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Its been a bit since I have posted on here but wanted to give an update. Last I posted we were experimenting with a steroid burst which was highly effective but not sustainable. Recently I heard of something called DAO. Its Diamine Oxidase and is an enzyme that helps the body process histamine. My son has always shown increased tics after eating, going outside, exercise, stress, excitement and infection (of course). We have been infection free for a while now. Titres for all the major infectious triggers are all normal for him. His gut dysbiosis is now in check. But we still struggled with motor tics. Vocals resolved after his gut was healed. Motors remained and were severe at times. I thought about the increase in tics after things like eating and exercise and knew that my son's issues were inflammation related but one day it clicked that the inflammation must be due to histamine. So I started him on the Histame (DAO), 2x a day right before breakfast and dinner. its been a little over a month and 95% of his motor tics are gone. The one that is left is a finger wiggle which is not noticeable at all. No other PANS symptoms to mention since those had resolved with diet changes and the addition of supplements. I just wanted to mention DAO for kids with suspected mast cell activation disorder (MCAD) because this has been miracle for us. We are still on prophylactic abx to keep strep away but have not needed any additional steroid and are planning to come off the Mobic this weekend as well. Hoping this goes well. I will report back soon. The Mobic wasn't really helping that much anyway and I don't want to keep giving it for the sake of giving it. Hope this info can help others with suspected MCAD.
