Dr. K's presentation at OCF Conference

[NMom]

I just might be the only person not totally irritated by her. Everything is biased. People's opinions on doctors here are biased to who helped them as well. I think that just as irritating as it is for us to see her say you need high titers and that antibiotics are the way to go, I kinda feel equally irritated hearing that IVIG is the only way to go. Each child's needs are individual. Clearly pandas is not one size fits all...

I agree with you ajcire. Her approach may be a bit heavy-handed but I'm always going to be grateful that she was motivated enough to write the book and raise awareness. Otherwise my child would probably be on an SSRI and not getting any better. I also have a lot of respect for anyone fighting this battle - particularly a single-mother of three. I have a husband and only one child and we barely make it through some days. I was at the conference and attended all the PANDAS presentations as well as the dinner. It was very frustrating to realize that even the doctors most familiar with PANDAS do not agree on how to treat. And I certainly don't want to hear that IVIG is the only approach when there are cases where long-term antibiotics worked. But I respect Dr. K and his experience a lot. I hope and pray that everyone dealing with this disease finds the right treatment for their child and that the doctors are able to create some definite guidelines to make diagnosis and treatment easier. Just my two cents...

[EAMom]

who the H*** is "whizzing along"?!

 

I do care about Singer -- we were referred to him a year ago! They need to be on the bandwagon, not dragging it down like they now are. only due in a large part to this forum was i able to discern what to do. what if i had gone to him as one of the leading experts in the field and had actually BELIEVED him and followed his advice and been referred back to our psychologist only??? for at least 6 months after and still to a lesser degree, i've felt the extensive reach of the long arm of the esteemed JHU in influencing drs. in my area.

 

I was personally struck by the compassion and caring of the dr's that spoke. yes, each has their idea of what's right and it's frustrating that they don't agree. but i felt they think - holy sh**, what's happening here and we've got to get a handle on it.

 

i went to hear dr k and his experience. and that's what i got -- his experience. i like that he speaks with confident authority. i don't have to take his word as the final truth but i wanted to hear what he has found with how he treats.

 

i was especially struck by Leckman. he seemed to me almost ego-less and taking our stories personally and doing what's in his power to try to figure out what the h*** to do. beginning with having the experts reach some sort of consensus.

 

thanks, Smarty - I was not able to go to the conference, but it is good to hear your perspective. I know that Dr. K has lots of experience and it is good that he is presenting and sharing it. You are right - it is just that - his opinion... but that is where we start. It is the lowest level of evidence, but it is a starting point from which research studies can be generated. In all likelihood, there will be some parts of his information that will be disproven and some that will stand the test of time. ... and Yes.. it is frustrating that the doctors don't agree... but if they communicate and collaborate then the best procedures can be developed.... and those procedures can be tested... and in a few years we will have recognizable names for all the PANDAS subtypes and we will have standard protocols to treat each type. We need all the doctors to talk about what they have found successful and we need Leckman - and more of him - to test this stuff out and make it evidence-based, so we can get insurance coverage.

 

In the meantime, though, we still have to live with JHU influencing doctors in your area.... and CHOP influencing doctors in philly, and all the other children's hospitals spitting out the NIMH website info to every child who walks through the door. It is difficult (for me) to forget the condescending tone in my local neurologists voice 6 months ago when he said "Mrs. **... we've been through this before... your child has a tic disorder. He does not have PANDAS. The "s" in PANDAS stands for strep and your child did not have a strep throat. Even if he did, we do not treat it any differently than any other tic disorder. You can go back to the psychologist for more CBT, go back to the school to ask for more accommodations, and I would be happy to start him on an SSRI if you would like.. now I cannot and will not do the blood work that was recommended to you from that PANDAS website". UGH! The kid had an infected cyst in his sinus and it was pressing on his eyeball and we had to drive 7 hours to Dr. B to figure it out for goodness sake!... but that local neurologist can be very proud that he stuck to the guidelines!

 

Ok... sorry for the emotional digression.... My point is that we all need to stick together and support all of our docs as they grapple with this and try to figure out the best solutions for our kids. I am sure that the best solution for my kid is not the same as the best solution for other kids...Our kids have different underlying problems... some have strep, some have staph, some have viruses, some have mycoplasma, some have lyme... so the treatment will vary.. for some it is antibiotics... for some antivirals... for some IVIG... but we really need to encourage communication among the docs to find the best solution for all kids.

