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Bhakta, Dr. t and Beth Mahoney were awesome. I will post slides when I get them.

 

Big takeaway for me is that abx need to be rotated. Shouldn't stay on one for too long. Looks like we will be switching to something else. Luckily our Dr. Is attending this conference and changing her thoughts on how to treat. She also realizes her limitations and we are also going to start seeing an immunologist that treats for PANS/PANDAS as well.

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Another thing i learned. We need to treat PANDAS before it becomes truly autoimmune in nature. In the early stages the kids build antobodies in response to an infectious trigger. If it goes on too long without treatment, the body starts making antibodies without the infectious trigger. This is when it is condisered autoimmue.

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Thanks @cara. I guess I'd like to know what they mean by "treat early." His slide says antibiotics and rational prophylaxis. In our case DS responded well to antibiotics. When we discontinued them, we had a nice long stretch of "remission." Yet, things came roaring back. So what does he think "treat early" means and for how long? Assume if clear trigger is identified and eradicated prognosis is good - however that does not cure the biologic problem/susceptible immune system. Any thoughts?

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Also, most of his slides are over my head but i can see he is intrigued by the response to motrin, cox2 inhibition. This inflammatory model is being applied to many psychiatric illnesses including bipolar, schizophrenia, depression - responding to cox1 and cox2 inhibition. Did he comment on this?

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Not tha tI am aware of. He may have but I didn't take any notes on that part. I must admit a lot of his slides were over my head too.

 

My son was an antobiotic responder but for some reason is not responding to azithro anymore. His titres are still high and his tics are seemingly getting worse. I know we need a new antibiotic or combination. I am praying that we will hit on the "right" protocol and not have to move on to IVIG. I say this because in the state od GA IVIG is not offered. We would have to travel and my son is completely terrified of needles. He would be traumitized by IVIG. Not to mention the cost. :(

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I want to mention Dr. Niccolai's presentation (I think I spelled her name wrong but she is Sammy's doctor from Saving Sammy). She really pushed Strattera and antipsychocitcs. I think she is a big fan of pharma. I was not impressed and frankly all the other speakers totally contradicted her!! In addition she did not present, she read directly from her slides. It was not well executed at all.

 

My favorite was Dr. Bhakta and Beth Mahoney. Beth is going through a very hard personal situation right now so she was not her usual spitfire self but she spoke so well and talked about how if we ever need to hospitalize our kids, we need to really think about where we take them so we don't end up like Justinia. Unfortunatley, these kids are being taken away from their parents and its becoming more common. It seems completley insane but there are hospitals that like to do these things. We just need to make sure we go to a parent "friendly' hospital if it ever comes to that. Of course I pray that no one on this forum ever has to cross that bridge.

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Thank you so much for posting the link to the power points, cara615! Most of it is totally over my head, but I am trying to sift through Dr. Bhakta's information. Hoping you might be able to clarify something for me.

 

At one point she says to use a diary-free (cow's milk) diet but then later she says to increase glutathione using bioactive whey protein which should come from non-pasteurized, non-industrially produced milk. So does that mean we can keep milk in our diet if it is non-pasteurized and non-industrially produced?

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Excellent question!! We had the same one!! Whey is milk derived. I am not sure what she really meant as it seems condraticting.We are dairy free and increase glutathione by giving our ds NAC. However, she mentioned that NAC should be given 400-500mgs per day and we were giving 1200mgs! i backed down as I don't want to create a situation where his body stops producing glutathione on its own! She said that could be an issue.

 

For us, I wouldn't add when into his diet as I KNOW he has a dairy intolerance from his ALCAT test.

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