PANDAS: what to do?

[Guest guest]

Does anyone out there know anything about PANDAS?

One of my NT identical twin girls (age 10) has had over a dozen

strep infections since age 7. Her tonsils came out last summer and

she stopped testing positve for strep.

BUT. . . . now she has it again and is behaving different. She is

overly emotional about most things and thinking she is being treated

differently than her siblings. She has not been herself for several

months.

Would long term oil or oregano or something similar help her? If I

understand PANDAS correctly, it is an effect of strep - a bacteria

that they never really got rid of and it effects the ganlia (sp?)

part of the brain, perhaps affecting seretonin levels.

Any light anyone could shed on this would be great. I really miss

my happy go lucky little girl.

THANKS!

KIM

[Guest guest]

> Does anyone out there know anything about PANDAS?

Here are two sites

http://intramural.nimh.nih.gov/research/pdn/web.htm

http://www.enzymestory.com/PANDAS.html

> Would long term oil or oregano or something similar help her?

OLE is an anti-viral, but I am not sure it helps with PANDAS or not.

Check out the links above.

Dana

[Guest guest]

The research articles go back and forth or whether or not PANDAS is

real, but currently, NIH supports that it is real and will have

another paper out on it soon. The controversy comes in trying to

diagnose it. Dana already gave my PANDAS page which lists

the " official " PANDAS site, articles, books, etc.

PANDAS is thought to be the after-effect of strep throat in some

children. A child gets strep throat, antibodies go into action to

fight the strep bacteria, then it is believed the antibodies turn to

fighting a certain part of the brain. Studies have supported that

the basal ganglia have become inflamed during PANDAS symptoms. This

part of the brain controls behaviors associated with PANDAS.

The antibodies can remain long after the strep has been killed. The

antibodies have to run their course, which can take many months.

Presently, doctors usually recommend that the OCD and/or tics from

PANDAS be treated the same as " typical " OCD and tics. This can

involve medication and/or Cognitive Behavior Therapy (CBT). Some

parents prefer to try supplements. Tourette's message boards are

often full of discussion about conventional and alternative

treatments for PANDAS behaviors. NIH research mentions that viruses

can cause PANDAS behaviors to recur, even though it is thought that

strep is the initial culprit. So considering viral treatments could

be helpful. It's also accepted that seasonal allergies can

exacerbate OCD, tics, and oppositional behavior. Here is a link for

Inositol, from the B vitamin family, which some parents have tried

for OCD with some success:

http://www.homestead.com/westsuffolkpsych/Inositol_and_OCD.html

Some parents have found 5-htp to be helpful, while others have

preferred either natural or prescription anti-virals.

Many parents have found their doctors to be ignorant about PANDAS,

but I have found most of the doctors and specialists I've talked to

know about it and find it to be believable. Only two specialists

didn't know about it (I've consulted quite a variety of medical

specialists), but they said from what I told them, it sounded

believable they would be willing to treat my son accordingly. My

son's symptoms, at his worst, matched the long list of specific

behaviors listed in Swedo's research, such as; developed new

separation anxiety (at age ten).

I hope to expand my PANDAS page in a few weeks to include my own list

of questions and the answers I've found so far. At this point, CBT

has been very helpful and I found that once the OCD was dealt with

using CBT, the other oppositional behavior lessened.

Please ask for help anytime.

> Does anyone out there know anything about PANDAS?

>

> One of my NT identical twin girls (age 10) has had over a dozen

> strep infections since age 7. Her tonsils came out last summer and

> she stopped testing positve for strep.

>

> BUT. . . . now she has it again and is behaving different. She is

> overly emotional about most things and thinking she is being

treated

> differently than her siblings. She has not been herself for

several

> months.

>

> Would long term oil or oregano or something similar help her? If I

> understand PANDAS correctly, it is an effect of strep - a bacteria

> that they never really got rid of and it effects the ganlia (sp?)

> part of the brain, perhaps affecting seretonin levels.

>

> Any light anyone could shed on this would be great. I really miss

> my happy go lucky little girl.

>

> THANKS!

>

> KIM