norcalmom

Just a thought that someone shared with me about parenting a pandas kid. It makes you a better person. It makes you a better parent, it makes you more humble, more forgiving, more understanding. It makes you a better friend. It just makes you better on so many levels. Although I wouldn't wish it upon anyone, I know I'm better for it, so it one small way it is a gift. You are better than her. She has a long way to go on her parenting journey. And don't worry - as some point in her life her child will give her a challenge that will force her to grow (and probably regret a lot of her past behaviors and comment). They all do in some way. We just get our lesson earlier than others.

Here is a link to an old post called "Chicago Trip advisor" - with stuff to do, places to stay...logistics of where the office is vs where the infusion center is... http://www.latitudes.org/forums/index.php?showtopic=9157&st=0&p=76456&fromsearch=1entry76456

here is an old thread on ivig vs pex. I started it about 6 mos ago when trying to figure out what was better. I was going to pursue PEX...but as you read toward the end of the thread, there seems to be belief that ivig may have more of a regulating effect on the immune system...and also seems that vast majority of doc do ivig, but not PEX...so although PEX might be more immediate - it wouldn't be for us because it would probably take far longer to get an appointment with the one doctor I knew that did it for pandas. Also, I think that we should stop saying that PEX is better for tics. I think when people read that they think if they have a ticcer ivig won't work for them, AND more importantly, that IVIG is better for OCD - which I have not seen anything that says this (and someone saying that DR K said this from above post). in the study comparing pex to ivig - in the summary they specifically call out how much more effective the PEX was for OCD. In the study, and antecdotally on the board, it seems that PEX is better FOR BOTH. This makes more sense than picking one symptom to me. What about..bedwetting, what about nightmares...what about sep. anxiety...why not separate into groups along those lines? To me that doesn't make sense. However, the study stops after one year, so we can't see what kind of relapse rate is involved, or what further healing happens after a year. Here is the link to the thread called ivig vs pex, it is an excellent summary, and a number of people that contributed have done both: http://www.latitudes.org/forums/index.php?showtopic=8699&st=0&p=72100&fromsearch=1entry72100

I don't claim to be an expert, I'm just quoting the studies. Maybe you think you are the expert. I'm not a pandas expert. I'm a mathematician. Statistically, there isn't enough data to compare the two groups. If I took two small groups of kids, and matched them exactly the same as she did (which is not exactly) and gave them both ivig. I would see differences in the numbers. There would be one or two ticcers in one group, there would be drop outs, there would be relapses, there would be the fact that one group was older (and perhaps one kids entered puberty and spontaneously got better), and were in exacerbation longer. And any ONE kid will skew the numbers in groups that small. Where is the scale that says that 6.8 is subclinical? They used the "Tourette syndrome unified rating scale" Do you have a copy of the scale? Also, since you are the expert, can you explain if these pex kids got a different treatment than what they would be given today? They got replacement albumin. Does that happen with PEX kids today? It took 10-12 days to treat them..perhaps that was just because the machine were slower then, or perhaps they did more exchanges than they do today, I don't know. So, no I'm no expert - I'm asking a question. I've read from people that got PEX recently that it takes 3 days, and there is "no donor blood product" (Does that mean no albumin?). What I'm doing on the board - researching, asking questions, quoting studies, or posing discussions so that there can be meaningful debate. If there is an error or difference of opinion, I welcome being corrected or referred to the study or expert so I can learn more. I find your name- calling and insulting manner very off putting and unproductive, as I'm sure anyone reading this board does. I'd like to hope we have a community of support and welcome, so that more will stop reading, and start sharing. If you think that PEX works better for tics, and believe that there is enough data to support that - and you have hashed it out on the board before my time - a simple link to the thread is helpful (or "hey, I remember a thread a while back on this, you can search for it - I think the ivig group had almost no ticcers" that would be helpful . Name calling and insults aren't. In honesty, EAmom asked me for a link to the study. And in getting it for her, I quickly glanced at the chart that showed where all the kids end up at the end. And the ticcers in the ivig group was lower than the ticcers in the PEX group. That was the comment. But, I'm glad I went back and reread the whole thing, because I have a much better understanding of it, and specifically of its short comings in design. So, thanks for encouraging me to look at it again, but please - can we keep things a bit more positive. I've got enough stress in my life.

