AO Conference

[Fixit]

. Rather, we were referred to therapy. The drugs came about 16 months later when he had an exacerbation/wax that was too powerful for therapy alone (or, seemingly, the ability of his immune system to "self-rebound" at that point in time) to assist him.

 

So now, we're "muddying the waters" for a lot of medical professionals; they thought they knew what tics or OCD "meant" in terms of a diagnosis, and now we're trying to basically undo/revisit 50 years of "secure" diagnostic history. I don't feel bad for the medical community, but I guess I can understand why some of them are balking. Like the guy who first discovered that stomach ulcers are caused by bacteria rather than "stress," we have some misinformation and long-standing "knowledge" to undo.

 

your wording is good....my concern...and i know i need patience, time(but time is running out)...is as you said, when it changes and the ability of the immune system to self-rebound gets shot.....(again ie...sons prior recovery on abx alone and now we are doing every combo immaginable and small blips at best)...and i guess that's why doc k says abx will not hold/work in long run

 

so i too muddy the waters in, ds does not have strep...unless its in the gut...but i think for ds..it may have been myco p this time, but his sytem can not stop,"self-rebound", its in overdrive with no brakes....

 

was anything mentioned in regards to other illnesses, infections(pitands) allergies??? or did they not want to muddy the waters further and its presumed that that will follow???

[MomWithOCDSon]

your wording is good....my concern...and i know i need patience, time(but time is running out)...is as you said, when it changes and the ability of the immune system to self-rebound gets shot.....(again ie...sons prior recovery on abx alone and now we are doing every combo immaginable and small blips at best)...and i guess that's why doc k says abx will not hold/work in long run

 

so i too muddy the waters in, ds does not have strep...unless its in the gut...but i think for ds..it may have been myco p this time, but his sytem can not stop,"self-rebound", its in overdrive with no brakes....

 

was anything mentioned in regards to other illnesses, infections(pitands) allergies??? or did they not want to muddy the waters further and its presumed that that will follow???

 

Yes, pretty much all the presenters, beginning with Swedo herself, acknowledged that once the immune system has been "tripped," subsequent infections and viruses (I don't recall allergies specifically being named, but as they are an immune response, I would assume that would be agreed to, as well) can trigger a fresh PANDAS immune response.

 

I think we need to work hard on making some concise, thoughtful suggestions for the NIMH web site, as suggested by LLM and noted by Vickie. It's no so much that we need to convince Swedo, Cunningham or any of the others who've dedicated themselves to this field; it's that the available literature is so far behind the curve, and we need those sources that our general medical community relies upon (like NIMH) to have the "latest and greatest" information. We have to be prepared, of course, that NIMH will more than likely not be willing to publish what it considers to be "purely anecdotal" at this point, without research substantiating most, if not all, of the info.

[norcalmom]

"Swedo did not get into long-term prognosis or about how aging or even puberty play into PANDAS, except to admit, on the heels of another person's question, that some may grow out of it, "we just don't know." Here're the key "new" points I took from Swedo's talk:"

 

How can that be? They jsut competed an 8 year study (originally scheduled to complete in August) that follows OCD and pandas subset for 8 years, meeting with 70+ kids multiple times per year. Maybe not enough of the kids were pandas.

 

http://www.clinicaltrials.gov/ct2/show/NCT...NDAS&rank=3

 

I would imagine they updated the completion date of the study (I checked this less than a month ago - it was August) so they could present findings at AO. Did anyone there happen to hear when this study will be published?

[MomWithOCDSon]

"Swedo did not get into long-term prognosis or about how aging or even puberty play into PANDAS, except to admit, on the heels of another person's question, that some may grow out of it, "we just don't know." Here're the key "new" points I took from Swedo's talk:"

 

How can that be? They jsut competed an 8 year study (originally scheduled to complete in August) that follows OCD and pandas subset for 8 years, meeting with 70+ kids multiple times per year. Maybe not enough of the kids were pandas.

 

http://www.clinicaltrials.gov/ct2/show/NCT...NDAS&rank=3

 

I would imagine they updated the completion date of the study (I checked this less than a month ago - it was August) so they could present findings at AO. Did anyone there happen to hear when this study will be published?

