Your child’s primary physician can assess and manage GI problems when they first start. A gastroenterologist will consider more complex causes if problems continue. Occupational therapists or speech therapists can assess eating by mouth and swallowing issues. A radiologist can assess swallowing. A dietician makes nutritional recommendations. Complex care and palliative care clinicians bring expertise in causes of GI symptoms that are due to the altered nervous system.
Gastrointestinal
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Children with SNI can have ongoing and/or sudden gastrointestinal (GI) problems. They will likely benefit from assistance in maintaining predictable bowel movements, and may have gastroesophageal reflux disease (GERD) more commonly called acid reflux. Sometimes medical treatments can help with symptoms. Other times there may be problems that continue despite treatments. It is important to recognize as the brain changes, so will your child’s ability to digest food and process signals like pain from the GI organs.
Adapting to Diagnosis
Collecting information, care and support as issues emerge for your child and your journey begins.
Building Strengths
Maximizing your child’s core skills and family resiliency to develop a foundation for the journey.
Adjusting to Changes
Making decisions and adapting to your child’s evolving baseline throughout the journey.
Navigating Decline
Re-orienting goals and finding support alongside declines in your child’s condition, preparing you for the end of your child’s journey.
Present in Some Children
Pancreatitis
Pancreatitis occurs when the pancreas, an organ that makes enzymes to digest food, becomes inflamed. This can occur due to trauma to the abdomen, genetic diseases, gallstones or as a side effect of some medications. A child with SNI may also develop pancreatitis if the brain does not regulate their body temperature and it remains severely low for many hours. (See Hypothermia)
Gallstones
Gallstones are hardened deposits of digestive fluid. They may be more common in children with feeding tubes, though this remains unclear, and are known to be common in children requiring nutrition through an intravenous line.
Stomach and Esophageal Ulcers
An ulcer is a breakdown in the normal protective layer of the stomach or esophagus (the tube that connects from the mouth to the stomach). When the protective layer breaks down, stomach acid can irritate the exposed tissue and cause pain.