Alex

Wendy, Thanks for this great post. I really appreciatied this information and it certainly would explain some of the things we are seeing with our son who is 8 weeks out from IVIG. Alex

I believe he was willing to help some of these PANDAS kids and so did immuno testing to look for any immunodeficiencies, and then he could treat with IVIG and hopefully have it covered. I'm not clear if he is doing monthly based on the immunodeficiencies or if he is now following Dr. K's protocol, I think 'Alex' here asked Dr. B. to consult with Dr. K.? I still wonder if there is any difference (re outcome) in the kids that have deficiencies as opposed to those that don't, I mean, not all PANDAS kids do. I didn't actually ask Dr. B to consult with Dr. K. I called Dr. K after we started monthly IVIG because although I thought and still think that Dr. B is fantastic, he was fairly new to treating PANDAS, and Dr. K has been doing it for years. I wanted to run the treatment we were giving our son by Dr. K to get his opinion. His opinion was that it was wrong to do monthly low dose for PANDAS and he told us that several other families had contacted him concerning the same subject. I was told later by one of the other parents involved that Dr K. and Dr. B had spoken and that it was Dr. K who initiated contact becasue he feels so strongly about this subject. The doctor I did ask to consult with Dr. K was Dr. Trifilletti because their approaches to PANDAS seemed so different, and they are so prominent in the treatment of PANDAS that I hoped they would consult with each other and find some common ground. I felt we parents were getting some mixed messages with one of them opting for IVIG (in certain cases) relatively quickly, and the other attempting all sorts of antibiotics for an extended period. Don't know if they have talked but apparently a lot of the big PANDAS doctors will be getting together to compare notes this summer, so hopefully there will be a more unified apporach for treating PANDAS in the near future. Angela, so glad you had a good appointment with Dr. B. Good luck with all the testing and with insurance coverage for IVIG if you go that route. Alex

I'd say my son was moderate PANDAS when he had the high dose 8 weeks ago. He was in a terrible state, and because of his rages, the family too. But compared to excorcist stuff I've read about I'd say he was moderate. Did you see Amy S' post about 17 months after IVIG update. Sounds like her child had PANDAS the worst of the worst and is now doing great. If you want success stories, contact the creator of the pandasnetwork website, Diana Pohlman, thorugh the link on the website and she can give you many. Good luck, Alex

Our son had what was to be the first of monthly infusions of IVIG in January at a dose of 1.0g/kg of bodyweight. Several weeks after the infusion when the improvements we saw initially had disappeared, we contacted Dr. Kovacevic to ask him his opinion on IVIG for our son. Dr. K as they call him, who has treated in excess of 500 PANDAS patients, was adamant that 1.0 g/kg was too low of a dose for PANDAS and that monthly infusions were also wrong for PANDAS. In laymens terms as I remember, he said that a minimum of 1.5 g/kg was needed to put the autoimmune portion of PANDAS in remission or cure it or whatever you want to call it. He said that this amount was mathematically derived. He also said that doing the infusions monthly was bascially stirring the pot too frequently when what was needed was a chance for the immune system to settle down and reboot itself. That same week that we contacted him, several other families had also contacted him, all whose children were doing monthly infusions with little postive results. Dr K. took it upon himself to contact the doc doing the monthly infusions, Dr. Bouboulis, a fantastic, brilliant immunogist(same doc who was on the Today Show with Lauren Johnson, the girl with the sneezing tic) to dicuss IVIG dosing. Dr. K convinced Dr. Bouboulis to change his protocol to the higher dose of IVIG, 1.5 g/kg minimum and to do it only as needed, possibly only once if that's all it took. So obviously Dr. K's rationale, reasoning, evidience, were sufficiently convincing to change Dr. B's mind. I am not saying that this makes it fact that it is wrong to do the monthly low dose. All I am saying is that the doctor who has treated more PANDAS than anyone with great success says that monthly low dose is wrong and that his argument is apparently pretty darn convincing. I did see a post on the forum a month or so ago about an adult with OCD who did monthly low dose IVIG and over a period of six months or so the OCD completly dissappeared. So maybe low dose monthly works in some cases. Dr K believes that IVIG becomes less effective as the person with PANDAS becomes older. Maybe instead monthly low dose works for teens/ adults. Who knows? Personally, since my wife and I decided that for our son, the potential benefits of IVIG outweighed the risks, we were open to trying both. If Dr. K's approach doesn't work, we'll probably try monthy, provided we could get it covered by insurance. What I wouldn't do is give up on IVIG if I had tried only monthly or only high dose without giving the other a chance. For what it is worth, my son is 8 weeks out from the high dose and is doing pretty darn well. The changes have been really dramatic, and the biggest changes didn't start happening until we were 6 weeks post IVIG. Hope this helps, Alex

