Navigating Our Way Through Smith-Magenis Syndrome

Our approach to Smith Magenis Syndrome is nothing short of complex. There are many different things we do make sure Gavin’s health is the best it can be. When Gavin was 2, we researched and spoke with parents that were focusing on gut health. At the time we had no idea what that really meant except we knew Gavin’s gut and digestion needed some help. We started him on a gluten and dairy free diet to help bring down his inflammation. What we learned and are still learning, is how strongly connected the gut and the brain are. It took several months but we started to see noticeable changes in his mood, behavior, and digestion.

Two years into this journey we met a doctor that would ultimately change our life and support the path we were on. As we discussed our concerns for Gavin, she immediately wanted to dig deeper into the gut and see what else we were up against. After a variety of tests were completed on Gavin, we figured out that he had so much yeast and bacteria built up in his system that he needed a few temporary medications to help clear them out. We again were amazed at steps forward we were making toward his health and we saw it in all areas, especially sleep. Knowing that bacteria likes to be active between 1 a.m. and 5 a.m. this was really impacting the whole family. As we continued this integrative protocol, his sleep continued to improve. Eventually, we found out a new diagnosis, Smith Magenis Syndrome involves disruptive sleep patterns and he does require low dose sleep aides. But, his sleep would be far worse if we continued to ignore his gut health.