Ok this is not a pretty picture (throat of 7 year old boy with autism). Those tonsils are moderately enlarged, red and the soft palate and the uvula (“punching bag”) are swollen as well.  The child had no fevers, no difficulty eating, and apart from a huge increase in obsessive – compulsive behaviors (OCD) his parents didn’t have a clue something was up with his throat.  They Googled OCD and Autism and wound up reading a bunch of posts and articles about PANDAS.

After reading about PANDAS they decided to bring him into see me. PANDAS stands for pediatric autoimmnue–neuropsychiatric-disorder-associated with- Streptococcus. I’ve seen this a lot.  Children with autistic issues seem unusually vulnerable to strep in a way that triggers increased obsessive and compulsive behaviors . Essentially what happens is the body’s immune cells (already on over-drive in autism), see the strep bacteria and mount an immune response.  They make antibodies to the strep bacteria (the way we want them too), but that is where things get off track. Those antibodies cross-react with the brain in way that triggers the OCD type of behaviors.  It can also trigger tics and other odd movements.

 

In his pediatrician’s office he had rapid strep testing – which was negative.  However,  I cultured his throat and it was positive for Group A beta-hemolytic strep (GABHS), the type that causes both typical strep throat, as well as PANDAS.  And we looked for other biomarkers of strep: he had increased ASO and Anti-DNase B markers (immune tests for recent strep exposure).  Most likely he is a carrier – meaning he and the strep bugs have decided it was okay to cohabitate.

His body keeps the bacteria in check by keeping antibodies levels high – but with that protector roll, the antibodies interfere the brain and create his obsessive behaviors.

That creates a treatment dilemma: how do we get the antibodies to strep to go away?  We have some options. We could take his blood out, filter away the antibodies and give it back to him (plasma exchange or plasmaphersis). In reality that won’t happen despite a published study showing it works.  It’s just too invasive for practical application.  We could give him concentrated human antibodies, which would help take out the bad antibodies (IVIG). That works too and is practical but expensive. Without insurance coverage it can run $2500 to $8000 per dose.  Doses can range from one time to monthly depending on the response. But then we have another option. If it works it is low cost, almost always covered by insurance and not too risky.  Dr Swedo and her colleagues at the National Institute of Mental Health – part of NIH – investigated the use of long-term two antibiotics (azithromycin or penicillin).  It takes about 3 months for antibody titers to fall to normal levels and with that the OCD symptoms fade.  Of course we have to deal with keeping the gut happy with the antibiotics – that’s doable but not always easy.

If you give me a choice, I want both antibiotics for long-term stability and IVIG to protect the brain while we get the strep under control. PANDAS can affect any child – not just children with autism.

http://drbradstreet.org/category/autism/page/8/