I would like to see something comparing one HD IVIG treatment to three HD IVIG. In the Swedo study - both groups continued to improve up to a year later. Most improvement was seen after 4 weeks, for both ivig and pex groups. But after a year - both greoups were still much improved from the one month mark. the kids in the study had pandas for quite some time. the kids average age was 10years 3 mos for PEX, and 9years one mo. for ivig. The duration of the acute illness or exacerbation before the study entry was 29 weeks for PEX and over 12 weeks for ivig. BUT, if you read before that statement the kids admitted had to be in - it looks like this was at least the second exacerbation, so the actual amount of time they had pandas is probably longer (and we know this is probably true, based upon how old we see kids coming to this forum...and when the parents think the symptoms started.) "Eligibility criteria were: a tic disorder, obsessive compulsive disorder, or both, that met definitions in the Diagnostic and Statistical Manual of Mental Disorders;17 onset of neuropsychiatric signs and symptoms before puberty; a history of sudden onset of signs and symptoms, or an episodic course characterised by abrupt exacerbations and periods of partial or complete remission; evidence of and association between streptococcal infection and onset or exacerbation of signs and symptoms (requirements for the P AND AS subgroup);10 and current exacerbation severe enough to cause significant distress and interfere with the child’s social functioning in at least two spheres (home, school, social relations)." Many of the kids were on medications. This was 20 years ago...meds like this weren't dispensed nearly as freely as today. It looks like only the most extreme of cases were in the study (it took them 4 years to recruit for the study)..and I'd think they would need to have symptoms for longer than 3 mos to be on meds like this...so appears that they were in exacerbation for approx. 7mos and 3 mos respectively. The 7mos could be skewed bcs the main ticcers were in that group, and tics have a habit of hanging on longer (in or out of exacerbtion). "It is intriguing that a single course of IVIG or plasma exchange gave such sustained treatment effects. The original hypothesis of our study was that both IVIG and plasma exchange would reduce symptom severity by blocking (IVIG) or removing (plasma exchange) the antistreptococcal antibodies that were cross-reacting with neuronal tissue.4–6 A single treatment course would therefore give lasting benefits if streptococcal infections were prevented by antibiotic prophylaxis. The hypothesis suggests that the rate of improvement with plasma- exchange treatment should be directly proportional to the rate of antibody removal. This improvement occurred in a few instances, with symptoms beginning to improve at about the time of the third exchange, and additional benefits shown after the fourth and fifth treatments. H owever, most of the children did not have such a direct response, and showed the greatest improvement in the days and weeks following cessation of the apheresis procedure. This pattern could also be predicted by the hypothesis, since the inflammatory changes caused by the autoantibodies would take some time to resolve. The model is unable to explain why symptom recrudescences occurred so rapidly after streptococcal infections (since titre rises appear to occur more slowly), or to explain the mechanism by which peripheral effects of IVIG and plasma exchange could be translated across the blood-brain barrier to give volumetric changes in basal ganglia structures.30 The actions of IVIG and plasma exchange are too broad to be helpful in delineating the nature of the improvements or in determining the pathophysiology of the neurospychiatric symptoms." I like to think of the donor ivig as retraining the body to release the correct antigen. There is a feedback loop - your body learns over time what antibodies to ask for according to effectiveness against an antigen. PAndas kids bodies release a "rouge" antibody, and the body keeps telling it to make more, because it is attacking stuff successfully with it (unfortunately that stuff is the bodies own neuronal cells). You could picture a gunner asking for a "red bullet" because the red bullets are good at killing stuff. and the ammo guy just keeps handing him red bullets. But the gunner is a jerk (and he' stupid, and blind too) the red bullets only kill our own troops. Flooding the body with one and a half times (or 2 times) the amount of immunoglobulin normally in it, shuts all bullet production down for a while, and the donor immunoglobulin knows the correct antibodies to ask for...So its like replacing the stupid blind guy with gunners that ask for blue bullets...the correct bullets for killing the enemy...no more red bullets flying around killing our own troops. Anyhow, that is how I think of it. If a sponge soaking up the bad ones works for you, I like that visual !! Apparently you are clean, and I've seen too many violent video games. We have to remember that she was using the strictest criteria to recruit for the study. Children with immune deficiency were not allowed in the study. Autistic kids were not allowed in. Underlying infections like Lyme and mycoplasma were not checked for. So perhaps kids with immune def. are more at risk for pandas, and need ongoing ivig. And "regular" pandas kids have a good shot at remission with one. As for older and longer needing more, the kids in the PEX group were older and had their latest exacerbation longer, but they had greater success overall. So, does it show that PEX works better? OR that there is no correlation between duration / age and success rate? The "greater success overall" could be a result of the way the study was designed and the number of variables and small groups she was comparing. As I've been looking at the study and all the variables, I've been thinking that designing the "new study" - the one that they are doing now - could take months, but, then I thought I bet Swedo's been thinking of how to redesign it for 20 years! Also, in Swedo's study "80% of the replacement fluid was 5% albumin" (remainder saline). and the process was done over 10-12 days...this is not the same as the PEX our kids are getting. I don't think(please someone let me know if this is correct or not - I have read that plasmapherisis and plasma exchange are different, and that what our kids would get today is plasmapherisis, not plasma exchange, and therefore todays "PEX"(which now seems to be interchangable for either pherisis or exchange), is actually not putting albumin back in. So, it is different. Swedo used donor blood product, (albumin) like ivig. It would be more like getting today's PEX and getting ivig the next day.( I think? Does anyone know?) What I take away from the study is that immunotherapies work. I don't think there is enough data there to support which one works better for what type of symptoms, or even overall. The groups are too small, and they aren't well matched. But that they work - compared to the placebo group - absolutely!