So sorry for what your daughter is going through. What are your thoughts at this point on IVIG? Have you corresponded with Dr. K? Alex

Unfortunately any discussion of PANDAS is clouded by the medical skeptics like Roger Kurlan, or as I like to refer to him, that ###### ###### Roger Kurlan. By basically denying that PANDAS even exists, guys like him further confuse the issue on what's already a complicated illness, allowing still a pretty significant percentage of docs to just say that they don't believe in PANDAS. I have to disagree with LLM though when she says there are no unequivocal succes stories yet. I've even seem them on this forum, but the nature of the forum is that they get posted and then dissappear off the first page after 24 hours or so and are forgotten. How often can we expect someone with a success to get on here and tell us? PANDAS-Chicago is a good example. Who remebers her story of her son's recovery? I think she said it took a couple of years after IVIG until she felt he was completely recovered. I'm glad she shows up on here every once in a while but I bet most have never read her success story. I think one of the points of Diana's e-mail was to be encouraging. She said she has loosely followed 60 families and the majority are greatly or completely better. There you have it. There are your success stories. The now 17 year old girl had ups and downs for a couple of years after IVIG but now is 100% PANDAS free. But as we can all relate, her mom has a hard time talking about it still to this day, 10 years later. Maybe she's afraid she is tempting fate by saying it out loud, another reason I think you don't see parents on here going on and on about how well their children are doing. It certainly seems like for the vast majority the recovery is protracted. So if the parents post, they have to add caveats to the good stuff. As things get better slowly, they are on here less and less, post less. By the time they get to full recovery, hopefully they are stand up individuals and get on here and tell us their story, but if they do, it's off page 1 the next day. I am confident that my son is not going to live with PANDAS. It will be in his past at some point. I think the evidence is supportive of me believeing that. He is seven weeks post higher dose IVIG and is doing well. I could add some caveats but feel strongly that someday I won't have to. Alex

Only replying to keep this post from dropping off the first page into oblivion. I assume most of us got this in the home e-mail. If not, lots of good and encouraging info here. Thanks to Diana Pohlman and the other folks helping her for their amazing work. Alex

Hi, My son had Plasma Exchange last summer. I think each round exchanges about 70% of the plasma, so one round means you should have about a 70% reduction in harmful antiboidies. 3 full rounds results in like 98% exchange if I am doing my math correct. So one round does some good but pretty far from the full 3 rounds. If I were to do PEX again, I would insist on a fairly robust dose of prophylactic antibiotics for an extended period after the PEX to reduce the odds of a strep infection as much as possible. Also, I would make sure to follow the PEX with a higher dose of IVIG, at least 1.5g/kg. I have yet to see a PEX experience on this forum that didn't have some level of relapse down the road. They may be out there, but I haven 't seen it. The IVIG, according to Dr. Kovacevic, one of the foremost PANDAS docs, is to reset the immune system. He told me that after PEX, even though the antibodies are temporaliy removed, they come right back with a new strep infection or possibly even with some other immune challenge. That's why you do the IVIG. Mom Md who posts on here has had one of the best PANDAS outcomes I have seen. Her son had PEX followed by IVIG several months later. She might be a good one to contact. Good luck, Alex

Hi Melanie, If you decided to give Dr. K a try, you don't have to go see him. You can do a phone consult. I have mentioned before that Dr. K thinks that monthly low dose IVIG is the wrong course for PANDAS. He has been treating PANDAS with IVIG for years and has much experience with it. For what it's worth, Dr. Bouboulis, who was on the Today show with Lauren Johnson the other week, changed his PANDAS protocol from monthly low dose to infrequent high dose after consluting with Dr. K. So obviosly Dr. K must have been very convincing in his reasoning to change the mind of a very talented and highly regarded immunologist. Also, I know from experienece that Dr. K is more than willing to consult with other physicians concerning his protocol and his reasons for believeing that low dose IVIG does not work for PANDAS because he consulted with our pediatrician. Dr. K is very good about returning e-mails. Send him a brief e-mail telling him what dose of IVIG you have been giving your son and that you don't think it is working. Ask him if he would be willing to speak to your doc. His email is DrK@webpediatrics.com. Good luck, Alex

