norcalmom

PS - Thank you for posting this discussion on white paper - and thank you for using your precious time alone with Dr K to discuss this topic!!

i haven't read every post in this thread so forgive me if this is redundant. While we all owe a huge dept of gratitude for Dr K - without whom I don't think there would be any pandas awareness at all. Over a decade ago, he used a very old, obscure study published by Swedo, to treat a friends child who had pandas, with ivig. He took a huge risk in doing this. It worked, and word spread, and he kept training it and telling people about it. (thank God we live int he time of the internet!) He is not an immunologist, he is a pediatrician with a thriving pediatric practice...I think of him as a bit of a cowboy. And I think with out him, pandas might still be some obscure study. And with ALL due respect ( he changed our families life) his meathods of follow up aren't exactly...shall we say... specific. I would venture to say that there are plenty of kids with Lyme he doesn't know about, plenty following a different anitbiotic regime prescribed by another doctor too. I'm one of them. He may even have patients that got ivig locally months or years later which he doesn't know about. So, his statistics are probably off. BUT he still has the best gut feel - becasue he actually has hundreds of pandas patents, so his numbers may be more based on instict, or partial follow up. He relies on patients to contact him after they leave to tell him what is going on...and I don't know how many patents actually get back to him, or if they get translated from some long email into a database...I dont' know...they could be.. But either way, if some patents don't get back to him, I think he assumes they are all better, while infact they may be pursuing a different treatment with different doctor. The Lyme link is newer?...at least it seems to me...I wan't around 3 years ago, and in looking at older threads and the info I got when I started researching it was strep, strep, strep...and I found one small mention of mycoplasma in a swedo article. So, how would he know to even ask about Lyme..not hat he asked, he had to rely on patients to contact him...patients that may not know there is any relationship between lyme and pandas/pitand. Fo me the link really came when I saw that Cunnningham said that Lyme can also cause elevated Cam K and anti- neuronal antibodies. She hasn't published anything that I know of the subject, but she was the keynote speaker at a recent national Lyme conference...so she's studying some link she has discovered, and as a scientist, I'm sure she is isolating the lyme kids from strep kids. Her numbers I'd buy! And am chomping at bit for something to come out of her lab. While I hope that the white paper raises awareness, validates the diagnosis, gives peds everwhere tools for screeening (questions and baisc tests) I really hope that it recommends referring cases that do not remit 100%, or that recur, to a specialist. The same way we all recommend new members of this board to get to a specialist if they can. And ways for doctors to become "specialist" - how do they get some training and information. In an ideal world there would be a specialist in every state, that knows the all the screening, tests, and treatment options. I think the DAN folks have done this well. Maybe we should be using that as an operational model for information and treatment. I think that this will have to happen first to get to where we want to be - which would be all doctors able to identify and treat pandas.

Can't speculate on seeing more cases where one isn't enough..I'm hoping its because all the docs that are doing slightly different things are sharing information about what is working best for them! Personally I think some kids need more than one, but for some one is enough. But how do you know? Do you wait for a relapse - or just prescribe 3 right off the bat? Is there a benefit to 4 week spacing, or is 12 better? What about ivig in exacerbation vs out of exacerbation? Does recovery look different for those two groups? There are so many ways to think about doing another one and how to know when is the right time for it. We decided to wait...I wanted to retest (cunninghams and immune panel) and to get tested for Lyme and Myco P ,which we didn't do before first ivig. I'm glad we waited. I still see some things improving. But DS wasn't in an exacerbation prior to his ivig, he was in a relatively good place. I am hoping cunningham and other tests come back normal and we can switch his antibiotic, which might be enough to knock that last bit of OCD out. But if his cunningham test comes back still in pandas range, we might consider another ivig . I know its just a study, but the correlations between these antibodies and symptoms is enough proof for me to want to get those antibodies under control.

Does anyone know what Dr S is using in her current study?

I cried too - Vickie did you put that together? That was awesome!

