A number of members on our team are Certified Nutrition Support Clinicians through the American Society for Parenteral and Enteral Nutrition (ASPEN). We are honored to partner with you to carry out these interventions and provide you with the tools and resources you need to help you proactively care for your child.
We provide the following therapies for nutrition support:
- Parenteral nutrition (sometimes called total parenteral nutrition, or TPN). With this intravenous (IV) nutrition feeding method via a central line, we deliver optimized nutrition to ensure your child’s growth and development. Every prescription of TPN is individualized to precisely match each child’s unique, nutritional needs, determined by continued growth and targeted bloodwork. Our team works hand-in-hand with our on-site Children’s Home Pharmacy, where specialized pharmacists and support staff compound TPN, serve as liaisons between patients and doctors, and coordinate deliveries to your home on a weekly or biweekly basis. We provide the healthiest prescription possible for your child. We also fully address the social aspects of eating and eliminate barriers created by TPN so that children can experience their highest quality of life.
- Exclusive enteral nutrition (EEN). EEN is a liquid diet used to improve intestinal health, especially in children with IBD, with the hopes of achieving remission. Medical formulas provide all of your child’s nutritional needs by mouth or by naso-gastric tube, a tube that delivers the formula directly to the stomach for a number of weeks. Your child may use EEN for all, or a portion, of his or her nutritional needs in combination with an oral diet.
- Close monitoring to achieve intestinal adaptation. By providing your child with the utmost nutrition, coupled with decisive medical management and incremental adjustments to TPN and oral diets, we optimize your child’s remaining bowel’s ability to grow and heal. Over time and with great attention, we are able to increase the bowel’s absorptive capacity and wean children off of TPN, thereby achieving intestinal adaptation—a state where the remaining bowel is able to function well enough to sustain health.
- Customized diets. Besides being experts in TPN, our registered dietitians fully understand the nutritional requirements of intestinal conditions. We help you plan healthy meals that are short-bowel friendly, minimizing complications. For example, we create a menu with foods that are low oxalate to reduce the risk of your child developing gallstones or kidney stones, or we suggest foods that help control diarrhea.
- Feeding therapy. We partner with experts across our campus, including pediatric occupational therapists, speech-language therapists, psychologists and psychiatrists, developmental specialists, and our Aerodigestive Clinic, to provide feeding therapy to your child to help with issues of oral aversion and delayed oral feeding skills. These specialists also help your child improve all aspects of feeding.
Accessible nursing support
Our care extends well beyond our doors. Once your child is in our program, we assign you a clinical nurse specialist (CNS), who provides you with holistic nursing support. For example, our clinical nurse specialists:
- Educate you to care for your child at home. We provide detailed instructions on central line care, G-tube care, medications, TPN administration, and other education. By training parents to care for their children at home, we help families avoid unnecessary hospital stays.
- Provide constant support and feedback. Our CNSs are just a phone call away during business hours for feedback as you build confidence, welcoming any questions you may have. We partner with you to help your child achieve enteral autonomy. Our team supports you during this slow but ultimately rewarding process.
- Connect you to other families. We help create a circle of support for you by introducing you to other families whose children have similar conditions. While your situations might not be exact, having people who understand your medical situation is comforting.
Mental health and family support
Our dedicated social workers understand what it’s like to live with a child who requires intestinal rehabilitation. Our team of social workers provide you with emotional and logistical support so that you can succeed at providing healing care for your child. Our social workers:
- Connect you with resources. Our social workers know how to navigate community resources and help you get the support you need. They also connect you with a myriad of patient and family services within Stanford Medicine Children’s Health.
- Provide counseling and support. Social workers help strengthen your coping skills to sustain ongoing care. They’re here to listen and offer solutions.
- Assess and connect children with mental health care. When a child is struggling emotionally or experiencing mental or behavioral health issues, we connect you with a skilled child psychologist or psychiatrist.
- Assess school success and provide support. Social workers serve as liaisons with your child’s school to devise a plan for educational success, including 504 and IEP plans.
- Improve coordination of care. We help you understand your child’s treatment plan and connect you with members of your care team.
Intestinal surgery
As one of the West Coast’s Short Bowel Syndrome Centers of Excellence, our dedicated surgeon is an expert in short bowel syndrome and is highly skilled at addressing a variety of complex bowel needs. These procedures improve the function of the intestines by removing scar tissue, solving obstructions, and improving motility—sometimes by improving upon previous intestinal surgeries to enhance function. At Stanford Medicine Children’s Health, our pioneering research actively explores new surgeries and procedures to improve gut function. In the uncommon instance where a child is experiencing progressive or life-threatening intestinal failure, we partner with our renowned Pediatric Intestinal Transplant team for intestinal transplant. Stanford Medicine Children’s Health created the first pediatric Intestinal Transplant program in Northern California, which is one of three programs on the West Coast.
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