Dear Worried Dad & All-- We take the cake for a situation like what this thread is about. We have Dr. K saying "*^$%$#^^*, I have NEVER seen anything like this before!!" Dr. T said about the same thing with this recent line-up of strep antibody results. Are you ready?? We had the family all run in Dec. at my INSISTENCE despite negative strep cultures. Hold on to your pants--I think we need a prize!!! Our PANDAS son started spiraling 2 1/2 months post IVIG after encouraging improvement. We postponed his second one scheduled for this week, untill we unravel this. Our dd15 was dxed by Dr, K in Dec when symptoms of adol PANDAS really came to a head. He put her on HD Augmentin. Total abx for about 6 weeks. Symptoms started creeping & became apparent that "we're backkkk!!" Dr. K said run the titers on her. I said do the whole family. WEeee! (These were run at Mayo) :blink: DS11 pandas IVIG oct09 hd Augmentin since then pre IVIG 780/1360 post IVIG 2 1/2mo 378/580 5 1/2mo post IVIG 378/5440!! DD15 adol pandas dx dec 09 6 weeks abx dec09 752/5400 3/09 752/7800 dd13 dec 09 neg/177 3/09 neg/960 dh dec09 189/1920 3/09 189/7860 myself dec09 756/1920 3/09 752/5440 We are at a loss. Our GP has a call into some specialists. Not sure what will be next. We were all on Augmentin HD for a month in Dec. Dr. K seemed to think that would do it. Not sure of his thoughts now. He's not saying much! I think Dr. K has had some situations like Worried Dad and ours recently. I hope something is being gleaned. In both instances we have had to push for titer checks in teh absence of positive cultures and we had an IVIG probably fail because we returned our kid to a strep factory. Dawn PS--No, I didn't miss a decimal point in those numbers. You are welcome to throw out ideas, b/c we certainly are baffling the docs. I've hesitated posting this, thinking you all would think I was nuts!!! Hi Dawn, Is there anybody or anything that the family has frequent exposure to that could possibly be the untreated strep carrier responsible for constantly reexposing all of you to strep such as somebody your daughter babysits for or your dog? A serious process of elimination might help you find a culprit. Good luck and sorry for family's struggles. Alex

Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement. Dr. T Dr. T. Why wait until May? We know Dr. K is fairly quick to recommend IVIG. You prefer to try other avenues before proceeding down that path. You and he are probably the leading voices on PANDAS treatment. You care deeply about the patients which is so admirable. With that in mind, it doesn't make sense to delay a meeting of the minds when the two of you are giving confliciting advice. At a minimum you could get a head start on what will be discussed at the think tank. Actually Dr. K is not "fairly quick" to recommend IVIG - my son was treated by doctor K over 5 years ago...the process being antibiotics - , steriod treatment, weekly blood draws doing DNASE testing - after 6 months of his DNASE not going below 950- Dr. K then opted for IVIG - now...being that he has treated hundreds of PANDAS children all over the world - and that he has a huge success rate in treating this kids - I think he has fine tuned his process..meaning that ..my son received IVIG a total of 6 months after onset - if a child comes into his office who has been suffering with pandas for lets say a year or two - ....from onset ...and Dr. K treats him with Steriods...(due to no active strep) - antibiotics won't work - and symptoms still remain ...next logical step is IVIG - which would be 12-24 months from onset...The timeframe of treatment is determined from onset of the disease. IVIG - is VERY safe and is used for MANY MANY other illness - PANDAS_Chicago, I think in certain cases Dr. K is fairly quick to recommend IVIG. Given what he knows today after 5 more years of treating PANDAS from when you first saw him, I wouldn't be suprised that instead of 6 months of blood draws and antibiotics and steroid treatment that he would do the phone consult with you and recommend IVIG. That doesn't mean that that is a bad thing, because it is based on years more of experience treating similar cases. When we first consulted with Dr. K last spring, we gave my son's health history which included an explosion of PANDAS symptoms the month prior following an untreated strep infection followed by several weeks of antibioitcs which helped but did not eliminate symptoms. We also realized during the phone consult that my son had a prior milder PANDAS episode several years earlier from which he never completely recovered. Based on the emailed medical history and the phone consultation, Dr. K recommened IVIG. No further antibiotic tests, no steroid burst. Why did he go right to IVIG? Probably becasue five years prior in similar cases he was trying months of antibiotics and other things to see if he could take care of the PANDAS that way. At some point with certain types of cases he decided that there is no reason to pursue that course becasue he found it doesn't work. My wife and I of course got on this forum and listened to the various opinions of the other parents and pretty much talked ourselves out of IVIG. Pretty soon we're trying various supplements, throwing out our portable phones, seeing an acupuncturist, having my son wear a tinfoil hat in the shape of a pyramid to concentrate the universe's energy and so on. Then ten months later where were we? Back to Dr. K and following his advice. My point is that at this point, if a PANDAS parent consults with Dr. K and he says IVIG then it is because he has treated hundreds of similar cases, many of which in the beginning I am sure he tried anything and everthing before resorting to IVIG. At some point, in the cases that met the criteria, it no longer made rational sense to pursue those avenues because they proved ineffective. With SF Mom's younger children, their cases are probably different then those for which he now fairly quickly recommends IVIG, and also they are younger. Since in Dr. K's experience he has found that IVIG doesn't seem to work as well as a child approaches puberty, in the older kids he probably feels it is important to proceed with IVIG to maximize the benefit. Bottom line, if Dr. K recommends IVIG, he is doing so based on his vast experience. Ask tough questions, seek other opinions, try other approaches, but give the man's perspective its due respect. In regard to Dr. T and Dr. K differing, they are both brilliant, dedicated, and caring physicians that want nothing more then to help our kids. If they have knowledge that the other doesn't, like Dr. T having good IVIG success with older kids or good succes with other antibiotics then it doesn't make sense for them to delay sharing that knowledge with eachother. Alex

Dr. T, With all sincerity, you are awesome! Thanks for all you are doing and all that is yet to come. Alex

Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement. Dr. T Dr. T. Why wait until May? We know Dr. K is fairly quick to recommend IVIG. You prefer to try other avenues before proceeding down that path. You and he are probably the leading voices on PANDAS treatment. You care deeply about the patients which is so admirable. With that in mind, it doesn't make sense to delay a meeting of the minds when the two of you are giving confliciting advice. At a minimum you could get a head start on what will be discussed at the think tank.

Cure is a strong word, but it is the word Dr. K uses on his website. Here is the quote. "IVIG appears to be the treatment of choice for PANDAS. In properly diagnosed cases IVIG treatment can be expected to result in a complete and lasting cure of the condition in a significant number of cases." The question is did Dr. K come to a statement like this lightly or did he arrive at this conclusion after years of treating this disease? Again, he has the most experience treating PANDAS. Maybe he tried for years to get kids to full remission using antibiotics alone and in his judgement it didn't work. When we first did a phone consult with Dr. K last year, we had provided him with a health history that included a period several years ago when my son developed severe separation anxiety and was having intrusive thoughts. We were new to PANDAS and until that moment didn't realize that this previous episode was actually a milder PANDAS exacerbation. Through Dr. K's extremely perceptive questions, we realized that even though we went on with life as the first episode faded, my son never truly returned to his old self. He was more anxious, needed a few rituals in his life to feel comfortable and was not as lighthearted, and probably some other stuff we aren't even aware of. I think for those parents who are convinced that their children have recovered from PANDAS from antibiotics alone, it is important to ask yourself some hard questions like, is my child an anxious child, is my child talkative, is my child comfortable around adults or children they don't know, is my child easily irratable, does my child have limited interests that they focus on excessively. I'm sure Dr. K could ask even better questions since he's smart and this is what he does. Even among docs who treat PANDAS there are those who would say these kids start out predisposed to anxitey and OCD. More likely I think is that these kids have had previous mild PANDAS episodes from which they never truly recovered. For me the question is, is mostly recovered good enough? If I was confident that my son had fully recovered and was truly functioning at his full potential from antibiotics alone, I absolutely would not have done IVIG. But for me, mostly recovered and funtioning well would not have cut it if I new there was an avenue that provided the hope of greater gain. Again, what I'd really like is for Dr. T and Dr. K to compare notes and see why they have a different opinion on this. Alex

