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Everything posted by Alex

  1. My son's ASO titer and ANti-Dnase B are also still elevated after two years on antibiotics. In searching around the web I found a study called 'Effect of tonsillectomy on ASO-titre'. Here is the link to the abstract- http://www.springerlink.com/content/h379182709163650/. I had to purchase the study in order to read it. The gist is that they took 50 kids with elevated ASO titre and a history of sore throats and performed tonsillectomies. After one year, 88% no longer had elevated ASO's. Also, the incidence of strep throat was also way down. Of course if someone gets a tonsillectomy and then is still constantly exposed to strep from some other source, like a family member who is a carrier or has repeat strep throat themselves then it sure seems that the ASO would stay up.
  2. Well said Eileen, We are most likely going to have my son's tonsils taken out after two years of fighting PANDAS. I was going to call to make the appointment today but put it off for one more day. My son still has elevated strep titers two years after a case of untreated strep throat started his PANDAS. We realize that it won't necessarily cure him of PANDAS, but if the tonsils do harbor strep that his immune system is fighting but can't clear, then I don't think he is ever going to get over this. Just like if a child has PANDAS and is constantly getting re-exposed to strep from a carrier who is a family member. If strep caused the PANDAS and you can't get away from the strep, it seems pretty likely that that is a bad thing. I was told secondhand that Dr. Cunningham is a supporter of T & A removal for PANDAS. Has anybody on here asked her that question directly? Dr. K doesn't support it, but on one of the several case studies he has on his website, one of the children who responded so well to IVIG had previously had T & A removal. Maybe the IVIG wouldn't have worked so well if they hadn't.
  3. Hi Laura, Great explanation! Thanks so much. We also are still looking for that damned needle in the haystack. How is your son doing?
  4. Hi eljomom, Great questions. I don't know. I see what you are saying. If the immune system thinks it is finding step when it is really finding brain tissue that it thinks is strep, how do you break the cycle. One thing I think makes sense though, if you actually have an active infection of strep or lyme or whatever, or you are constantly getting reinfected, there is no way you are going to get rid of PANDAS. In my son's case, he had a really bad strep infection to kick off PANDAS, and it wasn't treated at all until 6 weeks after the active infection wound down and he had full blown PANDAS. Since then he has been on continuous antibiotics and still we can't get his ASO titer to come down to the normal range. Is it because the strep is in his tonsils or somewhere that the antibiotics can't get it, or is it just the autoimmune cycle that we haven't been able to halt? At this point for us, I think we can't rule out the tonsils, especially since for some of these kids, removing them works. I think the Psychiatrist who wrote the articles is too confident in his belief that there is an easy answer to PANDAS, but on the other hand, it sounds like he has had some successes, even with adults. For us it is just a matter of leaving no stone unturned. Hi old PANDAS friends! Wish I was on here under better circumstances.
  5. Hi eljomom, I just reread both the papers Dr. Cunningham sends out with the results of the labs. Definitely very challenging reads. Here are the links. http://intramural.nimh.nih.gov/pdn/pubs/pub-15.pdf http://intramural.nimh.nih.gov/pdn/pubs/pub-19.pdf I could literally look up every third word for a definition. I did look up a lot though. The gist of the papers, as I understand it, is that GABHS, strep throat, has proteins on it's surface that are similar to proteins in the human body, in the heart, joints, brain, etc. The immune response to the infection produces antibodies which identify the strep throat bacteria by those proteins, but get confused by the similar proteins in the heart, joints, and brain and attach to those tissues as well, or instead. In Rheumatic Fever, this immune mistake results in the destruction of heart tissue or joint tissue. In Sydenham’s chorea and PANDAS, the result is non destructive, but the antibodies attach to brain tissue and cause excess production of a brain protein call Cam Kinase II. Cam Kinase II plays an important role in brain signaling and excess amounts of it screw up the signaling which, as the hypothesis, or theory or whatever goes, causes Sydenham's chorea and PANDAS. So, in a nutshell antibodies to strep get confused, attack the brain, cause excess Cam Kinase II which negatively impacts brain signaling causing the movement and behavior disorders of Sydenham's chorea and PANDAS. So the papers are specifically talking about antibodies to strep throat, and it is not the infection that directly causes the brain problems, it is the antibodies the immune system produces to get the infection. That's why the results from a plasma exchange can be so dramatic. The plasma contains the antibodies, if you exchange it for new plasma, you get rid of all the antibodies, including the bad ones. I'm sure the above will be painful for Buster to read, if he does. My son had Plasma Exchange and multiple high dose IVIG's and over two straight years of antibiotics, and unfortunately is still struggling. When he went in for Plasma Exchange, his ASO titer, another strep antibody, was 200. When he came out it was at 20(they don't completely exchange the plasma, just most of it). A few weeks later, I hate to say, when he relapsed, his ASO titer was back up to 200, where it has stayed for the last two years. We can't get the Cunningham test now, but if the ASO titer won't go down, I am starting to realize that we don't have any reason to think that those other bad antibodies to strep will go down either. And if they won't come down, why not? The psychiatrist in the articles, and the ENT's he has trained would say it is because we have an ongoing battle with some sort of strep infection. In fact that is exactly what the psychiatrist said when he corresponded with us. Our local ENT says the same thing. That's why I found those articles interesting and they are one of the reasons that in our particular case, we might give the tonsillectomy route a try even though I realize it doesn't work all the time or maybe even most of the time. We've got to do something.
