Dr. K's presentation at OCF Conference

[NMom]

Just thought I would add my thoughts on all of the latest buzz today. Our ds10 had very minor illness last year and then began to show up at my classroom with weird crying and confessions. Thought he may be taking his First Communion Catholic classes on confession a bit too serious. Was very strange and I teach special needs children! I contacted school support services and we were all a bit baffled at the strangeness. After about 6 weeks of keeping things low stress…it went away. Christmas 2009 he was sick with a small 2 day fever. (Never went to doctor) Woke up full blown, over night OCD! Washed hands until they bled, and then a few days later some teachers came running into my class saying that Hunter was walking in circles in the hall and repeating “right or left, right or left?” The teachers said that they helped him to join his class in the lunchroom and that he was unresponsive to them. I ran to the cafeteria to find him standing in front of his lunch table like a zombie lifting his right leg and then his left leg over and over. The 400 other 4th graders were watching, pointing, and his teacher’s mouth was wide open. I tried to get him to sit and eat but he did not want to touch his food. We kept him from school while waiting to get an appointment with a psychologist, neurologist, psychiatrist,….he then began to walk around the house with his face against the walls. The face tics began and then the uncontrollable full body movements. I have carefully documented everyday for 5 months. (kind of second nature as that is some of what I do for a living on a daily basis.) Neurologist mentioned PANDAS but did not believe. We did our own research and got on the right track with help from our pediatrician. I could go on and on with this story and list all the doctors that did not believe or refused to listen or tried to educate me and set me straight. I could list for days all the negatives with this very cruel illness. We are still not completely healed and will now attend a private school next year. (was a gifted straight A student)

 

I share this to make a few points:

 

#1) Although I did not find out about PANDAS through Beth M., I did see Sammy on TV and it looked all too familiar and helped me to feel confident that this is what our son had. Having said that, I am fairly sure that for most others this is NOT the case. If I would have seen Lauren on the show with her sneezing tic, I would not have made the connection for this being our illness.

Point is….We all have different stories and they are all important. So I really don’t have an opinion one way or other about Beth personally (never met her). I am glad for ANYONE to get the spotlight and word out on this illness.

 

#2) we did contact Dr. N (that helped Sammy) and she conferenced with our Pediatrician. Was the first of many, many, many doctors that I actually heard speak of PANDAS as if it were indeed real. She was kind, confident, and helpful. She cost $94.00 for a phone conference. From there our doctor spoke with another doctor and now there you have it….two boys being helped though high dose long term antibiotic treatment.

 

#3) Dr. K says that “ALL” patients will become non responders; I have called to ask what he means….a phone conference is $500. So, do I just throw in the towel on the antibiotics that have helped him become 95% better and go for the IVIG treatment because he says it is the only option? Maybe he does not know about the kids that are getting well with antibiotics because they do not seek further help. (and who is tracking anyway!?) If antibiotics no longer work for our son, we will be on the next plane to Chicago to meet with this wonderful man and go for the IVIG. However, seems like many go for IVIG 3 and 4 times. (so do they become non responders to IVIG…don’t know how that works)

 

#4) I personally like that there are a few different options being discussed for treatment. What if there were only one and your child did not respond or improve with this one treatment!!! Where is the hope in that? All of our children seem to have many different and similar things going on and respond to many different treatments. I just wish that Dr. K didn’t have the word “ALL” in the statement about antibiotics. Sounds so definite and absolute. What about Jamie (not only Sammy)?

 

#5) How is anyone even knowing what our kids are all responding to? I’m so grateful and glad that the doctors are all communicating with each other, but who is communicating with us? We are a very bright group of parents (and a teenager!) with a lot to offer. It is odd that many, many of us are dealing with this in areas that do not have any PANDAS doctors, so we are not being tracked or kept up with. The doctors (interns) should join this forum and run surveys on us all. I elect BUSTER to be our liaison.

 

My final thought is that as much negative as we get from doctors, schools, and all the others, there is no room for anything but support of each other in our small circle of understanding supporters.

 

Vickie and Jag10 loved your posts!

 

Well said!

[fuelforall]

Yes and what you are saying Mom, is exactly what Dr K was hoping to come out of the conference with.

That is what I am hoping will be a "big announcement".... soon.

 

I'm fervently hoping the conference at NIMH resulted in some concensus that will not only update the information the NIMH puts out regarding PANDAS, but also help families entirely new to the concept of PANDAS have some degree of comfort about future treatment protocols and prognoses.

Edited July 21, 2010 by fuelforall

[Buster]

My goodness... what a thread.

 

What I heard from Dr. K did not match this post. I get that people listened to the words, but they didn't read the slides!

