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Your child’s primary physician can assess problems when they start and manage common problems such as acid reflux. A gastroenterologist will consider more complex causes when GI problems continue. A dietician makes nutritional recommendations. Complex care and palliative care clinicians can bring expertise in causes of symptoms that are due to the altered nervous system and help assess how they may be related to one another.
Reflux and Vomiting
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Gastroesophageal reflux disease (GERD), more commonly called acid reflux, is a common cause of discomfort for children with SNI and occurs when contents from the stomach (including stomach acid) travel up into the esophagus, causing irritation. Reflux is more common in children who cannot sit upright or stand. Reflux and vomiting can also occur when the stomach is not receiving signals from the brain to move food into the intestines.
ESP Acid Reflux
Gastroesophageal reflux disease (GERD) occurs when stomach contents flow into the esophagus, the tube that connects the mouth to the stomach. This content contains stomach acid, which can irritate the lining of the stomach and the esophagus. GERD can cause pain and vomiting in children with SNI. A dentist also might notice signs of GERD when looking at your child’s teeth and gums. At some point, a gastroenterologist might recommend an upper endoscopy, a test where a clinician examines the lining of the GI tract with a tiny camera while the patient is sedated.
Treatment for GERD is often begun when it is suspected, not based on a test. Treatment starts with medications that decrease stomach acid secretion and sometimes medications that help the stomach empty. If the medications improve GI pain/symptoms, then no further testing is required to suggest GERD as the cause.
If your child is fed through a feeding tube, the type of tube used may be changed from one that feeds into the stomach to one that feeds directly into the intestines. This is often called post-pyloric feeding and can help because the feeding enters the GI system past the pylorus, the natural valve that keeps intestinal contents from re-entering the stomach and then moving upwards into the esophagus.
Vomiting
Vomiting can be a challenging symptom because of the mess it creates and its unpredictability. Vomiting can happen with common viruses (AKA stomach flu) or can be a sign of infection happening elsewhere in the body. Vomiting that happens without any signs of infection can be due to GERD or trouble with moving the bowels forward, which can be seen with dysmotility and significant constipation. Vomiting might persist in some children with SNI after treating GERD and other problems, because the vomiting reflex involves pathways between the gut and the brain. These pathways have receptors that, if triggered, cause a sensation of being sick to the stomach, retching and/or vomiting. Medications can block these receptors to stop or lessen recurrent vomiting and retching.
When vomiting is recurrent in children who are fed by a feeding tube, the medical team can develop a care plan that outlines what can be tried at home. During a vomiting event, this might include pausing or slowing the rate of formula, giving an electrolyte solution (like Pedialyte) instead of the normal formula via the feeding tube, venting (releasing gas from) the stomach, and/or maintaining a quiet, calm environment.
ESP At one phase in your child’s life it might be possible, with treatment, to have very few GI symptoms. At another phase, the continued decline of the nervous system may mean accepting some symptoms. Witnessing any discomfort in your child can be hard, and vomiting is unpleasant for everyone. Unfortunately, no treatment can actually fix symptoms that are generated by the nervous system. Having a problem without a cure then involves decisions about what balance of treatment and symptoms you and your child can tolerate. If your child enjoys most of their time, more medication may not make the symptoms much better and might add more side effects. Be confident in your ability to figure this out, and seek those who can support you in complex decision-making.