I don't need to check with Buster or EAmom. I can read too, and so can you - that is why I linked to the actual study. It depends on how you interpret the result. True, all the big time ticcers were int he PEX group, but in the end, the rating for both group was almost the same. IVIG was actually lower. What you cannot say is :"Ivig does not have as much success with tics as PEX. PEX sees an immediate improvement and ivig does not." There is not enough data to say that. In the END BOTH ivig and PEX brought tics down to almost subclinical levels. PEX started a lot higher (had both more severe and more in number) so therefore a much greater percentage improvement. But you don't know that IVIG doesn' work as well, so you can't say "ivig does not have as much success as PEX" Also, it isn't "immediate". here is a quote from the study " most of the children did not have such a direct response, and showed the greatest improvement in the days and weeks following cessation of the apheresis procedure." Does that say immediate? AND - I would argue that the stats in this study say that PEX works better for OCD (becasue there is more balanced data for that group). But in all honesty, you can't really compare two such small groups. I don't know why they used means instead of medians either, median means more to me. Now that is just from the study. From my own experience, my ds had an immediate cessation of a verbal tic on day one of IVIG. So I guess now I know where "PEX for tics" came from..I will go read that thread, but I will rely on what I read in the actual STUDY. And so should anyone else reading this thread.

I was just revisiting some studies. I thought this statement from Swedos and Perlmutter ivig and pex study might those of you trying to decide if they are "bad enough" to get ivig (or pex) and "what if it will just go away on its own?" I know when I was in that decision phase I was overwhelmed with information. Sometimes its hard to see the forest for the trees. "More than 80% of the patients who received IVIG or plasma exchange remained “much” or “very much” improved at 1 year, and their symptoms were in the subclinical range of severity. These results are particularly striking when compared with previous reports of the intractable nature of paediatric OCD and tic disorders; long-term outcome studies in OCD have shown that less than one third of patients had clinically meaningful symptom improvements." Granted, we don't know if that third happen to be the pandas subgroup of those disorders...but I'd say that is doubtful. Especially since Syndenham Chorea related OCD seems to persist for most SC patients (and that's very similar if not the same autoimmune mechanism causing it). Here is a link to that study, and Swedo's "First 50 cases" study. Hope they get that new study published in my lifetime! These are 20 years old. Sure, there are more studies backing up the science (esspecially cunninghm's CamK's, S.C., and the mouse study, but the ivig study they are "redoing" is long overdue. That's the one we are looking to for proof of treatment. http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf http://ajp.psychiatryonline.org/cgi/reprint/155/2/264.pdf OTHER HIGHLIGHTS FROM THESE TWO STUDIES: the improvement on PEX vs IVIG is the same at the one year mark - regardless of tics or ocd 80% of the kids in the ivig/pex study had tics - and tics were equally improved for both groups at one year. 17% of kids relapsed - and of those ALL had strep "break though" the antibiotic prophylactic. They improved with an additional ivig or pex treatment. Its a tough decision. I hope revisiting the only real studies we have on these treatment options helps you.