I agree with dcmom. I believe that once Cam Kinase and Anti-neuronal antibodies are produced at many times normal rates, it is proof that this is an auto-immune disease. When they say “These findings illustrate that antibodies alone are sufficient to trigger this behavioral syndrome,” Dr. Horning - to me this means NO infection took place. The fact that the antibodies (without any infection) can cause the symptoms, is proof that it is an auto-immune disorder. I also think I recall that all the mice they used were bread to have genetic susceptibilty to react? Not juts any mice were immunized...I'd have to check the study on that, I haven't read it in a long time. Weather Lyme can cause neuro-phychological without the raise in the Cam K and aintineuronals, I don't know. Seems possible. Are there alot of Lyme patients with with Neuro-phyc symptoms, and normal Cam k (and anti -neuros?). My interpretation of Dr C's studies and the mouse study, and information passed from Dr C's office, is that CERTAIN infections - including strep, Lyme, and mycoplasma pnemoniae, can ALL trigger this auto immune reaction. There may be (and probably are) other infections that can trigger it. I have an autoimmune disorder, and was told "in 50% of the cases we know it is triggered by Lupus, Hepatitis C, or exposure to mercury (amalgam fillings!)" in the other 50% we don't know what sets it off. But the fact is, it doens't much matter what the trigger is..It has been pulled. It could have told me I have lupus or Hep C - which they tested me for, but I didn't. Whatever set it off is gone (probably amalgam issues I had 6 months prior), as far as I know but the condition persists...even years after it went away.. in times of extreme stress (like when pandas entered our life!) - it rears its ugly head. While its important to make sure the trigger is eliminated, it seems that the trigger has pushed something in my immune system that can never fully be undone. I wonder if the underlying reason certain individuals are susceptible is genetic, or perhaps they have another chronic infection that had gone undiagnosed. I think right now we think.. genetic disposition + exposure + (BBB breach?) = disorder. What if it is not genetic but is another type of infection/or immunce disorder, like say Lyme (or Lupus, or MS)..or a different combination of things that need to be there. The other thing I often wonder is if other parts of the immune system (IgG, IgA, pnemoniae antibodies, subclasses) get more and more messed up the longer the kids have pandas , or if some of them had messed up immune systems in the first place, making them more susceptible. What came first, the chicken or the egg? since from what I know there is a feedback loop - and the immune system has a memory, it learns from itself..Are PITAND kids more messed up than pandas? Are pandas kids going to turn into PITANDs if they don't get intervention? Does ivig work for pitands as well as it does for pandas...While we are getting more and more answers, I feel it is so slow I will die never knowing. Oh an ANOTHER thing...there are so many people talking about the gluten / celiac connection - I wonder if celiacs disease + strep = pandas (or high Cam K). Or celiacs + lyme...or...you get the picture. Sorry, my ruminations are not very productive!

We went gluten free for a month when we were trying to figure out what was going on (right around the time we got pandas dx) I MAY have seen a VERY slight improvement over the month, but I think it was really just his pandas exacerbation waning (didn't really know this pattern yet). A couple months later We had gastroenterologist run celiacs blood testing, Endomysial AB igA. It was negative. Our new doctor wants to run a stool test, from EnteroLab, we have not done that yet. He said its not a standard test - its sort of "alternative"..he is doctor of integrative medicine. It would show if DS has a sensitivity, which he can have without having celiacs disease.

YAAAYYY!! Thank you for posting P.Mom! They are sooo under staffed. I know they are doing "pandas research" but does anyone know what they are going to do with all the data they are collecting from our kids blood and questionaires? what specifically are they working on? Her original study only had a small number of kids in each group (25 non-pandas tic or ocd, 5 "normal",6 SC, 16 pandas)..but she must have hundreds of blood samples now. I just wonder if they are working on making this a standard blood test for auto-immune neuron-pshchological disorder (or what ever they decide to call it)..or are they trying to find all the antineuronals effected, or are they looking for the specific "rouge" anti-body that these kids create? orr....? I'm jsut dying to see something new published (I don't really care what -everything they put out can only help convince the med establishment this disorder exists!) YES ! - christmas cards, thank you cards, pictures, lets all let them know how their work effects us personally!

