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Can a MRI distinguish between PANDAS and traditional OCD


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I know there has been imaging done on PANDAS kids that shows swelling in the basal gangia. I also know there has been imaging on the brains of people with OCD that shows activity in certain areas of the brain...Would it make sense to get an MRI to help confirm whether you are dealing with traditional OCD or PANDAS?

 

Could it some how show an opening in the BBB?

 

Has anyone on here had their child get an MRI?

 

I am starting to doubt the PANDAS/PITAND diagnosis (in spite of high Cam, positive blood test for strep and response to abx last year). We've been in exacerbation since Nov/Dec and see no sign of it letting up. We've all been tested for strep. Brother had it and has been on 3 different abx since Dec. PANDAS DD8 also tried two additional abx. Waiting for IgeneX results. Next appointment with DR. B a week from Monday.

 

I'm starting to wonder if we should try an SSRI, even though I really don't want to. Doing the ERP isn't really helping much alone.

 

Thanks,

Kara

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I know there has been imaging done on PANDAS kids that shows swelling in the basal gangia. I also know there has been imaging on the brains of people with OCD that shows activity in certain areas of the brain...Would it make sense to get an MRI to help confirm whether you are dealing with traditional OCD or PANDAS?

 

Hey Kara --

 

Well, I'm not a medical professional and our DS14 has had neither an MRI nor a PETscan in the course of his OCD/PANDAS. But I've recently been corresponding with Dr. Rosenberg's office at Wayne State and Dr. Grant at NIMH on the topic of the caudate nucleus, its inflammation (identified by Swedo/Grant in PANDAS), and the collection of glutamate in the caudate nucleus (identified by Rosenberg in pediatric OCD). And the short answer I've gotten so far is no, a brain scan cannot currently identify between PANDAS OCD and "regular OCD." They don't yet know which came first, the chicken or the egg; does inflammation permit the glutamate to collectin the caudate, resulting in OCD behaviors, or does the glutamate collect in the caudate, making it swell, with the OCD behaviors being the result of the inflammation, the glutamate or a combination of the two?

 

I truly think, if we had the answer to that question, we'd be "golden" for at least effectively treating to a subclinical level, if not outright "curing" both PANDAS/PITANDS OCD and "regular OCD" (in quotes because I think it remains to be seen that there's any such distinction).

 

It looks as though we're some time away from distinguishing/determining that causal relationship, though. Dr. Grant is currently involved with a glutamate/riluzole clinical trial, the participants of which may have PANDAS or non-PANDAS OCD as the criteria doesn't exclude either, and he's joining Swedo on the IVIG trial, as well. Meanwhile, Dr. Rosenberg at Wayne State has moved on to examining the role of heredity/genetics in the production of glutamate in the brain. While both of these guys use brain imaging in their studies, no one's seeing discriminating a PANDAS case versus non-PANDAS as a priority as of now.

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My son was supposed to do an MRI but not to diagnose PANDAS, as our neurologist said it is not fine enough to detect those changes. She wanted to rule out other conditions. A PET scan would detect changes, but risk is not worth doing. My son completely freaked out when he saw the MRI machine and had a complete meltdown. We could not get him to go in. We won't be doing any imaging.

 

 

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My ds8 just had an MRI this morning. The ped. neurologist who is treating his PANDAS wanted him to have one because, according to her, sometimes inflammation can be seen, especially right after an exacerbation, which is where we are at now. I can post results when we have them. Not sure how long it will take. He had an MRI 18 months ago for his tremor (we did not know he had PANDAS at that time)--this first MRI was 6 months after what we now know was his first PANDAS episode. Those results were normal, but they weren't looking for inflammation so I don't know if they would have seen that or what. Just not sure how that all works.

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There is a doctor in Detroit, Dr. Chugari, who has been able to detect inflammation in the basal ganglia with a PET scan in some kids with Tourette's, and he is now working with Dr. K and treating PANDAS with Dr. K's IVIG protocol at Detroit Children's Hospital. Dr. K mentioned this to me while we were having our IVIG. He said it is exciting, and might become a definitive test for PANDAS inflammation. I believe Dr. Chugari is doing a research study right now, and the PET scans are free for participation in the study.

 

I also think Dr. Swedo had some images (possibly done by MRI) showing slight inflammation, but it seems to be harder to measure/detect it with MRI.

 

I don't know a lot about either of these scans or the risks, just that Dr. K thought it is very promising.

 

Yes, this guy is affiliated with Dr. Rosenberg's Wayne State team, as well. According to his bio at Children's Hospital, he is predominantly focused on TS, but if he's beginning to use Dr. K.'s protocol, then he's branching out somewhat and probably benefitting the OCD research as a result.

 

Dr. Chugani

 

Dr. Chugani and PET Scans

 

This guy may be a GREAT resource and advocate going forward, especially given his access and areas of interest. But Tampicc, I can't find any reference to any specific trials or research studies he's currently running. If you hear/know anything further, please post! Thanks!

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We just had the pet scan with dr Chugani in Detroit last week. In addition to the scan they did some psyc and neuro testing. We are waiting with baited breath for the results. It will be a major consideration for us in choosing ivig for our son. By the way he was sedated for the test which takes 90 minutes. We were on our way back to Chicago 30 min after the test was over. He had no adverse reactions.

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We just had the pet scan with dr Chugani in Detroit last week. In addition to the scan they did some psyc and neuro testing. We are waiting with baited breath for the results. It will be a major consideration for us in choosing ivig for our son. By the way he was sedated for the test which takes 90 minutes. We were on our way back to Chicago 30 min after the test was over. He had no adverse reactions.

 

This is really interesting; please do keep us posted on the test results.

 

Is this something you decided to do on your own and you sought out Dr. Chugani, or did your doctor/pediatrician suggest it or even make the arrangements on your behalf? Are you actually participating in a formal study of Dr. Chugani's?

 

Thanks for sharing!

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We also did an MRI in our ds's early (pre-diagnosis) days which showed nothing except a sinus infection. We were lucky enough to participate in Dr. Chugani's PET scan research study, which confirmed inflammation in the basal ganglia:

 

 

We live in Michigan (Dr. C's state) but found out about his study via another forum member here. Don't know how widely the PET scan research study has been advertised?

 

 

We just had the pet scan with dr Chugani in Detroit last week. In addition to the scan they did some psyc and neuro testing. We are waiting with baited breath for the results. It will be a major consideration for us in choosing ivig for our son. By the way he was sedated for the test which takes 90 minutes. We were on our way back to Chicago 30 min after the test was over. He had no adverse reactions.

 

This is really interesting; please do keep us posted on the test results.

 

Is this something you decided to do on your own and you sought out Dr. Chugani, or did your doctor/pediatrician suggest it or even make the arrangements on your behalf? Are you actually participating in a formal study of Dr. Chugani's?

 

Thanks for sharing!

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