sorry for duplicate. Can't figure out how to delete in higher level.

http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf http://ajp.psychiatryonline.org/cgi/reprint/155/2/264 The first one is the pex vs ivig one done with Perlmutter. The second is is the "Frist 50 cases" pandasresourcenetwork.com has good links for most research:http://www.pandasresourcenetwork.com/about-pandas/researcher-information.html as well as http://pandasnetwork.org/impact-on-the-family/summary-of-vital-pandas-studies/ which I htink used to be "Buster's Corner"! My favorite thing to read when I first started ot research (and still basically is since I need to read each paper about 10 times to understand them) Seems like every time i read one i catch something I missed before - like the fact that cunninghams's Cam K II paper says "in the absence of symptoms" and no where else tell you how the kids became "absent of symptoms". Do you know where Buster found this out about cunningham's sera? Did Cunningham use Swedo's decade old sera(?).(!) According to this, the PEX and ivig worked equally well for tics. I dunno where all the PEX better fom tics comes from. Perhaps anecdotal from some docs experience? I made a mistake on either this thread or another where we were talking about tics. only 80% of the kids had tics (I thought they all did..but just checked that). "The children were evenly divided between those with a primary diagnosis of OCD (N=24, 48%) and those with primary tic disorder (N=26, 52%); 43 (86%) of the children reported obses- sive-compulsive symptoms, and 40 (80%) of the chil- dren were found to have motor tics. Boys outnumbered girls by a ratio of 2.6:1" As for your question on the number of kids that did PEX, it looks like it was 10 kids PEX, 9 kids ivig, but after the study was done, they allowed the placebo group pex or ivig, so it was 16 PEX and 12 ivig. "30 children entered the study and 29 completed the trial. Ten received plasma exchange, nine IVIG, and ten placebo. At 1 month, the IVIG and plasma-exchange groups showed striking improvements in obsessive-compulsive symptoms (mean improvement on children’s Yale-Brown obsessive compulsive scale score of 12 [45%] and 13 [58%], respectively), anxiety (2·1 [31%] and 3·0 [47%] improvement on National Institute of Mental Health anxiety scale), and overall functioning (2·9 [33%] and 2·8 [35%] improvement on National Institute of Mental Health global scale). Tic symptoms were also significantly improved by plasma exchange (mean change on Tourette syndrome unified rating scale of 49%). Treatment gains were maintained at 1 year, with 14 (82%) of 17 children “much” or “very much” improved over baseline (seven of eight for plasma exchange, seven of nine for IVIG)." Also interesting: within one year the % that required additional treatment: two of the PEX kids, and one of the IVIG kids. Total of 3 of 17 kids.(this is the origianl group - not counting he placebos that got treatment later) it is consisitent with Dr K's approx "20%" need another treatment. All of them had break through strep infections. "1 year follow-up At 1 year after treatment, 17 children initially assigned active treatment were reassessed (plasma exchange, eight; IVIG, nine). Three children had had a second course of immunomodulatory therapy in the intervening months. One child in the plasma-exchange group was retreated with plasma exchange for a symptom exacerbation 10 weeks after initial treatment, one was treated with IVIG at 4 months, and one in the IVIG group had a second IVIG treatment at 2 months. At the time of their symptom exacerbations, all three children had a history of streptococcal exposure and increased antistreptococcal titres despite prescription of oral penicillin prophylaxis."