 

He said "by the time most kids see me, they have tried everything else." This means he has a skewed population that isn't particualrly responsive to antibiotics.

 

He defines success as a 75% improvement in all symptoms and resumption of normal age appropriate behavior within 12 weeks of treatment. I know we all want more than that, but that's what he's looking at. He defines "failure" as after 12 weeks if the child does not have "75% improvement in all symptoms or cannot resume age appropriate behavior."

 

Okay, so seriously guys, for all of us who tried antibiotics, did we achieve success in 12 weeks? In our case, I'd say no from first antibiotic. It was on our 4th that we had success 10 days after the treatment. This would mean under the terms that we had three failures of antibiotics and one success. Remember the time limit in his definition of success.

 

I know this sounds like splitting hairs, but what he's saying is his success rate (measured at 12 weeks) is like 80% on IVIG for those he evaluates as PANDAS whereas if I take my personal data, we'd have a 25% success rate at 12 weeks from commencement of antibiotics.

 

Even Beth Maloney who used various doses for multiple years would have counted as "failure" for most of that time because of the time window. I don't know the time from when she started high dose XR, but all the others were failures and I think it took more than 12 weeks on XR for > 75% symptom resolution.

 

Hope this explains this. Remember success has to be defined against a time window for any statistics.

 

Buster

[Johnsmom]

thank you Buster! You made my day!

 

 

My goodness... what a thread.

 

What I heard from Dr. K did not match this post. I get that people listened to the words, but they didn't read the slides!

 

He said "by the time most kids see me, they have tried everything else." This means he has a skewed population that isn't particualrly responsive to antibiotics.

 

He defines success as a 75% improvement in all symptoms and resumption of normal age appropriate behavior within 12 weeks of treatment. I know we all want more than that, but that's what he's looking at. He defines "failure" as after 12 weeks if the child does not have "75% improvement in all symptoms or cannot resume age appropriate behavior."

 

Okay, so seriously guys, for all of us who tried antibiotics, did we achieve success in 12 weeks? In our case, I'd say no from first antibiotic. It was on our 4th that we had success 10 days after the treatment. This would mean under the terms that we had three failures of antibiotics and one success. Remember the time limit in his definition of success.

 

I know this sounds like splitting hairs, but what he's saying is his success rate (measured at 12 weeks) is like 80% on IVIG for those he evaluates as PANDAS whereas if I take my personal data, we'd have a 25% success rate at 12 weeks from commencement of antibiotics.

 

Even Beth Maloney who used various doses for multiple years would have counted as "failure" for most of that time because of the time window. I don't know the time from when she started high dose XR, but all the others were failures and I think it took more than 12 weeks on XR for > 75% symptom resolution.

 

Hope this explains this. Remember success has to be defined against a time window for any statistics.

 

Buster

[3boysmom]

My goodness... what a thread.

 

What I heard from Dr. K did not match this post. I get that people listened to the words, but they didn't read the slides!

 

He said "by the time most kids see me, they have tried everything else." This means he has a skewed population that isn't particualrly responsive to antibiotics.

 

He defines success as a 75% improvement in all symptoms and resumption of normal age appropriate behavior within 12 weeks of treatment. I know we all want more than that, but that's what he's looking at. He defines "failure" as after 12 weeks if the child does not have "75% improvement in all symptoms or cannot resume age appropriate behavior."

 

Okay, so seriously guys, for all of us who tried antibiotics, did we achieve success in 12 weeks? In our case, I'd say no from first antibiotic. It was on our 4th that we had success 10 days after the treatment. This would mean under the terms that we had three failures of antibiotics and one success. Remember the time limit in his definition of success.

 

I know this sounds like splitting hairs, but what he's saying is his success rate (measured at 12 weeks) is like 80% on IVIG for those he evaluates as PANDAS whereas if I take my personal data, we'd have a 25% success rate at 12 weeks from commencement of antibiotics.

 

Even Beth Maloney who used various doses for multiple years would have counted as "failure" for most of that time because of the time window. I don't know the time from when she started high dose XR, but all the others were failures and I think it took more than 12 weeks on XR for > 75% symptom resolution.

 

Hope this explains this. Remember success has to be defined against a time window for any statistics.

 

Buster

 

 

 

 

 

 

 

 

I did not go to the conference, but was only asking about what Dr. K meant on his website: Quote:

 

"It has been our experience however, that eventually ALL patients will become antibiotic non-responders and other therapeutic option must be considered. Thus, long-term full-dose antibiotic treatment for PANDAS does not appear to be a viable option!"

 

He has that last part in bold type.

[Buster]

I did not go to the conference, but was only asking about what Dr. K meant on his website: Quote:

 

"It has been our experience however, that eventually ALL patients will become antibiotic non-responders and other therapeutic option must be considered. Thus, long-term full-dose antibiotic treatment for PANDAS does not appear to be a viable option!"

