Guess who my "second opinion" local neuro. had dinner with las

[eljomom]

I took dd7 to the original neuro. who I had scheduled with in September, when I had been to the pediatrician twice about the sudden onset of tics, etc.....who had poo-poo'd pandas. This neuro. is a movement disorders specialist. I really don't know why we went, as I was SURE he would say to treat pandas with SSRI's and CBT. Well, maybe he did, looking back. BUT........he was like a man version of L---patient, not rushing us, etc. AND....after explaining my dd to him, when I mentioned pandas, he sort of rolled his eyes, and I thought "&*#@ This, I'm outta here...."

 

Here lies the "holy cow" moment. He said he doesn't believe that pandas is ONLY strep related, that he had just recently treated a kid who was a child of a prominent psychiatrist, who had a sudden onset. They tested for strep, etc....negative. It ended up being myco. p. Kid got antibiotics....cured.

 

Then he said, "guess who i am having dinner with tonight?"---L and S. OH, what I would give to have joined them!!! He said Dr. L had called him and said "let's figure this out" as they are still trying to figure out a "treatment protocol" for the "white paper." Knew about the "secret meeting" and all of it. I was throwing everything at him---Leckman's info, Cunninghams tests. I brought him Leckman's paper (he read it while his intern was examining dd) and said "now this is good stuff...great references....and basically it spells out all sorts of things...but the bottom line is what do we do...we don't exactly know." I also brought him the paper Cunningham sends with her results. As for anti-neuronal antibodies, he said at any given time, any regular person off the street could test and show anti-neuronal antibodies. He also mentioned Harvey Singer--and how he's NOT a believer, as he has not been able to replicate the studies already done.

 

He also said that myco p, strep, and Lyme are implicated in this "syndrome"---which he looks forward to the change in name, as pandas limits people to the strep as onset, and he doesn't believe this to be such a big indicator as other viruses, bacteria can be too. He did look at dd's Igenex results, and the Western Blot from Labcorp, and said we should be "very careful" with Igenex's results. That the FDA had been at their door a couple times this year, etc.

 

Also said that PEX, IVIG, steroids are not "cures"---that they give relief when kids are severely affected, but it is not a cure, as they could have a setback with whatever illness may trigger it next. Also said to be VERY VERY careful with steroids, that he has seen steroid-induced psychosis, etc....and that the side effects aren't always worth the very temporary effect of the steroids. I asked him if there was reason to believe that if PEX/IVIG were helping severe cases, even temporarily, that maybe doing it before it got severe may arrest it completely. He did not think so.

 

He did say that CBT (and even possibly SSRI---gulp) can really help with the OCD EVEN IF it is pandas....the bottom line is OCD is OCD, regardless of what causes it, and CBT can really give these kids some tools, etc...

 

Not sure any of this is helpful, but I was just relieved that there may some day be another doctor to add to the list of believers. I am seriously thinking of e-mailing him to see what took place at the meeting. He said we are in good hands with L, and we know that, but that treatment really is still a crapshoot until further info. comes out.

 

The funny thing was that he said I was the most well-versed parent he'd ever had come through his doors....and I don't say that to toot my own horn, but to toot EVERY PARENT on this forum's horn, as I know any one of you all would have had the same response by him. Docs are so hard on "the forum" but I credit it with everything I know, or as a catalyst to finding out more....so thank YOU all.

 

Will let you know if I manage to pull some info. from the dinner

Edited January 21, 2011 by eljomom

[Phasmid]

OMG! WOW!!! Thanks for this!!!!

[thereishope]

The small world of PANDAS, doctors, and understanding is expanding and getting bigger...finally. Thank you for sharing!

[GraceUnderPressure]

What is Leckman's paper?

 

P.S. I could not have done even half as good a job - thank you so much for being such a great advocate on behalf of all of our families!!!

[browneyesmom]

Great! Thanks for the update! Let's hope it continues to spread!

[eljomom]

GraceUnderPressure: Leckman, Murphy and Kirvan (?) just wrote a paper---it's on pandasnetwork.com. VERY well-written and covers a lot of great info. Definitely something to bring to any doc you might want to educate:)

 

I don't know if I really left with anything profound, other than I feel less "rushed" to get to IVIG...that I'm not missing a "CURE" per se, although I have heard of a few cases where just abx or abx/steroids were a cure. But I think if it's been going on LOOOONg then we've probably missed the window of opportunity.

 

Will keep you posted if I get the courage to e-mail this doc and get the scoop:)

[smartyjones]

Will keep you posted if I get the courage to e-mail this doc and get the scoop:)

 

 

oh please do!! awesome scoop so far! at first, i was wondering if you were talking about Singer. i'm curious and you're in DC area, right? can you PM the dr?

[MomWithOCDSon]

LOVE an "inside scoop!" Makes me feel so in-the-know, which is a rare thing these days!

 

Thanks for taking the time to post!

[butterflymom]

=

Edited February 3, 2016 by tampicc

[GraceUnderPressure]

GraceUnderPressure: Leckman, Murphy and Kirvan (?) just wrote a paper---it's on pandasnetwork.com. VERY well-written and covers a lot of great info. Definitely something to bring to any doc you might want to educate:)

 

I don't know if I really left with anything profound, other than I feel less "rushed" to get to IVIG...that I'm not missing a "CURE" per se, although I have heard of a few cases where just abx or abx/steroids were a cure. But I think if it's been going on LOOOONg then we've probably missed the window of opportunity.

 

Will keep you posted if I get the courage to e-mail this doc and get the scoop:)

I found this one by Murphy, Kurlan & Leckman - is this the one you mean?

The Immunobiology of Tourette’s Disorder, PediatricAutoimmune Neuropsychiatric Disorders Associatedwith Streptococcus, and Related Disorders:A Way Forward

[eljomom]

Yes! That's it--and it's awesome! Sorry, I should have posted link---

By the way---I love your handle---GraceUnderPressure. I sure wish I could say the same. I'm more of FreakUnderPressure

[lmkmip67]

Can you share your doctor's name and where he practices out of?

[GraceUnderPressure]

Yes! That's it--and it's awesome! Sorry, I should have posted link---

By the way---I love your handle---GraceUnderPressure. I sure wish I could say the same. I'm more of FreakUnderPressure

Thanks, eljomom! I'm going to try to get a copy to my son's neuro. He seems open to the info. I was too new to all this when we saw him back in Sept to talk very intelligently about it, though I did at least give him the NIM statement which did seem to impress him & he thanked me for it. Maybe he's just a good actor, but he did seem sincere, & since he did express interest in hearing back about my efforts, I thought I would go ahead & try.

 

My moniker is just my pun(n)y little joke - my name is Grace and I am definitely under pressure, but sadly I do NOT exhibit grace under pressure - just wish I did! Though I do keep praying for God's grace to help me survive under pressure!

[smartyjones]

hey eljomom -- did you ever hear anything else about that dinner? did you go back to that dr?

 

 

[eljomom]

well, I did call and ask, and he said it was to view some videos of kids' movements to say if it was chorea or tics, or something like both, etc. Nothing miraculous on the pandas front

We did not go back to him, as he said we needed one hand stirring the pot, so to speak. he would have tried abx, but is VERY VERY against trying steroids...said he'd pick IVIG before steroids if he had to pick....