 

Good question. And one, unfortunately, no one was able to ask because the session ran full-length and Dr. Swedo took off immediately following; there was next to no Q&A time. If the eight-year study concluded in May, it's entirely possible she has not yet "sifted through" and compiled all of her findings yet. And she strikes me as a very cautious, detail-oriented researcher who is not going to opine prematurely or speak extemporaneously on a topic such as this. Among other things, her reputation is at stake.

 

LLM, did Swedo indicate when the results of the study would be published, perhaps, during the think tank session? Perhaps that's part of what is to be unveiled in Washington, D.C., at the IOCDF conference?

[LNN]

LLM, did Swedo indicate when the results of the study would be published, perhaps, during the think tank session? Perhaps that's part of what is to be unveiled in Washington, D.C., at the IOCDF conference?

 

No, neither prognosis nor this study were discussed.

Dr Swedo questioned where the 37% of kids not having rising titers came from. So I later emailed her the citation of the Shet article so she could review it.

 

The other thing she emphasized aside from medical treatment is the importance of therapy (CBT/ERP) to help the child cope with a current as well as any subsequent episodes. She felt that was a key component of getting the child back to baseline that was often overlooked.

 

But the subject never turned to the longitudinal study.

Edited June 1, 2010 by LLM

[EAMom]

We discussed rising titers and Dr Swedo questioned where the 37% of kids not having rising titers came from. So I later emailed her the citation of the Shet article so she could review it.

 

I'm glad you did that.

[airial95]

This is a HUGE problem for the toddler/preschool/under 5 onset crowd!!!! The range of "within developmental limits" for the symptoms listed for the under 5 kiddos is very broad! Periods of equilibrium and disequilibrium are the norm for this group! If we don't have pediatricians that are constantly on the look out for strep (and how about all those ear infections!)... where's the red flag that isn't going to get brushed off as developmental?

 

I just keep thinking to myself.... if my girl was born today instead of 10 years ago, would she still get missed? You bet she would!!!

 

At this point, I still think the standard has to be PANDAS has to be ruled out prior to an early childhood (6 and under) mental health referal because these criteria lists do nothing to protect our very little ones.

 

 

I'd like to shed some light on the positive. My son is only 2 1/2, diagnosed with PANDAS in January by our plain old family pediatrician. It was the first time we'd ever heard of PANDAS - we hadn't even been searching for an answer outside of "his age" at that point. He diagnosed him based on the abrupt behavioral changes (which he even observed) and an impetigo infection a few months before the outbreak. He did a throat culture - which was negative - but still suspected PANDAS since something like 20% of throat cultures come back negative (esp if the child is a carrier - which he suspects my son may be). He opted to "try" antibiotics to see how he responded - and go from there. Luckily, he responded VERY well and we noticed significant improvement on the abx alone. At this point, we haven't done any blood work on our son, our pediatrician also noted that many of the blood tests ordered for PANDAS also have a high "false" postives/negatives in children as young as my son - so as long as he's responding so well to treatment he doesn't see the need at this point.

 

Our Dr is an older gentleman, and this may sound incredibly age-ist of me, but we were shocked at how much he knew, how much he was also willing to admit he didn't know/was unknown about PANDAS. He's seen and treated several cases, and even his nurse recognized the potential PANDAS dx. For a Dr his age, and at his stage of his career, we are extremely blessed to have one that has stayed so on top of the cutting edge of what's going on.

 

He was the first to admit that diagnosing these things in someone so young is tough (our son has presented with ADHD, OCD and ODD) since all of these things are "developmentally appropriate". And we even had several discussions with him about how to control our son's behavior in the months leading up to our diagnosis - thinking it was just the terrible two's. But ultimately, our son just "wasn't normal."

 

After starting abx in January, we've been on them consistently (with one break last week to see if they were still needed - THEY WERE!) and have almost all of his symptoms under control - with just a little risidual OCD (which is just slightly worse than "normal" for his age) and ADHD (which our Dr says may or may not ultimately be related to the PANDAS). But the ODD, emotional rages, and severe OCD are gone - only rearing their heads for a day or two when exposed to strep. He starts behavior therapy this week to help with the residual OCD and to cope when he "flares up"

 

I wanted to put all of this out there to assure you that there ARE Dr's out there who are paying attention - and the hard work and long roads that many of you have taken before us that are "new" to the club is working! I recognize all of the suffering and struggle many of you must have gone through looking for the dx that fit your children, and eventhough I've been "lucky" to come by an appropriate dx quickly and relatively painlessly (just 4 months from first onset of symptoms) it's mainly because of folks like all of you who have worked so hard to get the word out, and having a Dr who doesn't think that they know everything and is still willing to listen and learn!

