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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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I would like to know if PANS parents have had MRI's done on the kids' brains.

Were any observations made? Any conclusions? Signs of lesions? Causes of seizures determined- after all, tics are mini seizures.....

Did you have to convince insurance to do this? How did you do so?

Please relate any experiences here.

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if I remember correctly, since dd's diagnosis was post-strep neurological issues, our PCP ordered brain scan, AKG, as well as some blood tests. all covered by insurance. nothing unusual was found.

PCP also sent us to a specialist, neurologist in our case.

 

with ds we did not do any of these tests.

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Thanks, this is important to know.

Anyone else?

As far as i'm aware it is very rare to find something on an mri if your child has pandas. My mri's never showed anything. I have heard though that some people with lyme may show scattered white matter abnormalties.

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ds15's MRI only found a sinus infection (ridiculously expensive way to find it) and he went on Amoxycillin for 10 days. Never had a strep swab. Ironically this was all before we had our PANS dx. I recall at the SF PANS Conference discussion that there was a small window to catch any actual basal ganglia swelling, or maybe it was that an FMRI was needed. Apologies for my vague unscientific citing though I'm sure it's on the pandasnetwork.org site, or maybe at NIMH.

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In one of her presentations, Dr. Swedo shows either an MRI or a PET scan (sorry . . . don't recall specifically which) that illustrates a "swelling" or enlargement of the putamen and caudate prior to plasma pheresis and then one after the procedure which shows those parts of the brain have receded to "normal" size.

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There is a very specialized, PET scan using an experimental isotope that has shown inflammation in the putamen and the caudate. Dr. Harry Chugani at Detroit Childrens has developed it for PANDAS. Aside from that, MRI is not commonly done in PANS kids and most anecdotal info says it doesn't find anything.

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I would like to know if PANS parents have had MRI's done on the kids' brains.

Were any observations made? Any conclusions? Signs of lesions? Causes of seizures determined- after all, tics are mini seizures.....

Did you have to convince insurance to do this? How did you do so?

Please relate any experiences here.

 

My daughter just went through IVIG, to treat a PANS diagnosis. Before that, they did an EEG, and MRI, and everything looked just fine in those tests. They thought absence seizures might be a cause, and that was definitely ruled out by the EEG.

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Thought I already posted, DD had a MRI and LP which we are still paying for. Her neurologist was sure there would be something but if revealed nothing remarksble.

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Seizures cannot be seen on MRI. That would have to be done with EEG which is an unusually cheap test in today's medicine. I am not aware that tics are "mini seizures"?? We have had MRI done--nothing significant showed up. It has been reviewed by 4 Neuros and only one picked up that he had "cerebellar verman atrophy with folia looking somewhat generous in the vermis and nowhere else in the brain."

 

 

Current Neuro states that may be true... but, even if so, nothing we can do about it. So, even mild abnormality on MRI may not be useful if there is no treatment. MRI's are most useful, in my opinion, just to rule out that there is not a big, bad, horrible something going on in the brain causing symptoms. More useful to just prove normal brain anatomy than to actually help in treatment.

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