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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

PowPow

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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I would love a copy of the article too, my son continues to deteriorate, pans clinic did autoimmune testing, all came back normal, but he has all symptoms and been diag for years, but no treatments are helping...could you share what treatments are helping your daughter?

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