 

The word is getting out, and you should all be proud that your efforts have saved at least one family (mine) the pain and heartache of an extended search for an answer. I know I am thankful for all of the insight and knowledge you've all provided not only to me - but to the masses in trying to make our kids voices heard.

[Fixit]

This is a HUGE problem for the toddler/preschool/under 5 onset crowd!!!! The range of "within developmental limits" for the symptoms listed for the under 5 kiddos is very broad! Periods of equilibrium and disequilibrium are the norm for this group! If we don't have pediatricians that are constantly on the look out for strep (and how about all those ear infections!)... where's the red flag that isn't going to get brushed off as developmental?

 

I just keep thinking to myself.... if my girl was born today instead of 10 years ago, would she still get missed? You bet she would!!!

 

At this point, I still think the standard has to be PANDAS has to be ruled out prior to an early childhood (6 and under) mental health referal because these criteria lists do nothing to protect our very little ones.

 

 

I'd like to shed some light on the positive. My son is only 2 1/2, diagnosed with PANDAS in January by our plain old family pediatrician. It was the first time we'd ever heard of PANDAS - we hadn't even been searching for an answer outside of "his age" at that point. He diagnosed him based on the abrupt behavioral changes (which he even observed) and an impetigo infection a few months before the outbreak. He did a throat culture - which was negative - but still suspected PANDAS since something like 20% of throat cultures come back negative (esp if the child is a carrier - which he suspects my son may be). He opted to "try" antibiotics to see how he responded - and go from there. Luckily, he responded VERY well and we noticed significant improvement on the abx alone. At this point, we haven't done any blood work on our son, our pediatrician also noted that many of the blood tests ordered for PANDAS also have a high "false" postives/negatives in children as young as my son - so as long as he's responding so well to treatment he doesn't see the need at this point.

 

Our Dr is an older gentleman, and this may sound incredibly age-ist of me, but we were shocked at how much he knew, how much he was also willing to admit he didn't know/was unknown about PANDAS. He's seen and treated several cases, and even his nurse recognized the potential PANDAS dx. For a Dr his age, and at his stage of his career, we are extremely blessed to have one that has stayed so on top of the cutting edge of what's going on.

 

He was the first to admit that diagnosing these things in someone so young is tough (our son has presented with ADHD, OCD and ODD) since all of these things are "developmentally appropriate". And we even had several discussions with him about how to control our son's behavior in the months leading up to our diagnosis - thinking it was just the terrible two's. But ultimately, our son just "wasn't normal."

 

After starting abx in January, we've been on them consistently (with one break last week to see if they were still needed - THEY WERE!) and have almost all of his symptoms under control - with just a little risidual OCD (which is just slightly worse than "normal" for his age) and ADHD (which our Dr says may or may not ultimately be related to the PANDAS). But the ODD, emotional rages, and severe OCD are gone - only rearing their heads for a day or two when exposed to strep. He starts behavior therapy this week to help with the residual OCD and to cope when he "flares up"

 

I wanted to put all of this out there to assure you that there ARE Dr's out there who are paying attention - and the hard work and long roads that many of you have taken before us that are "new" to the club is working! I recognize all of the suffering and struggle many of you must have gone through looking for the dx that fit your children, and eventhough I've been "lucky" to come by an appropriate dx quickly and relatively painlessly (just 4 months from first onset of symptoms) it's mainly because of folks like all of you who have worked so hard to get the word out, and having a Dr who doesn't think that they know everything and is still willing to listen and learn!

 

The word is getting out, and you should all be proud that your efforts have saved at least one family (mine) the pain and heartache of an extended search for an answer. I know I am thankful for all of the insight and knowledge you've all provided not only to me - but to the masses in trying to make our kids voices heard.

 

You are very fortunate...........jealous....

[airial95]

Wasn't trying to make anyone jealous, just wanted to point out the good things that are happening that you may not have heard of!