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Any abnormal MRI with PANDAS/Trichotillomania?


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I know there are a few with kids who have/had trichotillomania. Wondering if you had MRI and what was outcome? Also, those who had reading OCD (re-reading compulsively), did your child have MRI? Wondering if there have been abnormal MRI's. I am just guessing that if we go to a neurologist, she will want to do MRI.

 

IVIG helped apparently- eyebrows growing in. Only second time he has stopped pulling in five years. Going to neurology consult tomorrow at the urging of our PANDAS doc because my son developed a reading problem (re-reading over and over prior to IVIG, that worsened for short time in first two weeks after infusion). Good news is she has challenged kids of her own (autism) so she will probably be open to the possibility of PANDAS.

 

My son is doing great. But doc wanted us to consult with neuro. after his reading ocd grew worse. He was nervous that we were ignoring a bigger problem. I'm okay with ruling everything out. Even though he is not doing it anymore (stopped two weeks after infusion), he wanted us to follow up. Anthem has refused any more infusions (he only had one for specific immune deficiency).

 

Also, since we lost our doc at UCLA, wondering if the neurologist would be a likely person to take over locally. I'm not certain that we will do additional infusions. If the trich. returns, I will resort to classical pharmaceuticals at this point, as it is not fair to my son to let him go untreated for the trich. any longer as he approaches 8th grade.

 

I don't even know what I'm asking anymore...

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My DS has not had an MRI since his PANDAS diagnosis, but in her presentations, Dr. Swedo puts up an image (sorry, I'm not certain if there is a difference, necessarily between a "brain scan" and an "MRI") of the brain of a boy diagnosed with PANDAS. She uses the image for commenting on the enlarged caudate nucleus (a part of the basal ganglia) found in this boy, and how it shrunk down to normal size again following plasmapheresis.

 

Also, you can Google it, but Dr. Rosenberg at Wayne State University, in his studies regarding pediatric OCD, found that scans of OCD brains revealed higher-than-average glutamate concentrations in certain sections of the brain, also, such as the caudate nucleus. I'm not clear on whether or not there was some sort of special "additive" to his scans, though, that made the tracing of the glutamate possible.

 

Interesting stuff! I'll look forward to hearing from some more parents on this.

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Our ds had an MRI in the early days, which was deemed "unremarkable" by the local docs who analyzed it (although they commented that an "artifact" - tic-like twitching - made it difficult to interpret). Later on, we enrolled in Dr. Harry Chugani's PET scan research study and the PET scan was abnormal, showing inflammation in the basal ganglia (just as predicted with SC or PANDAS).

 

Dr. K told us that the MRI's generally aren't sensitive enough to show the effects of PANDAS in his experience. That's one reason Dr. C prefers the PET scan for kids with these types of symptoms.

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VERY interesting about the PET scan. Thanks! Our new neurologist worked with Chugani at UCLA! She won't do the PET though, as it involves injecting dye and she doesn't like that.

 

Went to the neuro. consult and this doc is REALLY WONDERFUL! Very good with my son (usually our docs have no personality and docs rarely engage and involve the kid!) She has two kids with autism so she knows adversity.

 

The highlight was her telling my poor boy that SHE TOO had trichotillomania as a child and pulled all lashes and brows out! He could see that she has them now, so that's reassuring! She totally agrees with the PANDAS/PITAND diagnosis (poor thing- she read five pages of his history which I brought) and supports continuing IVIG for as long as immunologist wants to do it. AND... she offered to jump into the ring with insurance appeal (ins. paid for one replacement dose, but won't cover more), stating that she is familiar with the literature and says there is enough there to support this therapy. She is going to write a letter as well. Her suggestion was to accept what insurance will cover for the replacement dose, and then I work out a deal with the hospital to pay cash for the remaining amount to bring the dose up to the "high dose" of 1.5 g. if that is what works best. However, my son appears to be doing so well even after just one low dose.

 

She asked, finally, about Lyme! I told her negative by Western Blot and asked if she trusted that. She just sighed...

 

She is ordering MRI just to rule out tumor, vasculitis, or OTHER cause for these neuro. symptoms. She was not concerned really about the reading problem he recently developed (re-reading and stutter) and which resolved, and says that this is OCD.

I know many of us kick ourselves, and we needn't, but it did hurt a little to hear her say, "How could his pediatricians have dismissed chorea! You never dismiss chorea!"

 

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VERY interesting about the PET scan. Thanks! Our new neurologist worked with Chugani at UCLA! She won't do the PET though, as it involves injecting dye and she doesn't like that.

 

Went to the neuro. consult and this doc is REALLY WONDERFUL! Very good with my son (usually our docs have no personality and docs rarely engage and involve the kid!) She has two kids with autism so she knows adversity.

 

The highlight was her telling my poor boy that SHE TOO had trichotillomania as a child and pulled all lashes and brows out! He could see that she has them now, so that's reassuring! She totally agrees with the PANDAS/PITAND diagnosis (poor thing- she read five pages of his history which I brought) and supports continuing IVIG for as long as immunologist wants to do it. AND... she offered to jump into the ring with insurance appeal (ins. paid for one replacement dose, but won't cover more), stating that she is familiar with the literature and says there is enough there to support this therapy. She is going to write a letter as well. Her suggestion was to accept what insurance will cover for the replacement dose, and then I work out a deal with the hospital to pay cash for the remaining amount to bring the dose up to the "high dose" of 1.5 g. if that is what works best. However, my son appears to be doing so well even after just one low dose.

 

She asked, finally, about Lyme! I told her negative by Western Blot and asked if she trusted that. She just sighed...

