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Can a MRI distinguish between PANDAS and traditional OCD


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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?

 

 

 

So WD, has Dr. Chugani been of any assistance with respect to treatment, or is he really just in it for the research?

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I think he would have been helpful with respect to treatment, but we didn't pursue this. At the time we did the PET scan, our son was at his lowest symptom ebb (after 9 months of amoxyl prescribed by our original local LLMD).

 

(Makes ya wonder if the PET scan still showed inflammation even though he was in "mostly remission" at the time, eh? Wonder what it would have shown during the "dark times"?!?)

 

We just did it for confirmation, I guess, and in the hope that it might aid research that could benefit other kids in the future. Several months later, when our son had his overnight "exorcist syndrome" exacerbation, we were pretty much freaking out... but folks on this forum recommended Dr. K in Chicago as the most experienced doc for PANDAS. Chicago is just as close as Detroit for us, so we went that route.

 

Dr. C has been great in terms of trying to get us in with local ped neuros and in answering e-mail questions, though. And I believe several families on here (Mustang Carole?) have had good experiences with him for treatment of their afflicted kids.

 

 

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?

 

 

 

So WD, has Dr. Chugani been of any assistance with respect to treatment, or is he really just in it for the research?

Edited by Worried Dad
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We were referred to dr Chugani after our inital visit with dr. K. Dr Chugani call this morning with the results. Our son had a normal scan with a note that there was asymetry in volume of the thalamus. We were hoping for some clear evidence, now were just waiting to hear back from Dr k for the next step. I'll keep posting as I find out more.

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Telya- Did your son have the Cunningham test and if so was it in the PANDAS range? Just curious about how the PET scan and Cunningham test might correlate. Was your son in exacerbation when he had the PET scan? We have an appt w/ Dr K in two weeks and an appt w/ Dr Chugani in May.

 

After 5 months of abx, my son is doing much better, although he has started up the eye tics again and still has some ocd, anxiety and intrusive thoughts. We are considering IVIG for our son.

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My son had a CamK of 168, and the PETscan with Dr Chugani last March that showed inflammation in the basil ganglia and thalumus. We became his patients, he recommended IVIG, and wrote the script for us. We have had 2 follow up visits. His research was initially based on the use of PET technology, and he has 2 current PETstudies running at this time to my knowledge. The research study we participated in was based on looking for brain inflammation from auto immune disorders. At the time we saw Dr C, he had treated less than a dozen PANDAS patients with IVIG. He freely admitted this was not his area of expertise (he is an neurosurgeon and world renowned epilepsy guru), but he was kind and compassionate, and took my input and questions from everything I had learned here. Since that time, he has been doing repeat PETscans after IVIG to measure the changes, and treated several more children. These results, I believe, are going to be the breakthrough for this disorder. He has talked with both Dr T and Dr K, and Swedo is aware of his work. He is learning more and more about the disorder and putting himself out there for the PANDAS kids here in Michigan.

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Nicklemamma-

our son was not in exacerbation. We have not had a a cunningham test. we just started treating his PANDAS from a medical point of view. We've spent the last three years in psyc. Offices and 3 hospitalizations. Our son use to have periods of health between each episode, however he never came completely back to us after the episode in march of 2010. Now we have a new normal. He's a complete shut in. Has no friends and has been placed in a theraputic class room at school where he spends the whole day including lunch with his teacher. At least he's going to school now. At his lowest points he would grab a knife to protect himself so we wouldn't take him to school. We just want him to have the life he had before. I wonder sometimes if PANDAS is gone and this is just all the crap left behind. I was really hoping for a clear answer about inflamation so we could pull the trigger on the ivig. Bla bla bla.......

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I am so sorry to read your son is in his current situation. We are looking at the PET scan to help us get insurance approval for IVIG (that's all dependant upon either Dr K or Dr C approving of it). My worry is the PET scan will be normal. My son is definitely not his worst now, after abx. Its been 18 months since his first episode of PANDAS. There were some truly awful days, weeks, months. Things aren't nearly as bad as they were. I totally understand your psych visits. We're still there. We've had a visit to the psych ER, where my son collected himself and appeared just fine and we were questioned like we were child abusers, then he was sent home. This was before we knew about PANDAS. My heart goes out to you and I hope you find the treatment that will get your son back to the life he once had.

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The PET scan results are in. NORMAL! I so badly wanted to hear that the inflamation was there. The only comment was that his Thalamus was asymetrical and the right side had a higher volume. Next step is a steroid burst with Dr. K. More and more I am begining to think my son's sever anxiety is just the crap left over after 3 1/2 years of dealing with PANDAS episodes.

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Wornoutmomma- sorry for the late reply, no explanation or indication that it was a concern about the asymetry, just noted it in the report. Dr. K read the report too and didn't say anything about it either. I think it's ok because the volume was still in the normal range.

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My daughter has an MRI scheduled for next Wed., and I am worried about her being able to stay still long enough during the procedure. The neurologist does not want to sedate her, which we do not want either. I am just wondering how your experiences were? My daughter does shake her head a bit.

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My older daughter, age 10, did fine. The MRI was about 20 minutes and is a little intimidating looking, so if you could prep her that would be helpful- she had the choice to be sedated or not.

 

My younger one, age 7, took one look at the machine and chose sedation. There is NO way, especially during pandas episode, that she could go into that machine, with me out of the room, absolutely no way. The sedation was completely fine.

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DCMom - wow - 2 kids for an MRI at once...I can't even imagine...

Did they show anything to help you with diagnosis?

 

My older daughter, age 10, did fine. The MRI was about 20 minutes and is a little intimidating looking, so if you could prep her that would be helpful- she had the choice to be sedated or not.

 

My younger one, age 7, took one look at the machine and chose sedation. There is NO way, especially during pandas episode, that she could go into that machine, with me out of the room, absolutely no way. The sedation was completely fine.

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Something that helped my son with his first MRI (he was 7 at the time) was showing him pictures of the MRI machine in advance of going for the test. We looked at images online and talked about how it would be taking pictures of his brain. For this first MRI we had the option of sedation if it would have been needed but he did not need it. He was able to wear special goggles that he could watch a movie on and that kept him relaxed and still. I'm not sure if he would have been able to be that still without the movie though. For the MRI he had about 10 days ago we did not have the option of sedation (different facility.) He did watch a movie again, but he was coming off an exacerbation and it was harder for him to be totally still. He did fine for the first half but then was a little fidgety during the second half. The tech had him shake his hands and feet in between images to get the wigglies out, but towards the end we did opt to put the restraints on his arms and legs, very lightly, just as a reminder to hold still. My husband and I also stood next to him and held his hands as another reminder to be still. For both of his MRI's we were able to be in the room with him. Ask if that is an option at the facility you will be using. That might help your dd be more calm/relaxed. At times the tech seemed a bit annoyed that my ds was fidgety, and she assumed it was a tic. Before we finished the test she sent the images to the radiologist to make sure he could read them, even with the little bit of movement going on, and he could.

 

 

My daughter has an MRI scheduled for next Wed., and I am worried about her being able to stay still long enough during the procedure. The neurologist does not want to sedate her, which we do not want either. I am just wondering how your experiences were? My daughter does shake her head a bit.

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