  6. Hi all, I found these two articles on the 'Psychology Today' website by a psychiatrist out of California who treats PANDAS with tonsil/ adenoidectomy. http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment My son still has a borderline high ASO titer now (200, with the lab in question considering >150 as elevated) after over two years on antibiotics. We did the Cunningham labs twice. Last time, a year ago his anti-neuronal antibodies had all come down to borderline high but his Cam Kinase II was still high at 167. Dr. Cunningham commented in her notes that to her those antibody levels were still high and still causing the elevated Cam Kinase. Since we can't get the Cunningham labs anymore, we are wondering if the ASO, which hasn't budged down at all in about two years indicates that his anti-neuronal antibodies are also still borderline high, since, if I understand it correctly, they are all antibodies to GABHS. At this point we are exploring removing my son's tonsils and adenoids in case they are a source of ongoing infection. We corresponded with the psychiatrist and he believes that for the ASO to remain elevated, there must be a source of ongoing infection. Our local ENT agrees, so we may be headed down the T&A removal route, even though I know it is controversial. Alex
  7. I definitely am not trying to stay away from the forum. This forum has been a life saver for us and I will be forever grateful (even though it is a bummer when people start sniping at each other) It's just that I don't have too many questions I want to ask right now, and all that I would have been able to post as news would have been bad. The reason I posted the other day was because finally we are feeling like we had something positive to say. Things were looking up. As far as the teeth and Celiac, I don't know that much about it to be honest. Only that with Celiac you don't absorb nutrients from your food that well because your intestines are damaged by the autoimmune attack. So you have poor teeth enamel (along with other deficiencies) and are prone to tooth decay. My son had a ton of decay in his baby teeth (even though I think we were doing a pretty good job of taking care of them) and along with other symptoms, we finally clued in that it is a possibility for him. Since stopping the gluten, he hasn't had a single bout of constipation or diarrhea. Once I started the dangerous process of Googling Celiac, I started to see all the stuff about behavioral problems associated it. My son may not have it, maybe even probably doesn't have it, but certainly we had enough signs that it was something worth looking into. Our philosophy so far on the PANDAS stuff is that if my son isn't making progress, then we are missing something. Even if it turns out that there was no Celiac( or tick borne illness), we are very far from throwing in the towel. We will just need to keep searching until we figure out what it is that is keeping his immune system on alert. Hope this is a better link- http://psy.psychiatryonline.org/cgi/content/full/50/3/300 Here is another interesting one- http://healthy-family.org/caryn/289/scientists-have-discovered-that-celiac-disease-can-be-the-root-cause-of-most-neurological-disorders My son had a great day today.
