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Honenstly, I really think questions like these should be avoided because no one here has the proper credentials to answer them. Furthermore, the discussion will most likely only present people with teh incorrect information and scare them. You should really just ask a knowledgeable docotor.


Sorry - I've been away from the forum all day and could not respond sooner. Pandas 16 -as always - I so appreciate your thoughts and concerns. I am sure that Peglem has spent many hours researching and trying to understand her daughter's condition - as we all have- and I think she was clear that her idea was just that - her thoughts at this time.


I spoke of the possibility of some long-term changes - not due to an autoimmune attack like we see in rhematic fever - but due to inflammation in the basal ganglia possibly pinching off some small blood vessels and resulting in a loss of some neurons.


My son will soon have an MRI and I started looking into some of the literature on this. I recently read an old PANDAS article by JAY N. GIEDD M.D. , , JUDITH L. RAPOPORT M.D., HENRIETTA L. LEONARD M.D., DANIEL RICHTER B.S., SUSAN E. SWEDO M.D., , entitled: Case Study: Acute Basal Ganglia Enlargement and Obsessive-Compulsive Symptoms in an Adolescent Boy

found in Journal of the American Academy of Child & Adolescent Psychiatry; Volume 35, Issue 7, July 1996, Pages 913-915


You may be familiar with this one as you were likely receiving PANDAS treatment right around this time. It is only a single case study, but it is interesting because they looked at volumetric changes of the basal ganglia before, during, and after plasmapheresis in this boy who was in exacerbation. The basal ganglia clearly was inflamed at the beginning, but then had a dramatic decrease in volume immediately after plasmapherisis, but from what I am reading - I don't think it shrunk back down to what would be considered "average" for a child that age - even after 6 months - indicating some long-term changes.


Also, the authors speculated that inflammation could reduce bloodflow and result in a loss of volume of some brain structures (this is just their educated opinion here - not fact)... as noted below:



The increased size of basal ganglia structures was most pronounced early in the course of illness when the patient had a throat culture that was positive for GABHS. Less dramatic changes were observed during subsequent exacerbations, which occurred in the con- text of negative throat cultures. It is hypothesized that the early volumetric changes might represent inflamma- tory changes and either that later exacerbations were not GABHS-related or that different neurophysiological processes were involved in later exacerbations. Since GABHS status was not documented at the onset of the OCD it is not clear whether the autoimmune mechanisms are related solely to exacerbation of the illness or to the original etiopathogenesis of the disease.

Another consideration in interpreting these findings is the vulnerability of the basal ganglia to vascular effects. Blood supply is provided only by end arteries (rami striati) o f the anterior and medial cerebral arteries, with no reserve provided by collateral circulation. Edema from the inflammatory reaction of the cross- reacting antibodies might cause an initial increase in the size of the structure, with prolonged edema leading to compression of the rami striati and eventual necrosis. Thus, the longer-term effect of prolonged or repeated episodes of inflammation may actually be a decrease in structure size.


I know this is only one case but I found it interesting. I am hoping that Dr. Chugani will publish his results soon - does anyone know if he has anything published yet?


We have so much to learn.


Regarding the article I just cited - I could not find the full text on line, but I was able to obtain a PDF of it. If anyone wants it - just PM your email address and I will send it.

Edited by kimballot
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After reading this thread I have come to the conclusion that I need to get my son on steroids ASAP!!! He had strep in April...did not know until July when

He started having OCD symptoms. Put him on zithromax for one month without any changes ( he has previously had negative rxns to amoxicillin and ceftin).


I guess I was hoping it would resolve on it's own like it did for his brother with autism (took about 6 weeks).


I will call Dr. K's office when it opens in 20 minutes.


Thanks all for sharing what you have learned...it helps me to make tough decisions when I don't know where to turn.

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