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mountainmom

Cause of uptick in symptoms?

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My DS (7) has been on antibiotics (Zithromax & Malarone) since the end of August for Lyme, Bartonella, Babesia and PANS. Symptoms began in January of 2014.  Though he wasn't in a flare when we began treatment, he had never entirely recovered from the last one (January-May of 2017). He has flared each January since 2014. The changes I saw from the antibiotics were almost immediate. He was  focused, could remember words, began sleeping through some nights, was happy again for the first time in about a year.

However, lately he has had an uptick in symptoms: anxiety, lack of focus, nightmares, nightwaking, ADHD symptoms,  forgetfulness, etc. it isn't a full flare, but definitely an uptick. 

I'm sharing in the hope that someone with more experience might see something (or know something) that I might be missing. 

There is a lot of stuff going around at school, including strep, though I haven't been able to connect his flares to Strep in the past- though it's possible. This is very reminiscent of a similar uptick I saw last year before his worst flare last January and I'm terrified that we are on the same path- antibiotics or not.

Please let me know if you have any suggestions for things I might be missing, things we should check for, etc.

Thank you. So grateful for the wealth of knowledge here, and the support.

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Unfortunately, I think that with our kids, particularly once the autoimmune reaction is set off to the extent that we discover PANDAS/PANs to begin with, any number of things can trigger an "uptick" or a flare:  allergies, stresses, lack of sleep, viruses, bacterial infections, etc.  From our experience and reading through some of the research, my understanding (and theory) goes something like this:  autoimmune response is, at least in part, inflammation.  Inflammation, particularly of the blood brain barrier (BBB), can give birth to all sorts of physical and mental responses as an inflamed BBB does not function as it is intended; an inflamed BBB becomes more porous, letting antibodies and other materials in that belong out, and possibly allowing some substances (neurotransmitters like serotonin) out when they should stay in.  In our experience, it can take a while to get off that merry-go-round -- to calm things down sufficiently to the extent that the BBB returns to full health and proper function, and the brain is once again insulated against continued antibody onslaught and/or loss of helpful neurotransmitters, etc.

So, all that's to say that I would do whatever I could to calm that inflammatory response:  ibuprofen, curcumin, Omega's, exercise, regular and proper-length sleep, etc.  Between that, the abx and good old-fashioned time, hopefully, things will settle out and get less volatile.

Best to you and yours!

Edited by MomWithOCDSon

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Thank you so much for your response. I'm understanding more and more; but it's slow. It's just so much to take in. Another question- how do you figure out what more nuanced triggers there are- allergies, etc? Or, does time and calming the immune system alleviate these?

Thanks again!

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    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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