 

I hope that this conference was the start of commuication and not the end. Does anyone know if there are plans for more conferences where the docs can come together? That is what we need to develop evidence to counteract singer and kurlan.

 

Great posts!

KimBallot, I think YOU should present your son's case at the next conference...including the your experiences with your local neurologists.

Edited July 20, 2010 by EAMom

[tapiash]

Now I am wondering if I should take my son of of antibiotic. I did not see any improvement on it until we started the steroid. We have had 1 ivig and my son is okay, seeing a little regression but it is manageable. He is still taking the antibiotic. I wish our doctor was closer. It is so tough to schedule phone calls with him.

 

I hate not knowing what to do. I wish PANDAS was not so complicated

[kimballot]

Okay. I think maybe I should let this thread rest,but now I need a copy of that blast:)

 

I am confused about the whole antibiotics alone cannot help some children long term (and I mean more than one sole child). IVIG cannot help a child alone long term if they contract strep. I'm confused. Even though I don't need Dr K right now, perhaps he needs to allow parents to provide him histories of kids that do approve on antibiotics alone so he can keep track of them too without those parents actually travelling to see him. As it was said on here before, is his sampling now become non representative of the whole PANDAS population because mainly those who need the "bigger guns" go to see him and not those who have improvement with antibiotics alone.

Vicki - unfortunatly, each doctor views PANDAS through the lense of his/her own experiences... and they do not have experience with each other's patients (I am agreeing with LLM, JAG and others here). We need a cross sectional study that looks at patients from different doctors and looks for correlations of problems with treatments and outcomes. It is not a real high level study, but it is the next step after the observations of single doctors.

 

Is Diana collecting data? Analyzing it would be a great research project for a University graduate student, if they submit for institutional board approval.

Edited July 20, 2010 by kimballot

[JAG10]

Okay. I think maybe I should let this thread rest,but now I need a copy of that blast:)

 

I am confused about the whole antibiotics alone cannot help some children long term (and I mean more than one sole child). IVIG cannot help a child alone long term if they contract strep. I'm confused. Even though I don't need Dr K right now, perhaps he needs to allow parents to provide him histories of kids that do approve on antibiotics alone so he can keep track of them too without those parents actually travelling to see him. As it was said on here before, is his sampling now become non representative of the whole PANDAS population because mainly those who need the "bigger guns" go to see him and not those who have improvement with antibiotics alone.

Vicki - unfortunatly, each doctor views PANDAS through the lense of his/her own experiences... and they do not have experience with each other's patients (I am agreeing with LLM, JAG and others here). We need a cross sectional study that looks at patients from different doctors and looks for correlations of problems with treatments and outcomes. It is not a real high level study, but it is the next step after the observations of single doctors.

 

Is Diana collecting data? Analyzing it would be a great research project for a University graduate student, if they submit for institutional board approval.

 

That is exactly what I mean! Graduate students, lots of them designing surveys under the supervision of University Drs. as their thesis requirement. But who is actually teaching/supervising with the interest? I would think Dr. Leckman's students are too advanced.

 

Diana is collecting some data of those who have contacted her, but again, I think people are sharing their stories and some specific info is being pulled from that. I'm not sure, perhaps she will chime in. Certainly that is an overwhelming task on one mom.

[thereishope]

Yes, I know/agree. It's one of those situations when I can look from the outside and say "It would be nice if ..." but I am sure all of these specialists are overwhelmed with their case loads.

 

Okay. I think maybe I should let this thread rest,but now I need a copy of that blast:)

 

I am confused about the whole antibiotics alone cannot help some children long term (and I mean more than one sole child). IVIG cannot help a child alone long term if they contract strep. I'm confused. Even though I don't need Dr K right now, perhaps he needs to allow parents to provide him histories of kids that do approve on antibiotics alone so he can keep track of them too without those parents actually travelling to see him. As it was said on here before, is his sampling now become non representative of the whole PANDAS population because mainly those who need the "bigger guns" go to see him and not those who have improvement with antibiotics alone.

Vicki - unfortunatly, each doctor views PANDAS through the lense of his/her own experiences... and they do not have experience with each other's patients (I am agreeing with LLM, JAG and others here). We need a cross sectional study that looks at patients from different doctors and looks for correlations of problems with treatments and outcomes. It is not a real high level study, but it is the next step after the observations of single doctors.