ONE day at 500mg? That does not sound like it would do anything. my son, 97 lbs, full does is 500mg. He's been mostly on that for almost a year. Initally it was 10 days and drop to prophylactic does of 250/day, which we did for a while, but I would bump up (Dr gave me OK to) when exacerbating. And since ivig I've been too scared to lower it to 250 yet. I don't think a day will do much at the 500 dose, but if you feel better - maybe thats all it took to knock it out. On another note I tried oil of oregano for my sinus - it worked. I like it...got it by accident (was reading another thread for oil leaf extract) I think the oregano is stronger, but you aren't supposed to take for more than 2 weeks.

We used to use a method we called being put "on privileges" this is before pandas dx, and it worked pretty well, but may not work for a pandas rage. If ds was having specific things that were causing problems and it was going on for some time, we basically took all his privileges away, and he had to earn them back with specific good behavior. Since TV time, computer time, play dates, anything special, was a privlege, he only got something like that if he earned a tickets (or points) . So for example, if the behavior was doing simple expected requests like - homework time, or eating dinner without being rude about what was being served, and he got thru it and politely ate and cleared his plate, he would earn 15 minute on the computer. Like wise, if the computer is the issue, then usually its getting off it that is the issue, so he would get an additional 5 minutes his NEXT computer session if he got off when requested the first time. (and we always gave him a warning like- computer time is up in 3 minutes..) You can pretty much design your own program. But, I'd keep is simple and specific. I would usually put him on the program for 2 weeks, but the benefits would last way beyond. Granted this was pre pandas (or maybe not - since we think he's had some pandas-y times in his history..) So,its a stick and a carrot. He'd be looking for ways to earn TV and computer time after the first couple days. But then again, may not be the ticket for a pandas rage...and initially - he HATED it (of course he did - we were exerting control over him and making sure he knew that living in this house had many privileges that he took for granted). so, I'd consider it and maybe a very specific version of it to start if you think its something he could handle, which may not be the case if he is irrational (as I know my ds could be when exacerbating).

Fixit, I feel your pain. I mean this literally since it exactly the same struggle I've had in deciding how to treat my DS. I'm really not in a position to offer specific advice, as unfortunately it seems only you can make those decisions.) I nearly had a nervous breakdown before deciding to move ahead with ivig . I do wish we had done more lyme investigation prior to ivig, we are doing that now. (myco P as well). BUT - ivig has been nothing but good. We may need another one (or two) but it has helped us tremendously. there are some old threads that ask about ivig, and if people will do it again - I think 100% of the responses were yes...or close too it. YOu are on your way with the T and A. Not everyone turns back pages - and for most its a minor thing compared to exacerbation. All you can do is try to figure out the odds, and get the odds in favor of your son. I bet the T and A is more difficult than the ivig. After the ivig, I felt like it wasn't nearly as big a deal as I made it out to be. Actually, the T and A surgery probably far worse! Im not trying to convince you what to do, but, plan for the worst and hope for the best. You may be surprised. Sounds like you are near Dr L...I'd make an appointment if you haven't already. Its a marathon. We may be dealing with relapses and looking for signs until they are 20 or beyond. BUT, there is so much hope. I think you need to talk to Dr L or B, or whoever is closest to you, so that at least a specialist is making the decisions, and you can try to get some sleep at night. Best- norcal

so the augmentin was his first antibiotic? Thats great - glad to hear about your progress!