HI all, I sent in a follow up Cam K test to Kathy A. for my DS last Thursday. We had a couple quick emails about receipt of the package and when the test results for the Cam K might come back (after Christmas...so we're talking 6-8 weeks ... just a few months ago when we did these for the first time it was around 2-3 weeks!)..Anyhow, I assumed some of this was because they would be taking some well deserved vacation days - NOT! They are catching up on over a hundred kits that need to be evaluated, and with exception of Thanksgiving day and a few days around Xmas will be working...and she said that its all "for the cause", (I'm assuming that means it isn't for the great pay and benefits!). And that she just couldn't enjoy a long break knowing that some family was out there that needed the information. Anyhow, I sent her a short "Thank you for all you do" email - telling her just what having those test results meant for my son, my family, and his future. As well as my nephew, misdiagnosed with ADHD and Tourettes for years (whose Cam K came back at 183) . This little note obviously meant a lot. she said she cried. (Really, it was very short note)..but I think the unsung heros in that lab could use some feedback. So if you have a moment to let them know how important their work was to you personally (let alone the cause of making pandas a legitimate, well accepted, dx with tests and studies that back that up!)...I think it would mean a lot to them. I don't want to flood her inbox, so maybe if anyone that is sending her thanks could title it -" JUST A THANK YOU"...so she knows no urgent work related stuff is in there. And - Thank you to all of you!! - who having given me and my son so much support and information in this battle for heath! Your posts and knowing there is a place to vent where others will understand have kept me sane.

Congratulations!!! I am sooo happy for you and that Lance, and that has made a new "pandas" friend - they can support each other! You are an amazing person for making it happen.

Thanks Phamid - that was very informative! DS just got tested for myco p.. We don't know results yet, but won't be changing our antibiotics (currently azith) to anything until we rule out myco p and lyme... Do you know how this might be related to the Strep pnemoniae titers - serotype 14 (or sero-type 8)...which my DS failed all but one of? Is mycoplasma - "walking" pnemonia, and strep pnemoniae "real" pnemonia? Are they different bacterias entirely?

Is it becasue of the bacteria in your mouth? I have heart issues, and have had to take antibiotics prior to dental work, even cleaning, but its only a couple days. My husband (no heath issues) reecntly had some major surgery in his mouth and had to take some pretty heavy duty antibiotics for days before and after oral surgery. Are all the kids reacting to dental work here pitand (not just pandas?) , perhaps they are reacting to the direct influx of bacteria into theri blood?

Were you treating during those 3 months?

We only had one scary event like this. And it was in the worse of my DS's exacerbations. But might want to talk to doctor about that and try to get a scan done, because pandas isn't the only thing that can cause symptoms like this. Here is a great page from the pandasnetwork page that summarizes some studies on pandas and encephalitic like episodes: http://pandasnetwork.org/strep-controversy/encephalopothy/

Jag10- did you get immune panel done for Igg,IgM, IgA and subclasses? that ratio could be off due to a low or high igg level. Our Vit d was slightly low (but sooo many peoples are) mine was too. My son's was around 25 as I recall, so not too bad. But 15 seems like it might be in defecient category. I'd google it. the recommend level for our lab said above 30. I think codliver oil is high in Vit D...so maybe switching some of your fishoil to cod-liver oil will help? Or just add a Vit D supplement. We like the drops - they are tasteless. It takes a few moths to build up the levels. my kids and I are from northern Europe - swedes and irish and german, so our ancestors ate a diet high in these fish and oils, to keep Vit D heathy in almost no sun environment. Now those foods are missing from our daily diets, and we slather sunscreeen all over our fair skinned kids blocking the other way they can get vit D...so no wonder they are lacking. (and I am too).

Hi all, I'm about to test DS with igenx complete lyme panel and co-infections panel..l.And I'm doing it even though my pediatrician told me specifically not to use Igenex, due to an investigation going on with that laboratory. Reportedly, their test always come back positive, but this was a few years ago, and perhaps was because their tests are more sensitive.. From what I was able to dig up, the lab was cleared, so I am going to go ahead and use them because so many here, and our new doctor, like them. but I'm still slightly skeptical... So, I was wondering, do any of that have been treating Lyme for a while go back and re-test using Igenex? Or know of anyone (or asked your LLD about retesting?)..do they do this - to see if the infection has cleared? Also, how long does herxing last? I keep reading about it from people that started Lyme testing months ago. and it seems very weird that people would continue with a treatment that seems to be making them worse due to herxing - for that long. I can see for a few days, couple weeks, but is it to be expected for months? WE don't even know if DS has lyme. I'm dragging my feet on going there. He is much improved from ivig, but not as much as we had hoped for (completely!) thanks for sharing your experiences - Norcalmom

