I have written about poop in the past. Unfortunately one of the symptoms of Sanfilippo is diarrhea. We have had some incredible messes on our hands in the past. Quite literally. We have left poo covered clothes in rest areas, amusement parks, along the sides of roads, the National Mall, restaurants, birthday parties, parking lots. (I am fairly confident people tell stories of our family at the National Book Festival a number of years ago. Matt was carrying Wavey on his shoulders when the unimaginable happened. I chastised the people behind them in line to meet Elmo. How can you not tell someone there is poo dripping down their back?!?!) We always carried spare spare clothes, strollers and car seats were covered with water proof liners and towels. (Nothing worse then a poo covered car seat in the middle of no where on a long drive.) The threat of a major blow out has kept us from going places and caused us to leave early. Poop has controlled us.
Then a reprieve. Both kids seemed to be in a GI holding pattern. No major issues. Everything felt controllable.
Constipation has reared its ugly head. Moms of older children with Sanfilippo told me that constipation was worse. I didn't believe them. I do now. My poor sweet Wavey is struggling. This is very common for our kids as they get older. Their little systems begin to slow down and unfortunately the GI tract not exempt.
Diarrhea was a mess, but it caused no pain. The same cannot be said for constipation.