my son had some tics that disappeared with ivig. Day one of ivig - a minor throat tic - gone. He had a little eye blinking, and little head ticcing, gone in a couple weeks (these were very minor at the time of ivig) His major compulsion or tic? was looking into the sun very quickly - it looked just like a head tics, and if you didn't know he was looking for the sun, you would never put it into the category of compulsion - so we called it a compuls-tic. This took longer to go away, about 3/4 weeks, but its now gone. There are a number of threads on pex vs ivig. I started one a few months ago, you can search for it. We decided to do ivig because it seemed like there was less relapse. Theory being that pex offers immediate relief - removes antibodies from your own blood and returns your own blood, while ivig overwhelms your system with 1.5 times the amount of antibodies (or 2 times the amount), and there may be a mechanism for "retaining" certain cells, because the donor cells are functioning properly. Perhaps you should consult with a doctor that does both. If you are trying to get PEX I guess you will be because I think only one is doing PEX, and she is doing more and more ivigs from what I am seeing in posts on the forum. The ideal would be true plasma exchange - your blood is reomoved, cleansed and reinfused along with the donor antibodies. No one does that that I know of, but I do know that several people have followed up PEX with ivig. ivig does work for tics. I'm pretty sure that one of the requirements for swedos original ivig vs pex study was that the subjects had tics (not just ocd). ivigs worked for us for us (indeed all our tics are gone - we just have one really bad ocd thing, and some minor mood stuff - although I think that mood stuff mostly related to the ocd thing)...it works for lots of ticcers - look at lauren johnson - her sneeze tic started to resolve almost immediately...you can see it if you review the history of the videos on her. She still had some eye blinking going on (maybe sitll does for all I know) but very minor compared to complex motor/verbal tic that was her "sneezing". my ds was not in exacerbation at time of ivig. but when he exacerbated before ivig - he had horrendous painful head and neck whipping, that would last for hours each day. He'd have some calm periords - he didn't do it in the classroom much, but recess, at home, playing sports - it was non stop. He's had one cold since ivig, and although he's had a bit of a setback, he did not exacerbate, and did not start ticcing again. I can only speak from our experience, but for us the ivig has worked for the tics, but not the OCD!(its worked a little bit for it, but seems stuck now)

We've only had minor vocals, but I do consider them a lower level than the physical motor tics, sort of the first thing that shows up (like a little throat clearing) but also the last thing to leave. Sorry I don't have more. I do think looking at ivig might be something to consider since its been so long, but I still think you need to let things settle. I like to evaluate our situation week to week, since daily ups and downs can swing pretty fast and the disease seems to get better (or worse) in waves. No motors is great!! And no screeching - so it looks like things are looking up. We are 8 weeks post ivig, and we've seen some symptoms disappear, but we still have a couple that are almost unchanged...just stuck(intrusive thoughts). So, I don't know if that's as good as it gets, or if he needs another ivig, or if he will continue to improve but at a slower rate than the first 6 weeks after ivig. DS had pitand. I'm assuming your son has classic pandas and only reacts to strep exposure? In which case, maybe removing the strep and keeping him from reinfection will be enough only time will tell. Either way, getting rid of those tonsils sounds like a very wise decision.

That's great! keep us updated! I love to see the teens doing well - I don't think many have really dug into to look at how they do vs the under 10 crowd. What were you on prior to augmentin?