 

He has that last part in bold type.

Yes, but also read the preceding sentence:

 

"It is entirely possible and even likely that use of antibiotics in the early stages of PANDAS could result in a complete recovery."

 

He's stating what he sees and generally he doesn't see a lot of the "first episode". He generally sees kids referred to him because the exacerbations are continuing and antibiotics are explicitly not controlling the disease.

 

There just isn't enough data to know whether the course is monophasic or remitting (multi-phasic) -- but the evidence seems to suggest that unless it is the initial onset, there is a lack of return to baseline with antibiotics and with prednisone.

 

Best regards,

 

Buster

 

 

Much like Sydenham Chorea, about 80% of cases resolve and are monophasic (only one incident). However 20% of patients have relapses and

[T_Mom]

The best take-away from the OCF conference is summed up in Buster's note on an earlier thread:

 

I'm not sure anyone really quite knows what's going on yet (i.e., are we seeing primarily an anti-inflammatory response? Are we seeing a dilution of Tcell activation through by shifting Th2 to Th1 response? Is IVIG blanketing Fc receptors and reactivating Tregs? Does IVIG, Augmentin or Azith have effect on IL6 production and thereby shifting immune response? Who knows.

 

AND that is from the one person outside of the doctor-circle (so to speak) that I would tip my hat to--

Best quote of the week--Thank you!

[JAG10]

At some point in time I remember hearing that Dr. K's patients have been suffering on average 56 months before they end up seeing him.

[laurenjohnsonsmom]

For anyone that attended Dr. K's lecture, did he mention any long term following of his patients? I asked him that question over a year ago when we first had a phone consult and although I can't remeber exactly, got the impression that he didn't really do any long term follow up. How tough would it be to have a medical student under his instruction contact some of the PANDAS patients he's had through the years and see how they are doing, how much they've recovered, how long it took, what were the bumps in the road?

 

Seems to me it would be absolutely invaluable information in terms of knowing how well IVIG actually works. I still tend to believe that for the most part IVIG does work as Dr. K believes because the few long term stories I've heard, either on here (ChicagoPandas or something like that) or from Diana Pohlman (she has run into or spoken with a few PANDAS patients from 10 years ago or so who had IVIG ) are that they are doing great, fully recovered and leading life to their full potential, but that the recovery was bumpy and took a few years. Maybe someone will post tomorrow that they had IVIG five years ago and are still a mess and I'll change my mind and lose a little hope.

 

Alex,

 

Agreed. As a mother of a child who is functioning well after 2 IVIG treatments (better than 87% in my opinion)and heading toward our 3rd IVIG in less than two weeks I too am interested in knowing when Dr. K states IVIG treatment is successful in >87% of those treated are we to assume he followed up thoroughly with ALL the patients he administered IVIG to get that % and if so how long were they followed?

 

I'm not try to "rain on the parade" because obviously we believe IVIG is effective or we wouldn't be doing it b-u-t just like plasmapherisis, you hear often from parents that it was very effective, immediately after treatment but than some children go back to having issues (maybe because they are re-exposed to a virus or bacteria and the body goes back to attacking the brain and not the virus/bacteria)???

 

Someone I very much admire said to m e recently.."If you see something miraculous happen once-It's a miracle, If you see it twice-It's interesting, If you see it three times-PUBLISH IT!

 

Dr. K has teated more PANDAS patients than probably any doctor in the world presently so he's got a pretty good idea of "the recipe that works". Just like other auto-immune diseases they are chronic so when IVIG is effective the length of effectiveness depends on many variables and I'm assuming that differs from one child to the next. I am looking forward to the YALE/NIH study that is beginning soon to be an actual "documented study" and not an "observation" so it may solidify what D. K an many of us already know, that IVIG has significantly helped our families find healing.

 

Lynn

[kimballot]

The best take-away from the OCF conference is summed up in Buster's note on an earlier thread:

 

I'm not sure anyone really quite knows what's going on yet (i.e., are we seeing primarily an anti-inflammatory response? Are we seeing a dilution of Tcell activation through by shifting Th2 to Th1 response? Is IVIG blanketing Fc receptors and reactivating Tregs? Does IVIG, Augmentin or Azith have effect on IL6 production and thereby shifting immune response? Who knows.

 

AND that is from the one person outside of the doctor-circle (so to speak) that I would tip my hat to--

Best quote of the week--Thank you!

 

What did you expect from Bon Jovi?? Seriously - many thanks to Buster and everyone who took the time not only to go to the conference but also to post for those of us who could not go. Please keep the posts coming and know that the rest of us are hanging on your every word.

