Sunday, December 18, 2011

PANDAS: not always cute

The first image that pops into our mind when we see or hear the word "PANDAS" is the adorable black and white bear that is native to China.


PANDAS also means something completely different and has nothing to do with "cute."  PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus) is the name of a condition that affects many children.  Little is known about the condition except that it normally appears following a child's bout with "strep" -- the bacteria we've all heard of before.

For the kids who have this kind of experience with a "strep" infection, it is a whole different kind of experience.  Described by kids and parents alike as a nightmare, it is one that may plague them for the rest of their lives.

These kids have a sudden onset of OCD (obsessive-compulsive disorder) symptoms, such as tics, panic attacks, and a long list of often terrifying symptoms and experiences.

Since the onset of PANDAS is so sudden, few parents have a clue what has happened to their otherwise sweet tempered child.  Unfortunately few doctors understand this condition, are able to recognize its presence, or know how to treat it.

One of our granddaughters has PANDAS, acquired from a strep infection she got seven years ago.  We've watched her mother's tenacity in trying desperately to understand and learn more about what is going on with her daughter, who -- prior to the first sudden display of symptoms -- was funny, easy-going, and a sweet regular kid.  She is still all of those things, but she's also been through a kind of hell we can only imagine.  She was just twelve.

One of the few books on this subject, which is easy and fascinating to read is:  Saving Sammy by Beth Alison Maloney, who writes about the terrifying journey she made with her own son.

If you have any child in your family, or know of any child who has experienced the sudden onset of OCD symptoms -- and no one seems to have a clue about the cause or the treatment -- please tell them about this book, which is available on-line or can be purchased or ordered at a local book store.



In the seven years that our granddaughter has been struggling with PANDAS, much more has been learned about the condition, primarily because desperate parents have relentlessly sought help for their children.  Support groups are being formed; national conventions are held; more doctors are learning about it and talking about it.

Treatments vary from case to case, but our granddaughter has responded best to large, continual doses of antibiotics.  We've been conditioned to think of the continual administering of antibiotics as a bad thing -- because the body's immune system will become weakened, or they will cease to work when another bacteria or infection strikes.

Practitioners of Chinese Medicine believe the answers lie in diet and ancient treatments that have been around for thousands of years and are still practiced today.  Perhaps the ultimate answer will be some combination of methods and treatments.  Or perhaps each case should be analyzed and treated differently.

We greatly admire the courage of our granddaughter and her parents -- especially her mother -- in finding new ways of dealing with the often unexpected ways this condition has the ability to literally take over their lives.

Symptoms never wait for a convenient or practical time to dominate the lives of the people involved, and the variety and intensity of those symptoms continually surprise them all.

In addition to finding information about PANDAS on the Internet, a December 3, 2011, article in the Wall Street Journal contains much up-to-date information on this condition.  A copy of the article, in its entirety, can be read HERE

Some fascinating articles on how Chinese healing approaches might be used for treating kids with PANDAS or similar issues are included below.  At a recent conference in Houston about conditions such as these, various people referred to increasing awareness of the importance of diet in dealing with symptoms experienced by affected children.

It appears there is a definite coming together of 3,000-year-old Chinese wisdom and modern medical knowledge.  Information about the Chinese aspects of healing and diet can be found at the following links:  HERBAL and DIET

The important thing, and my whole reason for writing on this subject today, is to enable readers to share this information with anyone they suspect may be struggling with this little understood condition.

It's all about the possibility of helping just one person.  

6 comments:

  1. Thanks for the good Chinese Med coverage I think what you said about each case needing to be analyzed and treated differently is critical, and is the gift of the medicine.

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  2. The human body is a fascinating thing, although sometimes that fascination is as much in fear as in awe. Some bodies are apparently immune to invasion by germs or bacteria, and others react so violently, they threaten to destroy themselves.

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  3. What an ordeal. My thoughts and prayers are with your family. I had not heard of this condition before. Thank you for bringing it to light. There is so much to be learned, even in the medical profession where so often assumptions are made in diagnosing, leading to no progress in healing or even to harm to patients as a result of a lack of knowledge. A multi-disciplinary, non-traditional approach can be very effective, but is often difficult to implement due to lack of information.

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  4. Oh how tough! I ma just glad your granddaughter was diagnosed. My mother has been struggling with health issues this year and now they think it is autoimmune but don't know in what ways, so there is not much treatment for her. Best of luck to all of you!

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  5. Oh my gosh! Bless her heart! I keep hearing more and more about the strangest viruses and diseases cropping up. Sending light and love their way that they will find the answers.
    Hugs!

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  6. Thank you for this. I had no idea that OCD could have a bacterial cause.

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