Kim, no - he didn't specialize - yes there are "merucry free" dentists out there - and now I recommend finding one if you are having amalgam removed! There are many things that cause alopecia - it isn't a condition itself, its a symptom of something else, often time of unknown origin. Also, a number of people here have mentioned kids with trig that said they had a feeling in their scalp..many conditions that alopecia produce that same feeling - its like having a rash you cannot see, you can feel something, maybe even itchy, or just "there" like a pimple before it emerges...a felling that something is there and then you touch it and you can feel something going on with your skin. so who knows - maybe in some cases of trig there is something going on with the scalp - and it feels good to pull the hair out because of it. the autoimmune disease I have ... the hair does not grow back. I have a very mild case, so I'm lucky, but when I first googled this and saw the bald pictures i freaked!! I did get one small spot on my head (hard to find it - but it is still bald!) and I had an itchy rash on my inner elbow and torso, I responded well topical cortisone. Some don't, and man was it scary thinking that A)my increditble strong and heathy body had truned on me and I could go bald...for almost no reason and nothing I could do to stop it. Autoimmune disease stinks.

Thanks for the post - at first I was thinking it was "the white paper" (and I was disappointed)...but it was published Aug 2010 (according to what I found). so it can't be. And it looks like the summary is basically saying "we need a white paper on dx and treatment" ...interesting that Kurlan's name is on it... love the "pros, cons and inconclusive" chart of research supporting an infections/immune association with tics and ocd!!

Hi all, Amyjoy and her son (along with very supportive friends and members of their community!) are having an auction this weekend. This is an event for her son, in an effort to raise money for his treatment, and for pandas awareness. But this post isn't to solicit donations. Amy's incredibly brave 14 year old son, Lance, has asked Amy to try to find another pandas kid to go to the event, even if they don't want to be known as a pandas kids - it would be totally anonymous, just amy and Lance would know. This request came during a conversation about the event where he asked that the event be more about pandas and kids with pandas, not about him. Such a boy! She sent me a P.M..and unfortunately we cannot make it. I was so bummed out. I just thought it would be sooo great for my son to give back a little, since I've pretty much sheltered him from how difficult it is to get treatment, and how lucky he is to be able to afford treatment. It would be a much more personal activity than the usual gift and service stuff we try to do this time of year. So, if anyone is in San Francisco area (the event is in Sebastapol) and would like to stop by and meet Amy and Lance, I hear he might be playing the drums with some friends at the event!! This is a family event with all kinds of entertainment and activities for all ages. http://helplance.info/event.html (hope I'm not breaking any board rules here...really, just that I know Amy would love for her son to have some support for the pandas community so he doesn't feel so alone) Amy - I'm going to have my son write a message to Lance on your PM - so look for a PM from me to print for Lance! Good luck this weekend!

IVIG has been a huge help for my son...and even just the past week we saw more gains. At 13 weeks post ivig. His compulsion to look into the sun - gone. Tics - gone. Sleep issues - gone. Bed wetting - gone. remaining behaviors that are problematic - still has issues with me (yes..only me swallowing in front of him. But, just yesterday after having a great past week mood-wise, I asked him if he wanted to work toward getting (some video game he wants) if he could eat in the room with me (30 times), starting out REALLY small. He was in! - he stayed in the room for 5 bites last night without going nuts - tonight we'll try 10 - than at the end of the time he will have a meal with me -thats the goal he's working toward anyway. Now, I've also given him an out...if he can't stand it he has an alternate thing he can do to earn..he can go for a mile run. That way he isn't punished for not being able to complete the program. He doens't mind running that much (we are a family of runners) but eating with me is much less effort. So, its like our own little exposure therapy, he is totally in. Up until this point I don't think he would have ever considered it. he just literally had NO control over the intrusive thoughts (the image of me swallowing would "stay in his head for like 20 minutes" and he would get very angry at me. He would rather cut his arm off than watch me eat..but now, it still bothers him - but it isn't for as long, and he doesn't get as angry. so, maybe he's ready to "unlearn" that response to this trigger. anywhow - just wanted to share our story with you. It works for compulsions. Sounds like you son just switched from one complusion to an another - like the way my son's tics used to move around. (and I used to hope his compulsion to look into the sun would become handwashing - like all the other "normal" ocd kids!) Have you done a cunningham's test?

