Other than the four IVIGs we detail here , below is what we’ve done for the most part for each flare. That being said, we recently (July 2019) decided to stop all supplements and plan to refer to his 23andme testing (as of Aug 2019 we have not yet had the results interpreted) and potentially get some muscle testing done to determine his ideal dosing of each. Also, we want to add the below mentioned supplements back in one at time to see what really works and what he can do without.
PANDAS Pack: this is what the very first PANDAS-knowledge doctor we saw called his list of suggested supplements and vitamins to help reduce inflammation and take the edge of the symptoms while a more permanent treatment plan is created.
When our son was 90 pounds, this is what we gave him:
NAC – 500 mg twice daily
Turmeric (w/ black pepper for absorption) – 500 mg twice daily
Vitamin C – we adhere to this advice about keeping it in your system continually rather than simply taking a vitamin once or twice a day. My son takes it easily mixed in with his water!
-We also give high dose vitamin D (5,000 IU a day) and/or lots of sunshine time!
-We also give him fish oil which is a great anti-inflammatory.
-We also give him 500 mg Quercetin 1-3 times a day, which I learned of through this doctor’s podcast that I love and have linked on other pages of my site!
-We also create a homemade Thieves essential oil hand sanitizer that we use often, especially right after being with friends, before eating out, after leaving a public place, etc (2 ounce amber or cobalt blue glass trigger bottle + 15 drops of Thieves + 1 teaspoon witch hazel + rest water)… I like this over traditional hand sanitizer because it’s from nature and I don’t want to give my child a sense of fear of germs, but rather a “here–squirt this on, it’s good for us and smells good” casual attitude. We have grown more and more (with each ugly flare) diligent to do a awkward but all too important pre-playdate “health check” before hanging out with friends (and the real friends totally understand), and we also diffuse different essential oils just outside his room with door open all night while he sleeps. Frankincense, Tea Tree, and Lavender are our favorites.