Reflux and Gastrointestinal issues

Unfortunately Reflux almost always goes hand-in-hand with SLOS, and more often than not, it is severe to the point of projectile vomitting several times a day or more. Sometimes Pyloric Stenosis is to blame and surgery can correct this by opening the pyloris. If not, and the reflux is so severe that the child cannot gain weight, then often a fundoplication is done where the stomach and sphincter are "wrapped" to help prevent the child from vomitting.

In many cases though the reflux and vomitting is caused by allergies, slow gastric emptying, slow motility, or low muscle tone. In these cases it often lessens with an appropriate diet or age as the child's muscles get stronger. Some parents have even noticed that the reflux is not just random, but is instead related to bodily functions such as burping, gas, sneezing, or bowel movents after the first several months. Commonly when SLOS children are ill or have colds, the reflux becomes extreme and meals must be adjusted to be just pedialyte or very thin mixtures.
In addition, many of the children are very gassy and stomach massage can really help the pain and discomfort caused by the gas, which may in turn help with the reflux.

Often medications are used to help keep the reflux in check. Here is a list of some commononly used medications:

• Reglan (aka Metoclopramide)
• Zantac (in some cases hair loss; histamine 2 blocker)
• Prilosec (coughing in some; proton pump inhibitor)
• Pepcid (proton pump inhibitor)
• Trimox
• Erythromicin* (can interact with other meds)
• Zelnorm
• Tagamet (also used for wart treatment in some cases)
• Propulsid (aka Cisasperide, dangerous cardic deaths, no longer available)
• Prevacid (proton pump inhibitor) Comes in various forms: powder, pill or capsule. The company recommends for oral fed children that you get the extended release capsules (usually the 15mg ones) and you open it and sprinkle it into certain foods. Recommended ones are applesauce, yogurt, cottage cheese and pudding. You would mix the capsule with a Tbsp or two of applesauce in the morning and either tube it through the bolus tube, followed by water, or feed it to the child. Then wait 20 minutes and feed breakfast.

Many SLOS children also have g-tubes due to their lack of suck and swallow reflex at birth. Often the gtube site grows granulomas and there are a few medications that can help keep the growth in check:

• Triamcinalone (steroid; stops growth)
• Bactroban (for infections)
• Fucidin
• Flamazine
• Silver Nitrate application typically done at the doctor's office