 

She is ordering MRI just to rule out tumor, vasculitis, or OTHER cause for these neuro. symptoms. She was not concerned really about the reading problem he recently developed (re-reading and stutter) and which resolved, and says that this is OCD.

I know many of us kick ourselves, and we needn't, but it did hurt a little to hear her say, "How could his pediatricians have dismissed chorea! You never dismiss chorea!"

 

 

Phas..great follow up..great find with new neurologist...shw sounds awesome!!!!!

 

what are your thoughts on hd vs ld..it seems like you are getting such a great response..that if you had to go again...well....idk..just seems like that is the right measure for your kid....

 

how far was that for you?

 

I wish you could have picked her brain on the lymes thing...now i am so curious..as you know that is the path we are on....

so you son had nothing marked for the igenex test...

 

as far as kicking self....trying to set one of those pully systems up in my basement...you know the kind with the big boot on the other end!!.....(just realized ds does that as that tic is back in full force..no pullies..just jumps in air to kick self)

 

and the reading thing is gone!!!!...is your ds at 100% then???

 

SSSSOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO happy for you!!!

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Fixit, sorry to hear that the tic is back!!!!!!!!!!!!! What now???

 

I would say that, with eyebrows STARTING to grow back, with academic performance holding steady with B's and A's, no tantrums/rages for long time, fact that he's getting along with friends, haven't gotten any referrals/detentions at school, no compulsive vocalizations while t.v. watching, no echolalia/mimic stuff while watching video/t.v., no reading problems/stutter, eating normally, not much in the way of poopy pants problem (yes, he's 12!), I would have to say that he is now at 99.5%!

 

Great thing this morning, to add to it all, is that he didn't flip out when he found out we were going to yet ANOTHER dr. appointment! I purposely didn't tell him until 6:00 this morning when I woke him up! Prior to treatment, he would have:

 

1). screamed and cursed at me

2). refused to go

3). asked me 100 times on the car ride there what they were "going to do to him"

4). been a major pain in the exam room while waiting for doc to enter, like kicking the trash can, ripping off the table paper, knocking on the walls, etc.

 

Instead, he said, "Oh." He got up, came out with a clean shirt on (okay, I got it out of the closet for him!), asked gently if he could play video game a few minutes, asked for breakfast, quit when I told him to, got in the car, drove the 45 minutes there, talked about unrelated things, read a magazine in the exam room, said hello to doc when she entered, made a joke about being too tired to answer a question, left the office, asked if we could stop for food to eat on way back to school... AND NEVER MENTIONED ANYTHING ABOUT NOT WANTING TO GO TO THE DOCTOR! I freaking couldn't believe it.

 

 

 

 

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Thanks Tampicc,

 

Gosh, I sure hate to hear about another child with this problem. I know the tics are bad, and the ocd is horrible, but a 12 year old who smells like poop... that is just so heartbreaking for us (and for him). I know what you mean about, "...loses ability to process..." and I think you are right on the money. We now know (Dear God, I wish we had been smarter about this and could have made the stupid connection years earlier) that when he is starting to exacerbate, he will have soiling issues. He was doing great until his last illness with influenza A/B or h1n1 (wasn't tested), then had a bad day where he soiled a couple times in a day. I think basal ganglia inflammation causes some sort of disconnect so that he doesn't make the connection between feeling full and needing to go. I too have considered it to be an ocd thing- not able to stop what he is doing and take the time to go. Things are MUCH MUCH better, and this poor boy has dealt with this since age 5 and he is now 12!!!

 

Yes, we had a very brief worsening after the first IVIG- just the first week or so. Then, at end of week 2, all resolved. Have you checked stool for C. diff. toxin? I don't know if this had anything to do with it, but he did have C. diff. colitis. I don't doubt at all that it is probably PANDAS ocd related.

 

Oh... one more thing- have you tried eliminating milk? We think that things are better when he is strictly off milk. Have you tried this?

Will be thinking of you guys! Hang in there!

 

 

Phasmid, that last post is WONDERFUL to read. That is so incredibly awesome. I hope we are that fortunate. Did you have flipping after the low dose? (Sorry, I've read a lot of your posts, but can't remember. . .) We are only 1 wk post and having a rough time, but I am sooooooo glad to hear about your son's progress and the new doc that is helping you.

 

BTW, I've always suspected that my son's encopresis is a PANDAS thing. . .really wondering. It seems to come at the beginning of an exacerbation. . . like he loses the ability to process this, or has some OCD about holding it. . . I don't know. With the flipping this week, we had bad soilings Mon and Tues, and one at school, so I'm thinking this is an indication it IS INDEED a PANDAS thing. I'm really hoping it resolves with treatment.

 

Hope things continue to be good for you.

Edited by Phasmid
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Phasmid -Thats great news!! so happy for you both.

 

I wondering what antibiotics you are on post ivig?

 

BTW - the I've been emailing with the immunologist that you recommended that is now at Stanford - he seems great - I'm going to be making an appointment. THE BEST PART - he has an office IN MY TOWN!!!!

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Yay, Norcalmom! I love him. He's very nice. I will go up there if we need more treatment. My son is on every other day 250mg azithromycin. Seems to keep his sinus infection at bay.

 

 

Phasmid -Thats great news!! so happy for you both.

 

I wondering what antibiotics you are on post ivig?

 

BTW - the I've been emailing with the immunologist that you recommended that is now at Stanford - he seems great - I'm going to be making an appointment. THE BEST PART - he has an office IN MY TOWN!!!!

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