[kimballot]

For anyone that attended Dr. K's lecture, did he mention any long term following of his patients? I asked him that question over a year ago when we first had a phone consult and although I can't remeber exactly, got the impression that he didn't really do any long term follow up. How tough would it be to have a medical student under his instruction contact some of the PANDAS patients he's had through the years and see how they are doing, how much they've recovered, how long it took, what were the bumps in the road?

 

Seems to me it would be absolutely invaluable information in terms of knowing how well IVIG actually works. I still tend to believe that for the most part IVIG does work as Dr. K believes because the few long term stories I've heard, either on here (ChicagoPandas or something like that) or from Diana Pohlman (she has run into or spoken with a few PANDAS patients from 10 years ago or so who had IVIG ) are that they are doing great, fully recovered and leading life to their full potential, but that the recovery was bumpy and took a few years. Maybe someone will post tomorrow that they had IVIG five years ago and are still a mess and I'll change my mind and lose a little hope.

 

Alex,

 

Agreed. As a mother of a child who is functioning well after 2 IVIG treatments (better than 87% in my opinion)and heading toward our 3rd IVIG in less than two weeks I too am interested in knowing when Dr. K states IVIG treatment is successful in >87% of those treated are we to assume he followed up thoroughly with ALL the patients he administered IVIG to get that % and if so how long were they followed?

 

I'm not try to "rain on the parade" because obviously we believe IVIG is effective or we wouldn't be doing it b-u-t just like plasmapherisis, you hear often from parents that it was very effective, immediately after treatment but than some children go back to having issues (maybe because they are re-exposed to a virus or bacteria and the body goes back to attacking the brain and not the virus/bacteria)???

 

Someone I very much admire said to m e recently.."If you see something miraculous happen once-It's a miracle, If you see it twice-It's interesting, If you see it three times-PUBLISH IT!

 

Dr. K has teated more PANDAS patients than probably any doctor in the world presently so he's got a pretty good idea of "the recipe that works". Just like other auto-immune diseases they are chronic so when IVIG is effective the length of effectiveness depends on many variables and I'm assuming that differs from one child to the next. I am looking forward to the YALE/NIH study that is beginning soon to be an actual "documented study" and not an "observation" so it may solidify what D. K an many of us already know, that IVIG has significantly helped our families find healing.

 

Lynn

 

Lynn - I agree. I am grateful for the information that Dr. K and all the doctors have from their experience and I am equally grateful for the information that all of our families have from our collective experiences. Sharing that information in writing and at the conference is a gives researchers ideas what hypotheses to study.

 

I so hope that Leckman and others are able to take this information and study it to understand which treatments work best for which children. I often think of PANDAS like a fever. If three children have a fever they could have three different underlying reasons for their fever. One could have strep throat, one could have a virus, and one could have an appendix that just burst! We certainly would not give them all aspirin and tell them to just keep taking it for the rest of their lives because it gets rid of the fever. In my mind, that is akin to taking SSRIs forever to get rid of the symptoms. If we tried to address the underlying cause, the child with the virus would get better in 3 days no matter what, so if we did nothing we would see improvement in 1/3. If we gave antibiotics to all 3 would see improvement in 2/3 (the strep and the virus - even though the virus did not need it) and if we gave them all appendectomies we would see improvement in 2/3 of the children, even though only 1/3 needed it. When it comes to fever, docs are very good at finding the source of the fever and treating it appropriately.

 

When it comes to PANDAS symptoms most docs are not. Is it strep? mycoplasma? lyme? another infection? is the child immune deficient? Is the child producing excessive immune complexes? I can only hope that Leckman's research, Cunningham's research and (hopefully) others' research will help us to move down this road.

[ajcire]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

[Buster]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

you're making perfect sense and we think about that a lot. For us, it was the re-occurence of anorexia symptoms that made the choice easy. I think the points of exacerbation cause the choice points in treatment, not the calms between the storms. I am hoping we have years of calm before any other storms -- Everyone could use the break.

[EAMom]

So what do you do if your child is already being age appropriate but has minor pandas symptoms? It seems impossible to me to justify the use of IVIG for that when he's already at what would be considered a success rate for more serious pandas kids... not sure if I am making sense.

 

Have you done a steroid burst? or even a longer taper? that might be helpful.

 

It might give you a glimpse (if he responds) of what he'd be like if he was even better.

[EAMom]

yes..and also with time (over a year of tracking) we could see dd's "baseline" going up. So, while she was functional, things were NOT going in the right direction!

 

Plus, the fact that she seemed to react to non-strep (eg. viral illnesses) wasn't good...abs didn't help as much with that.

Edited July 21, 2010 by EAMom