Re: Investigating PANDAS

[Guest guest]

My son was diagnosed with PANDAS nearly 2 years ago, but we recently saw an

immunologist as we are going to pursue IVIG treatment for him. The immunologist

ran a number of tests and I don't have all of them handy, but the ones I

remember are:

ASO titer levels

Anti DNase B titer levels

Lyme

Mycoplasma

Pneumococcal titers

The ASO and Anti-DNase B titers check for the presence of strep antibodies. ASO

levels show a recent (in the last 1-4 weeks) infection, Anti DNase B can show

evidence of an infection in the past 3 weeks-6 months. Neither test is a test

for PANDAS. A lack of a rise in these levels should mean nothing. it's like the

police looking for a broken window as evidence of a robbery. A broken window

indicates a possible robbery. But no broken window doesn't mean you haven't been

robbed. 37% of kids won't show an increase in titer levels. It's just one piece

of evidence.

Always test for Lyme, preferrably at an Ingenex lab. Other labs don't produce as

reliable results. Lyme too can cause neuropsychiatric symptoms that are similar

to PANDAS.

Mycoplasma is another bacteria that might trigger PANDAS - there is much debate

in the community about whether it has to be strep-triggered and many would like

to see the definition expanded.

Pnuemococcal titers will show whether your child produces an adequate response

to the 14 pneumonia strains he was vaccinated against as a baby. My son failed

to produce antibodies to 13 out of the 14 strains, showing he's immunodeficient

against these bacteria - his body doesn't adequately fight them. Pneumonia

bacteria are in the Group A strep family and are among the hundreds of strains

that can trigger PANDAS.

You should do a brief bullet list of illness history and symptom history.

You might also find the following sites helpful if you haven't seen them

already:

www.pandasnetwork.org

www.pandasresourcenetwork.org

www.webpediatrics.com - look for the PANDAS sections

and a parent support group-

www.latitudes.org - look for the online PANDAS forum

Some doctors may be willing to try a course of antibiotics. if so, try to get a

21-30 day script as 10 days may not be sufficient to clear an infection.

Amoxicillin and penicillin have not been widely effective in the PANDAS

community. But some doctors balk at having a parent play doctor and ask for

specific antibiotics. if you think you can get away with it, ask for either a

treatment dose of azithromicin or augmentin. these are the most widely

prescribed by the " experts " .

fell free to email me if you have other questions.

best of luck!

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> Can anyone give me some heads up on what tests to suggest??? And maybe some

questions to ask.