MRI pics

[fightingmom]

So we had an MRI done today as part of a study my son participate in at the children's psych hospital. We had already inquired about it before our PANDAS diagnosis and the docs don't seem to believe in PANDAS there, so they wanted him anyway. Fine by me, I really wanted the functional MRI and they paid my son a few bucks, so he was excited.

 

I am wading through 160 MRI pics of my son right now, but I found this one and it caught my eye:

https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-ash4/472291_10150971127139325_526479324_12905182_1383773821_o.jpg

 

If you compare this to the MRI image from the PANDAS study, it seems very similar, no? Maybe even more inflamed on my son's pic? Or am I completely not seeing this correctly?

http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-pans.shtml

Edited April 20, 2012 by fightingmom

[Kiera]

Just from what I've read, you can't see Pandas inflammation on MRI, need more specific Spect scans or maybe pet scan?? But Drs order MRI to rule out other causes of symptoms.

[fightingmom]

I didn't have the MRI done for PANDAS (it was a functional 3D MRI done for a research study). However, I have been looking through 160 pics of my sons brain and in the link above referencing Swedo/Leckman it shows the inflammation in the caudate and then the reduced inflammation after IVIG in the area of the brain they believe to be affected in PANDAS. I was just noticing the same in the photo of my son's MRI - his actually seems more inflamed than the one in their study.

Edited April 20, 2012 by fightingmom

[fightingmom]

Oh and while he wouldn't say anything to me, I overhead the Dr. talking to a girl in training about my son's images and he was pointing out to her "areas of edema" on his screen. I tried not to let him know I was listening, but I was...I wonder if edema is always bad, or if everyone has some swelling?

[MomWithOCDSon]

FightingMom --

 

I'm definitely interested in this, but I can't view the caudate nucleus or putamen fully on your image; it seems to fall off the bottom of the page "north" or above those areas when I either view on-line or download.

[fightingmom]

Nancy, that's my fault, I chopped it to show just the part in the image on the link I posted. I am going to make a photobucket account real quick,so I can upload more pics and then post them here.

[fightingmom]

Try this link:

 

http://s1158.photobucket.com/albums/p616/fightingpics/?start=all

[kimballot]

I don't know how you could tell if the caudate nucleus or putamen were enlarged without either having a comparison picture from your child before exacerbation or without knowing what the "typical" volume is for kids his age. I don't know if you can safely compare the MRI pics from kids who may be two different ages and may have been done with different machines etc.

 

I don't believe edema (swelling) in the brain is ever good. If the doctor talked about "areas of edema" then I would assume those are areas of involvement. I would ask the doctor for the MRI report - which they should give you with the pictures. The report will tell you what the radiologist thought and that would let you know what areas are of concern.

[fightingmom]

Kimballot, that's a good point about before and after. I have been comparing patients of same sex and age online (and thought the linked one above was a 15 yo boy, but maybe not) and haven't seen anything that looks like my sons though, but it still may not mean anything. The edema comment was alarming though.

 

There is no MRI report. This was a research study, there was no radiologist and their purposes were different.

Edited April 20, 2012 by fightingmom

[911RN]

I didn't have the MRI done for PANDAS (it was a functional 3D MRI done for a research study). However, I have been looking through 160 pics of my sons brain and in the link above referencing Swedo/Leckman it shows the inflammation in the caudate and then the reduced inflammation after IVIG in the area of the brain they believe to be affected in PANDAS. I was just noticing the same in the photo of my son's MRI - his actually seems more inflamed than the one in their study.

 

I agree- your son's looks even larger and more inflamed than the one in the article?? Edema in the brain anywhere would be an anomaly- I think you are on to something. Keep us posted on report!

[peglem]

Kimballot, that's a good point about before and after. I have been comparing patients of same sex and age online (and thought the linked one above was a 15 yo boy, but maybe not) and haven't seen anything that looks like my sons though, but it still may not mean anything. The edema comment was alarming though.

 

There is no MRI report. This was a research study, there was no radiologist and their purposes were different.

Whoa, I would think ethically, they'd have to tell you if there is something wrong.

[fightingmom]

I didn't have the MRI done for PANDAS (it was a functional 3D MRI done for a research study). However, I have been looking through 160 pics of my sons brain and in the link above referencing Swedo/Leckman it shows the inflammation in the caudate and then the reduced inflammation after IVIG in the area of the brain they believe to be affected in PANDAS. I was just noticing the same in the photo of my son's MRI - his actually seems more inflamed than the one in their study.

I agree- your son's looks even larger and more inflamed than the one in the article?? Edema in the brain anywhere would be an anomaly- I think you are on to something. Keep us posted on report!

 

Thanks, I have two emails out to neuros. Will let you know what I find.

 

Kimballot, that's a good point about before and after. I have been comparing patients of same sex and age online (and thought the linked one above was a 15 yo boy, but maybe not) and haven't seen anything that looks like my sons though, but it still may not mean anything. The edema comment was alarming though. There is no MRI report. This was a research study, there was no radiologist and their purposes were different.

Whoa, I would think ethically, they'd have to tell you if there is something wrong.