 

Is Diana collecting data? Analyzing it would be a great research project for a University graduate student, if they submit for institutional board approval.

[laurenjohnsonsmom]

I used to be on "that" mailng list (which I've heard is commonly refered to as a "fan base") b-u-t for some reason I must have fallen off of it!

 

Guess I'm not c L Enough! (I just love those smiley faces)!

 

Peg, you really need to get on her mailing list! ha ha ha

 

Actually, I ignore most of her "e-mail blasts" but for some reason, happened to read that one.

[laurenjohnsonsmom]

Okay. I think maybe I should let this thread rest,but now I need a copy of that blast:)

 

I am confused about the whole antibiotics alone cannot help some children long term (and I mean more than one sole child). IVIG cannot help a child alone long term if they contract strep. I'm confused. Even though I don't need Dr K right now, perhaps he needs to allow parents to provide him histories of kids that do approve on antibiotics alone so he can keep track of them too without those parents actually traveling to see him. As it was said on here before, is his sampling now become non representative of the whole PANDAS population because mainly those who need the "bigger guns" go to see him and not those who have improvement with antibiotics alone.

Vicki - unfortunately, each doctor views PANDAS through the lense of his/her own experiences... and they do not have experience with each other's patients (I am agreeing with LLM, JAG and others here). We need a cross sectional study that looks at patients from different doctors and looks for correlations of problems with treatments and outcomes. It is not a real high level study, but it is the next step after the observations of single doctors.

 

Is Diana collecting data? Analyzing it would be a great research project for a University graduate student, if they submit for institutional board approval.

 

That is exactly what I mean! Graduate students, lots of them designing surveys under the supervision of University Drs. as their thesis requirement. But who is actually teaching/supervising with the interest? I would think Dr. Leckman's students are too advanced.

 

Diana is collecting some data of those who have contacted her, but again, I think people are sharing their stories and some specific info is being pulled from that. I'm not sure, perhaps she will chime in. Certainly that is an overwhelming task on one mom.

I know patience is the hardest word to hear when your children (and your family) is suffering but if you look at where PANDAS was just 6 months ago we have accomplished lots ("we" meaning the parents/doctors and researchers). I can personally attest to how much time and effort it takes to add or update one small area of our website (not to mention the cost). There are tons of initiatives that a whole handful of driven parents (most who are forum members) are working on while treating their PANDAS children and most working full time jobs. It all takes time (and patience). These PANDAS docs are also working around the clock, doing the best job they can with what little they know about this disease. There's never enough time at the end of the day to compile research/data but they understand the importance and what happened over the last few days was just the beginning. I remember LLM posting a thread a while back summarizing the recent accomplishments in the PANDAS world and the list as long and impressive. Thanks LLM!

 

Call me the optimist but only good can come from these recent meetings/conference. I think we should celebrate and look forward to the road ahead. I am confident, we will keep moving forward, one step at a time, and we will conquer this disease!

 

Have you (((hugged))) your PANDAS doc today???

[3boysmom]

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!

[Doug]

All I know is that we will forever be greatful for Dr.k and Diana Pohlman

the last 6 months have been the best in 2 years for our dd

Dr.K thinks that you need both IVIG and abx's together

does it work for all kids? probably not that would be to easy..

but it was a great start for us.

our dd NEVER NEVER NEVER tested + for strep BUT Dr.k said it he thinks it started in her ears

she had at least 15 or more ear infections in 2&1/2 years.

Why&How??? we will never know the reason.

Our dd could change in the morning and wake back up into the H**L

that she had been I pray not, I pray for all of us.

 

Tracie

[Worried_Dad]

We're also incredibly grateful to Dr. K, who's been our son's "go-to doc" for PANDAS for the past 2 years. Also incredibly grateful to Beth M, who took time to e-mail and phone me during our darkest days, even before her book had been released, to let me know what worked for Sammy. Without either of these resources, our son's prognosis would have been grim.