I haven't read cure unknown yet, but one of the reasons I did ivig as soon as I could was because potential changes in the rules or standards (or lack of them)might make getting ivig even harder than it already is.I just had this feeling like EAmom and Fixit said - like we might be in the sweet spot at the moment. When governing bodies like that become involved it is generally the "greatest good for the greatest number" that is their concern..not necessarily what is best for the individual. With all the "controversy" you never know which way the pendulum might swing. Bronx - funny - stirring the anitbody pot...I wonder if you will get page turning every time. Theoretically it should get easier and easier each time right? The additional ones will just further suppress the bad antibodies. We didn't have bad page turning. strange moments here and there - but then again ds was not in exacerbation. Just the cold caused the set back. He's been pretty stagnant since the cold. Not slipping further tho, so I guess that is good. I just wonder if there isn't some evidence of when more is needed - once the kids is a certain age, or if it is PITAND vs pandas, blood test..something. I DO think that different kids need different treatments - heck, some kids get better on antibiotics alone. Some kids do get better on one ivig. But which ones? And, is there value in doing two (or more) within a certain number of months, or if wait for relapse is the way to go... Thanks for all your support! I just spent a couple days away with some girlfriends and I'm feeling very refreshed. I worried a bit - calling and checking in on DS's status, but he's still here and unscathed by my absence...highly recommend it! EAmom - thanks for the reply on the cunningham study and PEX. VERY interesting - since a fairly good number have the same cam K II after the PEX, but no symptoms. Maybe it just takes longer for that to fall in some kids (or maybe those kids are the ones that relapse... I feel like I could learn so much if I could just get my hands on her data!!!)

thank you for all your replies! I'm not sure I can get too much further ..but I do think discussing what the common symptoms or test results you all have will help folks that don't know if they have any reason to check out lyme (me!) will help them decide. BTW with he new numbers that would bring the median up to 168. I did leave michaels in there, altho he is an adult...with out it it is 163... and the range is 137-184. My nephew gets his lyme test back in a week or so. His cam K was 181 (not in exacerbation) and my son's is 176 (not in exacerbation - we have not doen lyme testign yet) so, you see where I'm going with this? A higher score (esspecially at baseline - not in exacerbation) may indicate you are more likely to have lyme. I'm not sure I can say that based upon this very informal survey. I will let you know if MC gets back to me. It of course doens't mean you can't have it with a lower score, I'm just looking to see if I can find some likelihood, some percentages.. So, lets keep the discussions going - I'm really interested in what the neuro-physchiatric lyme group has in common, and what clues might separate them from the "regular" pandas group. Two people that responded said they are chronic - or they didn't have exacerbations..is that the case with more of you? Or maybe ivig failed? What else?

IVIG has been good for us. Contemplating another. We are on Azith - that has also been good for us. I'm comforted to know that Zith is good for bacteria that don't have cell walls, like certain parts of lyme and myco P. I don't know anything about Biaxin..I think I've read it is one of the ones you can only take for a shorter peroid of time, and I assume is a good one for myco P. Good luck to you with your decision! That is much harder than the actual procedure.

If you look at cunninghams Cam K II study, 5 of the 16 pandas kids had less than a significant drop in cam K II in "convalescent" measurement. This is in chart on page 3. I have sent her an email asking what is "convalescence"...were all/some of these kids treated with ivig? And when was the blood drawn post ivig? I cannot find in the study if the kids had ANY treatment, I would think that would be mentioned in there somewhere. Her study just says "sera obtained in the absence of symptoms". I've been assuming these kids had ivig. Was that anyone else's assumption? where'd I get that? Part of the study shows results from igg depleted serum,but that's just removing the igg from the blood sample. So perhaps for some kids the removal of the antineuronal antibodies ( IF kids in the study had ivig) made symptoms go away, but Cam K remained high for some reason (and maybe for those there is some common factor...like those are the ones that had PITAND, or those are going to relapse when they get a cold, or those are the ones with a lyme infection as well) Does anyone know about the "convalescent" sera in her CamK II study? I think for a while she was taking sera measurements for her study post ivig? I know a few people on the board did post ivig measurements - was that at her prompting as part of the study ?

