This portion of my family’s PANS Story focuses on Mold as a trigger for PANS. Before this we had done many treatments for our son's PANS.
After 4 ½ yrs, we had gains but not lasting health. Our LLMD told us that “when patients have been with me for a year and a half and haven’t gotten well, I tell them to look for mold.”
I made my husband help me make 8 trips to the town dump on the hottest day of the year, tossing out junk and damp cardboard from the basement, replacing rugs, getting rid of house plants, testing for mold in every room and his stopping me just before I took a sledgehammer to the sheetrock to look for mold behind the walls. We had disposed of a lot of damp moldy material but saw no improvements so stopped thinking about mold.
Then my son started fifth grade in a different wing of his school building and got markedly better. All PANS symptoms went away. His standardized tests showed that his estimated IQ in 3rd grade had been 93 but was now in 5th grade were 116. His Muscle pain went away; his eyesight improved and is convergence insufficiency corrected itself. He was able to stop antibiotics. At that point we did not realize there was a connection to mold.
In fall of 6th grade, an eye tic came back. We again suspected mold and started cholestyramine, which didn’t help. I went back on my mold hunt and found nothing. In the winter, while changing my son’s sheets, I brushed against his drapes and as they moved away from the window, I saw a sheet of mildew on the glass. The bacteria-laden, warm moisture from the fish tank in his room had condensed onto the ice-cold window from the January temps. A moldy slime was happily growing behind drapes that were kept closed to keep out the cold. I cleaned the windows and in 2 days, the eye tic we’d been fighting for months went away.
In 7th grade, the eye tic came back briefly as the leaves fell and the environment got moldy but it passed without any intervention once the cold weather set in. He made honor roll every quarter and is the healthy, challenging teen I always hoped for. He does get PANDAS symptoms once or twice a year when bacterial infections spread through school, but a course of antibiotics puts things right again. He seems to be outgrowing things.
We always assumed we’d gotten rid of some mold somewhere in the house that summer of mold paranoia. But then my younger daughter, who does not have PANDAS, passed through the same 3rd and 4th grade classrooms where my son had been so close to yet so far away from recovery. After she missed more than 23 days of 3rd grade and more than 30 days of 4th grade by end of the first semester, we did blood work that showed she was suffering from mold exposure. At that point we made the connection between our daughter’s symptoms to mold but also our son’s from the years he attended school there. Our doctor helped us obtain a medical 504 plan and she was removed from that wing of the building. She is slowly regaining her health through the use of cholestyramine, antibiotics for chronic sinusitis and supplements that are neuroprotective. The school remains opposed to air quality testing and insists my daughter was the only one in her class who had health problems. They shrug when I remind them of my son’s experiences and test scores. Yet the school’s state standardized test results are 10-20 points lower than the scores of their sister school‘s on the other side of town, a problem that has plagued this school for years, despite changes in teachers and leadership…quite a coincidence.
What I’ve learned is that it’s imperative to have supportive doctors and supportive networks. But when your child doesn’t follow the script, when things that “should” help don’t help, or don’t help completely, then you have no choice but to keep digging. Listen to the body. If you can’t achieve good health, always keep asking why. Sometimes, there are more than one, or two, or even three obstacles that need to be overcome. Sometimes, your path is more complex, or less traveled, than the other parents who are walking this path with you. It can get really lonely and age you immensely. But when you finally find your truth, your child gets healthy and that reward is priceless.
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