autoimmune firestorm in the brain -- from a NYT article

[pr40]

This is quote

"But as antibodies specific to tissues beyond the gut have come to light, some now suspect that the autoimmune firestorm ignited in the gut may descend on other organs, including the brain. This idea, which remains hypothetical, has gained traction during a time of progress in understanding autoimmune diseases of the central nervous system.

At the Mayo Clinic in Rochester, Minn., a center of research on neurological autoimmunity, patients with autoimmune epilepsy, dementia and other recently described autoimmune disorders are frequently “cured” with immunotherapy. That usually involves some combination of steroidal immune-suppressants, intravenous immunoglobulin-G, which consists of antibodies from donors, and plasmapheresis, a procedure that removes antibodies from the blood."

full article is at http://www.nytimes.com/2014/10/12/opinion/sunday/can-celiac-disease-affect-the-brain.html

not that we did not know this already. but it is good to see it recognized in NYT. and it is good to see that they recognize that IVIG and other forms of immunotherapy help.

my takeaway is that we, parents, should also focus on the fact that PANDAS/PANS is an auto-immune condition and try to do everything to minimize the "storm".

[PowPow]

Yes. Yes. Yes.

thank you, pr40

[JakeTyler]

This article is about celiac and gluten and the gut brain connection. Does this mean PANDAS kids may have gluten intolerance? What is everyone's experience with this? Do many of you go that route with diets? Did it make any changes for the better in regards to PANDAS symptoms?

[nicklemama]

Some PANDAS kids may have celiac or gluten intolerance but they all do not. My son has been tested and he's negative.

[PowPow]

Mine do not have any gluten issues, either. I am just so glad to see more encouragment toward looking for autoimmunity with these symptoms!

[pr40]

on going gluten free -- this is the thing, if you are celiac you HAVE to do it or you are sick.

If you are not celiac, then, I think, if you have neurological symptoms, you ought to try it. this because there is not test that can tell you that trying is NOT going to have an effect. and only trying it, you will know if it does or does not help.

after going gluten free, we also went dairy and chocolate and nightshades free. we tried going back but had exacerbation right away on each. we will try them again in a few months.

there are many things that negatively influence the immune system and create a "storm". getting rid of them temporarily weakens the storm .

[qannie47]

Wonderful article pr40. Btw, you helped me months ago get started on gluten/dairy/egg free. Thank you. My son is doing wonderful. ALL of his symptoms have gone away 100% consistently now since June. Even is sensory issues.

 

Also, my Pandas son, whom I let cheat once in awhile because I did not think he had these issues experienced more emotional stability, and more calm/focus once I decided to make him adhere to the diet 100%. In hindsight, I should not be surprised....