KIM - thanks for the tip on the 5htp! Bronxmom -Insurance coverage isn't what drives the question of how many ivig's for me. It's what works better. You are just one of many doing more than one, you aren't stirring the pot, we appreciate knowing what different doctors are prescribing. Some are doing every 21 days - like is done for some primary immune deficiency conditions (but at lower dose than HD). Some are doing 3 every 4 weeks(?) some 4 or 5 every few weeks. Like EAmom said, seems like your dose depends more on what doctor you live near (or decide to travel to) than to you child's particular profile. Since we don't live near any of them...I guess I have to decide where to go, so in a way, I'm decided how many doses he gets, not a doctor...this is the kind of thing keeping me up at night. There isn't any proof that more is better. Doing 3 over 3 months may have the same percentage rate of effectiveness as doing one. There aren't any studies. We always think more is better. And if someone is getting more for their child, and its better, of course I want my child to have the same treatment. Although, Dr K did mention that he found (through trial and error) at least some anecdotal reason to believe that 1.5 worked better than 2 as a dose, so in that case I'd lean toward more isn't better since he's done soo many more of these for pandas kids. He's the only one that has pandas kids from 10 years ago that he has treated and has been able to follow. The other players are relatively newcomeers. The only problem with that is...i'm not certain how closely Dr K follow them! For how many did one ivig fail, and then, they moved onto another doctor. He may not know. ..I know that I have not gone back and relayed to the 10 or so doctors we've seen in the past year that I am moving on and why! Right now I'm leaning toward trying to get another one. If he test neg. for lyme. And the timing is another thing that the docs seem to vary on...every 4 weeks, every 6 weeks...etc..So, the dose, the number, and the timing... I don't want to subject my ds to the risks and drama of another ivig if there isn't proof that doing two close together is better than one. Thats a bigger question for me, even though I will be trying to get that ivig before the end of the year!-That's on the off chance my insurance does pay - our huge deductible won't reset. So, yes insurance is effecting my thoughts, but more on a how-to-get-them-to-pay level, not on a what works better level. Thank you for letting me know how your doctor is treating you. I take it that in between or after he does not do any tests? I was hoping that if you buy into the idea that the particular autoimmune mechanism that causes the symptoms is related to the anti-neuornal antibodies (and cam KII levels) that maybe one of the doctors out there was measuring these between ivigs (or at least at the end of the 3 in a row) to see if they dropped. But doesn't seem like it. Maybe the ivig messes up your levels for so long, you can't tell your real levels for some time. Thanks for all your responses and the info!

That great news - thank you for sharing! Im a little confused, is mycoplasma a co-infection of lyme? I thought it was l"walking" pnemonia? Does having lyme make you more prone to getting myco-p, or is it carried by the tic?

Here is the note from Igenx. The customer service was very prompt in replying - you might want to ask if antibiotics can effect the test results for the other tests you took. Good luck to you - I'll be watching for your posts, sounds similar to ours (pitand?) I am wondering if you are doing ivig # 2 becaseu of a relapse, or if you were presecribed 2 or more intiially. Best- From: Customer Service [mailto:customerservice@igenex.com] Sent: Monday, October 04, 2010 2:03 PM _________________________________________________________________ Subject: RE: Inquiry from Website He can do the 4090 panel if he is on antibiotics. The cost is $260.00 for the test. We can mail the kit to you just let me know if you need it. Toni Sent: Monday, October 04, 2010 11:47 AM To: customerservice@igenex.com Subject: Inquiry from Website Message: I would like to test my son. He is on phophyactic antiboitics. What tests would be most appropriate for him? He is 11 years old, and has p.a.n.d.a.s. He also received ivig 9 weeks ago. Does he need to wait to take the test?

Seems like you done alot already. Like the lyme testing, and myco P. What antibiotic is she on? IVIG was scary, but once we did it, it wasn't as bad as I thought it would be. I'm ready to do another if needed...and it took me months to get to a place where I was convinced to do the first one.

never...they didn't video tape it.(talking about the one in philly) AGGGHHHH. so annoyed. just got reply back from them. with today's technology why don't they could do a live broadcast for almost nothing and get alot of $ from people that can't travel to the conference that day?