Phasmid, I'm so sorry you are having to deal with this. You did the right thing taking his phone away. Kids are starting to be prosecuted for creation of child pornography (even if its pictures of themselves, forwarded to a friend). for creation of child porn, and distribution of child porn - a count for every time they forwarded that picture on. So to protect him, and anyone involved, I'd restrict any form of electronic communication I could. Not as punishment - as protection for him and anyone on the receiving end of it. This does not sound like a separate thing. If he started to compulsively wipe down his bathroom in beach twice a day, you would think pandas. its jsut a different trigger and different behavior. My child looked into the sun. I spent way to long trying to find other people that had the same behavior, and worrying about what if the next compulsion is to cut himself, or open the door while the car is going onto the highway... What matters is he cannot help himself from invasive thoughts and compulsions. In particular he can hurt himself and others with this particular one..so much more stressful. Dr K told me a story while in Chicago - one of his first appointments one day was a kid that could not stop praying, and asking for forgivness...and in the afternoon, he had different that couldn't stop swearing and saying the foulest of things. To him its all the same. You are not alone. Parenting a teen is difficult enough, but one with impulsivity issues and compulsions...I know I've read your posts about the trig, but did you ever get ivig or do any steroids? Thinking of you-

hello peggy sue and sacklesb - welcome - we are in the area as well. we decided after a year of trying to find local help and experts (cobbling them together ourselves) to go to Chicago to see Dr K for ivig. There is a new doctor in Petaluma that follows Dr K's protocol - and consults with Dr K on certain cases, that we are now working with, and is working with my nephew as well. his name is Dr. Sunjya K. Schweig MD wesite : http://hillparkmedicalcenter.com/practitioners/ he does ivig at his center, so should we need another we won't have to fly to chicago. We did a phone consult with him and are doing some tests for lyme and a few others. Also, Dr Thienneman in Palo Alto, but she can only do so much, she is pychiatrist, and pandas usually requires immune work ups, bacterial investigations and testing, and lyme screening (and possibly testing) .

Hi mom md Thanks for the update! I'm happy you have found what works for your son. Did you happen to also do cunningham tests after the ivigs in addition to the titer testing? my DS doesn't have high titers, so I'm trying ot figure out if any docs out there are using the cunninham test (along with symtoms) to determine when another ivig could help.

HHHMMM indeed. I have had mild lichen planus - an autoimmune skin disease that can give you alopecia. In 50% of the cases the cause is unknown. in 50% they attributre the tirgger to mercury fillings, lupus, Hep C, or medications. I had all my old filling removed just before mine started...but wonder if some underlying infection made me more succesptiple to this condition...mine went away after about 3 years, but recently I've had a little flare up - stress over DS's pandas/ivig. Mine was diagnosed with a biopsy after I was very persistent w/dermatologist - took me 3 visits to take me seriously, and give me a biopsy, and I think she only did this because mine presented similarly to dermatitis herpetaformis - the skin disease that some people with celiac disease get. I am sure plenty of people get it and jsut have "alopecia". I have come up VERY slightly positive on one rapid strep test, and have had two cultures done since that that were negative..hhhhmmmmmmm. I've also never "had" strep in my life - although I remember my sister having it constantly.I Took the round of antibiotics they gave me after the rapid was positive (even tho doc called to and told me not to bcs culture was neg.) and have done some oil of oregeno since then as well.

We are doing doing igenix tests next week. Can anyone comfirm which ones you can't do on antibiotics (cus I'm not willing to take DS off 500mg of azith daily to run the test) I thought it was just the basic lyme panel, but doc (not lyme doc) says you can do all co infections too...I should email igenix again, and will, but saw this thread - and I htin k this board is where I first saw that kids have to be off antibiotics for 2 weeks prior blood draw for some of the lyme tests - don't know which ones (maybe the PCR?) whatever that is??