 

The issue is the MRI was done by a the psychologist running the research study. He did not say anything to me about the edema thing, I overheard him. I specifically asked him if he saw anything worth noting on the MRI and his reply was carefully worded "from a psychologist perspective there was nothing that jumped out at me, but we don't have a radiologist or neurologist here for our purposes." I have bumped heads with this doc during the few prior visits for this study. He suggested at the first appt my son may be bipolar and when I told him I was convinced of inflammation being an issue he dismissed me. A few weeks ago I told him I disagreed with his bipolar assumption, but he could place him anywhere he wanted as it was his study. He condescendingly asked me what I thought since I "seemed to do a lot of reading" (a$$hole) - so I again told him there was a huge inflammatory component as his behavior changed significantly on advil and steroids. He gave me a blank stare, did not acknowledge what I said, he moved on to something else. So, since I already made it very clear I felt he was wrong and there was an inflammation component to all of this, I don't think there is a shot in h-e-double hockey sticks he was going to say a word to me that made him look wrong.

 

So, here I sit with some really great shots of my sons brain from all three planes, sagital, coronal and transverse and no where to go with them. I think I'm going to have to find a neuro that believes in PANDAS/PANS (that should be fun -- we are going down the lyme path, too as I have positive band 34 and mycoplasma so I need to find a doc who will take insurance and I guess order another MRI or maybe PET). I truly think this is revealing though and wish I could just get someone to peak at it and say YES this means something let's explore further, or not.

[kimballot]

 

The issue is the MRI was done by a the psychologist running the research study. He did not say anything to me about the edema thing, I overheard him. I specifically asked him if he saw anything worth noting on the MRI and his reply was carefully worded "from a psychologist perspective there was nothing that jumped out at me, but we don't have a radiologist or neurologist here for our purposes." I have bumped heads with this doc during the few prior visits for this study. He suggested at the first appt my son may be bipolar and when I told him I was convinced of inflammation being an issue he dismissed me. A few weeks ago I told him I disagreed with his bipolar assumption, but he could place him anywhere he wanted as it was his study. He condescendingly asked me what I thought since I "seemed to do a lot of reading" (a$$hole) - so I again told him there was a huge inflammatory component as his behavior changed significantly on advil and steroids. He gave me a blank stare, did not acknowledge what I said, he moved on to something else. So, since I already made it very clear I felt he was wrong and there was an inflammation component to all of this, I don't think there is a shot in h-e-double hockey sticks he was going to say a word to me that made him look wrong.

 

So, here I sit with some really great shots of my sons brain from all three planes, sagital, coronal and transverse and no where to go with them. I think I'm going to have to find a neuro that believes in PANDAS/PANS (that should be fun -- we are going down the lyme path, too as I have positive band 34 and mycoplasma so I need to find a doc who will take insurance and I guess order another MRI or maybe PET). I truly think this is revealing though and wish I could just get someone to peak at it and say YES this means something let's explore further, or not.

 

Ok...now that I am hearing this whole story I am getting really steamed. Why did this psychologist take pics in the first place - to prove it was NOT PANDAS? You should have a copy of the informed consent you had to sign to allow your child to be in the study. If you do not have a copy, call the psychologist's office and have them send you a copy. Go back and read it. Read what the purpose of the study was. Look under "risks and benefits" ... or something like that. Was one of the benefits that you would receive the pictures of the MRI - with no report? That seems odd to me.

 

Since you have the pictures - could you find a radiologist to read them if you paid him/her to do it? I don't know what your finances are like or what it would cost but it might be worth a phone call or two to find out. A radiologist should be fairly neutral regarding PANDAS, so you would have less convincing to do.

 

If you cannot find a radiologist then I think it is reasonable to look back on that consent form that you signed for your child to be in the study and look where it says "if you have any questions contact...." There should be the primary investigator and then there should be a phone number for the human subjects review board (institutional review board / IRB) that approved the study. Depending on how important your relationship is with the psychologist, you could call the IRB to ask if there is any way you could get written results from the study as you are concerned about your son's health and do not want to ignore problems.

 

Just a few thoughts....

Edited April 22, 2012 by kimballot

[911RN]

Most neurologists and neurosurgeons read their own MRI's independent of the radiologists (they have been trained)...If you have a neuro on board in your son's case---take it to him and get his opinion. Just a thought.

[fightingmom]

Thanks to both of you. The purpose of the research study was for them to see how the brains of children with OCD, ADHD, Anxiety or Bipolar work while they are doing certain things. This was a fMRI and my son was playing special games through part of the MRI. They were monitoring how his brain worked during certain activities of the games. In betwee game sessions (he played the games 6 times) they took several rounds of images. They also took a DNA sample (but we don't get results of that either) and he did an IQ test the last appt (scored pretty high too and that was on a really bad day, he was mid exacerbation, I wonder what he'd score on a good day, but anyway, that's off topic). The only thing they promised us was the images and my son got paid a little over $100 (which I did not know was the case until we arrived at the first appt - but he was excited about that).

 

The CD is actually pretty cool it has a viewing software that allows me to not just look at each individual shot, but I can basically watch as the machine rolled around his brain in motion. It's very cool.

 

We do not have a neuro at the present time. However, about a month ago I emailed with one in Boston. I have been trying to carefully select doctors that are PANDAS friendly and I found his name in the list of speakers at an Autism convention, but he was actually there to speak of PANDAS. I emailed him from his hospital page and he had responded to me, but a little brief as he was out of town. He asked me a few questions which I did respond to, but then never heard back a second time. I emailed him last night the image and am hoping he will respond. I am happy to pay for the appt. I just want someone that won't dismiss me when I get there.

Edited April 22, 2012 by fightingmom