No worries. I'm sure you are a hero to the Johnson family and many of us on here. Keep up the good work. I'd love to know if you and Dr. K have compared notes and see if each of you could gain from the others knowledge and experience. Alex

As many of you may know, I tend to use IVIG as more of a last resort than an initial therapy. IVIG is used extensively throughout adult neurology to treat a wide variety of conditions, many of which occur in the elderly http://www.ncbi.nlm.nih.gov/pubmed/12499469 I have not been able to find any evidence in the medical literature to suggest that IVIG efficacy for any condition trails off markedly after puberty. If anyone else has, please let me know. Almost all of the PANDAS patients I have treated with IVIG have been post-pubertal, young to mid-teens. Response has been very good and long lasting. Now that we are considering multiple etiologies behind "PANDAS-like" illnesses, i.e. not only strep but also mycoplasma and "Lyme-like" illnesses (Bb-lyme and anti-flagellin, it would seem to me that efficacy of IVIG likely depends more on the underlying etiology rather than before or after puberty. If the idea of "accumulation of co-infections" is an important one in PANDAS, the older one is, the more chance of accumulating co-infections - and perhaps increasing the difficulty of treating fully with IVIG That being said, Dr. K likely has more experience than any doctor in the world regarding use of IVIG in the treatment of PANDAS and his personal dataset on IVIG-treated patients is far larger than mine. I think Dr. K's views may have encouraged parents of older pre-pubertal children to expedite consideration of use of IVIG. I have a great deal of respect for Dr. K and his efforts, and he could be correct and/or simply looking at a different population sample. My point is IVIG should almost never be a rushed decision. It is serious immunomodulatory therapy. It is my opinion that, other perhaps in extremely severe (usually "Exorcist syndrome" level) PANDAS, one should carefully evaluate a child's immune system prior to giving IVIG. For example, it's fairly well-known that patients with IgA deficiency or anti-IgA antibodies are at much higher risk for adverse reaction upon IVIG infusion http://www.ncbi.nlm.nih.gov/pubmed/17923072 Dr. T, I think the question of wether or not to proceed with IVIG for our children is perhaps the biggest question we all face. The fact that you are slower to move on to IVIG must mean that in your experience you have cured PANDAS with antibioitcs alone. I discussed this very topic with Dr. K on several occasions. He says that in his over 500 PANDAS patients, he has exactly 1 and only 1 cure of PANDAS with antibioitcs alone. And that one case was a true intitial onset caught and treated very early. He also has told me that in his experience, parents see a lessening of symptoms after an exacerbation and basically forget the way their child used to be, accept the new altered child and move on with life. There was a post on here the other day of just such an occurence where the mom assumed that the child was completely in remission from PANDAS for several years until a new exacerbation. When the girl was treated with IVIG after the most recent exacerbation, intrusive thoughts that she had been living with for several years, making her life ######, dissappeared and she was able to finally tell her mom how terrible her life had been. My question to you is, how many cures with antibiotics have you documented? Have these children been free from future exacerbations? How long have you followed them? Also, whether you like it or not, you and Dr. K are the country's leading voices on PANDAS now. Dr. K says without IVIG, no cure. He has treated 500 patients. Have you and he spoken about this issue, compared notes and cases and figured out why you differ in this area? Thanks so much for all you are doing, Alex

