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July-Fireflies

Autoimmune diet? Has anyone found this made a difference?

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Hi,

In my daily and nightly search on the Internet for more info on the treatment of PANS I keep reading recommendations to try to keep my child on an autoimmune or anti-inflammatory diet.

Has anyone found this helpful?

I'm interested because it seems like something proactive I could actually do while waiting for tests and other treatments that are in the hands of our doctors.

My 16 yr old DS loves sweets, also he is still on Risperidone for tics, although weaning off..this makes him hungry all the time.

Any thoughts?

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Yes, there are a lot of people that not only talk about diet and PANS, some report significant effects with some specifics, like for example, being gluten free.

 

We tried gluten-free for our child, and it didn't seem to help. We went off for a long time (months) and then did several strong cheats - no worsening of symptoms. So we were one of the ones that isn't helped by gluten free - but I still believe the reports of others that do get results.

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We did find some positive results, for everyone in the family (not just our PANDAS DS) with an anti-inflammatory diet. That said, it's not easy because of the restriction on sugars of all kinds (including fructose), wheat/gluten, and even legumes (including peanuts).

 

In the end, we were able to stick to it pretty rigidly for about 9 months, and then most of us loosened up a bit. Still, the regular inclusions and exchanges into our diets of almond butter for peanut butter, dried veggies rather than potato chips, brown rice and/or quinoa pasta rather than whole wheat, and less bread overall, has stuck with us and been beneficial.

 

I felt as though my DS had so much on his plate and so many challenges when he was in the depths of PANDAS, I frankly didn't want to lay anything else on him that would feel like another burden or another thing he couldn't do or couldn't have. But when I made meals that utilized these anti-inflammatory items in exchange for the conventional ones, and they still tasted good and filled him up, it was no big deal for him.

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We did many things to help my child with Pandas. ABX, IVIG, supplements...all helped. Figuring out that an autoimmune was also playing a role in flares was in my opinion the last piece of the puzzle. Yes...an auto-immune diet would be very helpful.. Food allergies also can play a big role. Eliminating these can be very helpful but also very difficult to avoid...as their are trace amounts in many foods. We did food allergy treatment and that helped with that...see my other posts.

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