 

I'm no doc - just a "medical science challenged" parent. But if I had to recommend something based on observing one PANDAS patient, our son, I'd say: the combination of IVIG and abx is key for severe cases. Our 1st IVIG triggered dramatic improvement... but we had been on a month of high-dose abx (2 weeks of zithro, 2+ weeks of augmentin) just prior to that procedure. On a "standard prophylactic" dose of augmentin (500 mg daily), things went downhill again several months after IVIG. IVIG rounds 2 and 3 didn't trigger much progress after 3-4 months... until we added the "Saving Sammy" dose of XR.

 

So I'd wager that the major PANDAS clinicians and spokespeople all have a piece of the truth. Hopefully they can put those pieces together and the community can finally solve the bloody puzzle!!!

 

 

All I know is that we will forever be greatful for Dr.k and Diana Pohlman

the last 6 months have been the best in 2 years for our dd

Dr.K thinks that you need both IVIG and abx's together

does it work for all kids? probably not that would be to easy..

but it was a great start for us.

our dd NEVER NEVER NEVER tested + for strep BUT Dr.k said it he thinks it started in her ears

she had at least 15 or more ear infections in 2&1/2 years.

Why&How??? we will never know the reason.

Our dd could change in the morning and wake back up into the H**L

that she had been I pray not, I pray for all of us.

 

Tracie

[Alex]

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.

[becjonz]

I got the email blast from Beth as well and I too bristled at the mention of a specific doctor and yet also bristled at the doctor's opinion. Like others have said our PANDAS kids present in so many different ways and to such varying degrees why is it then so hard for both sides to acknowledge that there should be a continuum of treatment options. My ds is not nearly as severe as some stories I see on here so I don't forsee IVIG in our future BUT if things change then I hope I can find a doctor who will look at ALL options.

 

As far as the financial impact of PANDAS...I often wonder how we can start a fundraising campaign that would be nationwide yet carried out locally. I know we are small but I keep thinking of the American Cancer Society Relays or the American Heart Assoc. Heart walks, etc. I have so many friends and family that I'm sure would participate/contribute and it could serve a dual purpose of bringing awareness. Money raised could be funneled into two areas- research and a fund for families who need financial support to get the help they need. I don't have experience in this area other than raising money and participating but I'd be willing to learn and try. Maybe we could organize some group on here to combine efforts and ideas then carry out locally. Am I crazy? I just keep having cross my mind so wanted to put it out there.

[thereishope]

I was thinking of how a company made an offer to sophia's cure. For every person who became a fan on this company's fan page, they donated $1 to Sophia's Cure. The thing is Sophia's Cure was approached. We'd have to approach and convince a company to do something like this.

 

Then, like you said, there's local to national things similar to Relay for Life and the Great American Bake Sale but what can be our thing? My creative juices just aren't flowing right now:)

 

 

 

As far as the financial impact of PANDAS...I often wonder how we can start a fundraising campaign that would be nationwide yet carried out locally. I know we are small but I keep thinking of the American Cancer Society Relays or the American Heart Assoc. Heart walks, etc. I have so many friends and family that I'm sure would participate/contribute and it could serve a dual purpose of bringing awareness. Money raised could be funneled into two areas- research and a fund for families who need financial support to get the help they need. I don't have experience in this area other than raising money and participating but I'd be willing to learn and try. Maybe we could organize some group on here to combine efforts and ideas then carry out locally. Am I crazy? I just keep having cross my mind so wanted to put it out there.

Edited July 21, 2010 by Vickie

[MomWithOCDSon]

So, we were at the conference also, and I think the full picture has been accurately reported. I, too, received the email blast and while I'm not thrilled with the tone of it, I think we all have to take a breath and understand that everyone has their own story, their own perspective and their own path, to some extent. And there is information to be had in ALL the stories and perspectives. In short, LLM, I couldn't have said it better than you!

 

I will say, though, that because we were in attendance for the entire conference and even a few days afterward, we had the opportunity to attend a number of the "standard OCD" sessions and meet a number of other families who, at least up until now, have had strictly OCD diagnoses. A very familiar story to us.

 

Some of those families attended the various PANDAS sessions, and they came away from the batch of them very confused. While OCD treatments also have their "gurus" with varying techniques and "holy grails," few of them vary as broadly as what was put on the table in the PANDAS sessions, and that resulted in some big red flags for some of these "newbie families." I spent some time talking with some of them, encouraged them to log into the forum and do some reading, etc., but you can understand how the "dissonance" among our top docs is cause for concern in this regard.

 

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.