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excellent summary of pediatric inflammatory brain disease (AE)


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This may be very helpful for securing some testing from a local doctor, or one not as versed in AE and the like.

It is short (which always helps!) and even has a little flowchart to point out different manifestations and labs to check.

This testing found the cause of my daughter's very, very severe PANS-- which we had been told was:

PANDAS (w/o strep)

LYME

BABESIA

DETOX

SNP (gene) phase I & Phase II issues.

 

 

I know that many of you have found healing from these avenues.

I am very happy for you. For those of you who have not-- I am very afraid you could missing the proverbial "forest for the trees". We were.

Our daughter has a life now and has had it for quite a while.

Please print this and take to your family doctor, local neuro- whoever!

I know at least one main PANDAS doctor is now testing for these things, at least in severe cases.

 

http://journals.lww.com/co-rheumatology/Citation/2014/09000/Pediatric_inflammatory_brain_diseases__a.13.aspx

 

This is the abstract. The full text is linked to the "parents of kids with PANDAS/Pitands" facebook page- but I may be able to send it to you, if you are interested.

Edited by powpow
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Dr. Van Mater and her colleague Dr. William Gallentine (D.O in neurology) have been our daughter's physicians for almost two years. These two work so closely together that when you see one, you typically see the other in clinic. I can't say enough about Dr. Van Mater's professionalism and dedication. Our daughter has one of the most profound and treatment-resistant cases known, so If you have questions about Dr. Van Mater or diagnostics/treatment at Duke, fire away.

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