Alex, How are things since the IVIG? Any changes yet? Positive or negative? Which hospital did you go through and how was that experience? Angela Angela Hi Angela, Things have been somewhat better but it is way too early to tell at this point where they are headed. I will send you a pm about our experience, etc. Just wanted to address the whole issue of high or low dose IVIG again. I just wanted to emphasize that it is not my personal opinion that low dose monthly IVIG does not work for PANDAS. I am not that smart to have an opinion on it. It is Dr. K's opinion. When we spoke with him last month and told him that we were on the path of doing monthly low dose IVIG he was absolutely adamant that this was not the right approach for PANDAS. Because of our phone call and several others from families having poor success with monthly IVIG he called the doctor who was prescrbing it, himself a brilliant, talented and highly regarded immunologist and convinced him to change his protocol to a single or infrequent infusion of at least 1.5 g/kg of IVIG. Dr. K told me the reasons, but it is not my place to try to explain them, even though I did that poorly on a previous post. The main point I would say is that Dr. K has treated more PANDAS patients then probably all other physicians in the country combined, 500 or more. He has a fantastic track record. Dr. T referred to him on this forum as the 'God of PANDAS' or something like that. And Dr. K says dont do low dose monthly IVIG. I am so glad that Shaesmom's child is having success with the low dose monthly IVIG, but from all I can tell, she is the exception. I just got a private message from a mom whose child was getting low dose monthly IVIG and is having a really hard time. They did a phone consult with Dr. K who advised them to wait at least 3 months before another infusion to let things settle down becasue doing it monthly is constantly stirring up the bad antibodies and not letting the healing take place, or something like that. So, if your physician has treated a handful of PANDAS patients and says low dose monthly IVIG is the way to go, they are disregarding the one and only study done on IVIG for PANDAS, which used high dose to great success, and they are ignoring the approach of the Doctor who has done the most to advance the actual practice of treating PANDAS, Dr. K. (Dr. T will be right up with him someday I'm sure!!!) And the best part is, you can e-mail the man and he writes you back, and he will talk to your doctor if you want and they can hash it out. Maybe your doctor won't agree, who knows. Good luck to all, Alex

MomWithOCDSon, So glad things are going well!!! Interesting and exciting that Sammy was not just a fluke. It makes a good point to anyone who has given up on Augmentin that you really don't know if it will work until you have tried the extended release version. Good luck on continued improvement. Alex

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex I guess you are against monthly IVs according to your Jan 2010 post you were having monthly IVs with Dr B? Melanie, The reason we changed course from monthly was we talked to a group of parents who were doing monthly without positive results, and I talked to Dr. K who explanied why it doesn't work. Also, after talking to Dr. K, Dr. Bouboulis changed his protocol, and to my understanding, doesn't do monthly IVIG for PANDAS anymore because he now believes it is not the right approach. Alex aLEX, Have you completed a high dose of IV ? I will speak with the md Dr K will speak with our Md Or do I have to pay his fee first? Melanie Melanie, We did the high dose a week and a half ago. We plan on waiting at least 3 months before we consider another one. I don't know if you will have to pay Dr. K's fee, maybe not if the contact is between your MD and his. Our pediatrician wrote him an email and he wrote her right back. We didn't pay any additional fees but we had recently paid for a 1/2 hour phone consult. The explanation I got for why low dose monthly doesn't work for PANDAS is that one, it isn't enough to turn off the immune system for a while which is necessary to change the autoimmune process, two, doing it too often is like aggravating a wound that is in the process of healing, and three, some of the antiboidies that get introduced through IVIG are the very ones that are causing the problem. That is why kids often flare initially before the improvements start. I do not want to present myself as some IVIG expert. But when it comes to PANDAS, I believe strongly after flailing around for a year that Dr K. is the undisputed PANDAS expert. Certainly possible that your MD, who I'm sure is fantastic, my hear his explanation and disagree. Most of alll, good luck and there is nothing I want more then for all our kids to get better. Alex

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex I guess you are against monthly IVs according to your Jan 2010 post you were having monthly IVs with Dr B? Melanie, The reason we changed course from monthly was we talked to a group of parents who were doing monthly without positive results, and I talked to Dr. K who explanied why it doesn't work. Also, after talking to Dr. K, Dr. Bouboulis changed his protocol, and to my understanding, doesn't do monthly IVIG for PANDAS anymore because he now believes it is not the right approach. Alex

Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex

This brings up a great point. I spoke to Dr. K 10 months ago shortly after my son's PANDAS exploded. He told me at the time that in the over 500 cases of PANDAS he has treated he has only had one complete cure from antibioitics alone, and that was a true initial onset caught very early. He has had hundreds of cases of complete cures through IVIG. This forum is deceptive in my opinion in that you get on here and people talk about supplements and DAN doctors and epsom salt baths and on and on and on. You may do as we did and consult with a DAN doctor and cut out wheat and worry about yeast and try other treatments and talk about small improvements and then have relapses and get back on the forum and ask questions and try more things and still not have a cure. I read a post a few weeks ago, something like 'A year later... my happy son'. I couldn't wait to read the post and then read it and was discouraged. It was a mom whose child, after a year of supplements and minimal antibiotics was doing a little better. Realize that for the most part the people posting on this forum are the people whose children are suffering from PANDAS. They get on here in desparation looking for some answer from other parents whose children are also suffering. Guess where the parents are of the children who are not suffering from PANDAS are. Out living life. EAMOM is an exception. Her husband Buster, a research scientist, put the full power of his research skills into studying PANDAS when his daughter got ill. In my opinion, he is quite possibly the most knowlegeable person on PANDAS in the world. And guess what treatment he and his wife chose after a phenomenal amount of research they did that I think only a tiny percentage of the rest of us would be capable of, IVIG. And guess how his daughter is doing, fantastic. After all our fooling around for the last year, we finally listened to Dr. K and had my son get IVIG following his protocol last week. The process of IVIG is no big deal. The child has an IV in for 6 or 7 hours over two days. It doesn't hurt any more than giving a blood sample and the side effects are usually relatively mild. We will keep you posted on the progress. The world leader in treating PANDAS, Dr. Kavocevic, adivised IVIG. My advice would be to listen. Good luck, Alex

Melanie, here is the link to the study. http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf Also, you might try having Dr. Kavocevic talk to your MD. He convinced Dr. Bouboulis, an amazing immunologist, to switch his protocol from low dose monthly IVIG to higher dose less frequently after a conversation between the two. Also, he talked at length with our pediatrician to explain his protocol so I know he is more than willing to speak with fellow physicians concerning PANDAS and his enormous knowledge and experience on the topic All you would have to do is drop him a quick e-mail at DrK@webpediatrics.com to get the ball rolling. In our case, our pediatrician e-mailed, he responded within 24 hours and gave her all the information she needed to set up the IVIG. Also, the conversation between Dr. K and Dr. Bouboulis was prompted by Dr. K becasue of all the calls he was getting from parents whose children were getting low dose monthly IVIG to no effect, so I know it is a topic he cares deeply about. Again, nobody on this forum can say for a fact what the absolute correct treatment is. I don't think most things in medicine are that clear cut. With that said, Dr. K has treated 500 plus PANDAS patients, and took a while and lots of research and application developing his protocol. E-mail him or have your doctor do it. Good luck, Alex

Noelle, Don't know about Biaxin, but as far as relationship strrains, of course. PANDAS causes unbelievable stress. Just hearing about your daughter's rage after school made me yell at my wife. Just kidding, but obviously the emotional strain is overwhelming. I think parents of PANDAS kids would benefit more from counseling then the kids themselves. As far as school, we told ours. My son's teacher is great, read 'Saving Sammy' and other PANDAS info and brought up the topic at a staff meeting. He looks out for our son and keeps us posted of any behavioral changes and any strep in class, and gets my son to use the hand sanitizer as often as possible. Back to the Biaxin, good luck. Comparing Dr. Trifiletti to Dr. K, Dr. T seems much slower to go to IVIG where as Dr. K says without IVIG, no PANDAS cure. He says it is necessary to get rid of the autoimmune process causing the problem. I believe Dr T has been tracking some PANDAS case for 10 years or so and I asumme he has seen what he believes are some cures from antibiotics alone. I'd love to hear some examples. Good luck, Alex

I think the most important thing is to get a PANDAS expert onboard in your daughter's treatment. You don't want to waste valuable time by getting nowhere with doctors who know little about PANDAS and have treated few or any. Dr. K has already been mentioned. He is fantastic, and has treated over 500 PANDAS patients. Also, Dr. Trifiletti. Check out his website, www.neurokidsr.us. His forum is on the website, PANDAS Central, where he has a lot of info on PANDAS, and you can post questions, or contact him directly. Also, both are more than willing to consult with your local doctor. Not to sound cheesy but you can go from hopeless to hope filled with the exchange of a couple of e-mails. Good luck, Alex