  8. I haven't been posting at all because things were not going well. My son would have a brief good stretch and then relapse. I am hopeful that we are finally getting to a point where we are making some lasting headway, but it is still too soon to be sure. My son had PEX and has had five high dose IVIG's with the best response coming after PEX and the first IVIG. Subsequent IVIG's have had a positive effect but nothing long lasting or dramatic. But for each of those IVIG's that didn't seem to do much, we had a fairly significant immune challenge fairly soon after that may have been the reason, tooth infection, ear infection, multiple bad colds, gastro-intestinal illness. The tooth issues have been big for my son. After PEX, he had a tooth infection that was devastating. Like others I have seen on the forum, he seems to have a significant uptick in symptoms even with a loose tooth. He has three baby teeth left and I can't wait until they are out. I had a thought the other day that the supposed growing out of PANDAS at puberty may be related to the fact that around puberty is also when all the adult teeth have grown in. I have heard so much lately about poor dental health resulting in inflammatory/immune processes taking place in the body, such as heart disease, related to the bacteria from the mouth that enter the blood stream when people with gum disease chew or brush teeth. Maybe the same thing is happening with the loose teeth. The breach of the gum allows all that mouth bacteria an avenue into the body which requires an immune response, and voila', psychotic child. Just a thought. Anyway, we finally broke down and saw an llmd when nothing else seemed to be working. He didn't see any real evidence of tick born disease in the test results but said that doesn't necessarily mean anything, and that regardless, my son's issues certainly seemed to him similar to what were infection induced problems in others and thought it was worth it to try a multi antibiotic approach for a while. I would say we have definitely seen positive results, although he is not symptom free, he is happier, has much more mental clarity and is more vigorously health. We'll see where it goes. We also recently took him off of gluten due to ongoing bouts of constipation followed by diarrhea and low appetite in addition to poor teeth quality which is a Celiac symptom. The stomach problems are certainly much better, and Celiac is associated with mood and behavior disorders and even OCD. Here is a link. http://psy.psychiatryonline.org/cgi/content/full/50/3/300. We are going to eventually get the testing for Celic, but that requires going back on gluten, and right now we don’t want to rock the boat. I wish we had better news but he has really had a good stretch these last few weeks and we have some optimism again. I'm still convinced that worst case he can live a good life with at most a low level of symptoms that need to be managed. Hopefully better than that. I still read the forum on occasion and still hope someday to get on here and tell of our success. Alex
  9. I would be worried that the fluid in the ear was a breeding ground for bacteria, maybe a low grade infection. My son had fluid trapped in an ear a few years ago and it took months to clear. The pediatrican said not to worry about it because it didn't look infected. We didn't know about PANDAS at the time but when we looked backed we realized he had an exacerbation during that time.
  10. Hi, My son had Plasma Exchange in August 09. We saw great results but they didn't last long for us, with a relapse coinciding with a bad tooth infection. At the time, his doctor only prescribed a very low dose antibiotic for the strep prophylaxis following the procedure. In hindsight, we wish we'd had his teeth checked prior to the PEX and also would have absolutely used full strength antibiotcs leading up to, during, and for a considerable length of time following PEX. I think that particular doctor now prescribes full strength antibiotics after PEX but not 100% sure. Probably the same doc since few, if any, others do PEX for PANDAS. So, my advice, for what it's worth: 1. Prior to PEX, do as much as you can to insure your child does not have any ongoing infections such as sinus, tooth, mycoplasma, lyme, strep in tonsils/adenoids. 2. Check to see if other family members are strep carriers and treat if they are. 3. Full strength antibiotics going into the procedure and for an extended time following. 4. Respond to any relapse after PEX quickly and agressively by determing what the cause of the relapse is, increasing or changing the antibiotic and using prednisone to knock down the immune response. 4. The worst part of the actual procedure for my son was when the adhesive tape holding the catheter in place was removed once all three rounds of plasma exchange were complete. The physician who removed the tape thought my son was over reacting, but other parents posted the exact same thing, that the tape removal was the worst part. Supposedly they have a cream or something that loosens the adhesive before they remove the tape. Make sure they use it and consider sedation prior to the tape removal. I know it sounds crazy that that was the worst part, but it was. Good luck, Alex
  11. MomWithOCDSon is another one whose child has a signifcant reduction in PANDAS symptoms on AugmentinXR but not on regular Augmentin. She posted about it a few weeks ago. It's been a while since I read 'Saving Sammy' but as I recall it was the same thing, Augmentin XR was the key. Even the almost as high dose of two 875mg regular Augmentin didn't cut it. Love her or not, Beth Maloney kept highly detailed records of her son's recovery. Every time she tried reducing the dose for a year or so, PANDAS sympoms resurfaced. So the big question is what is it about the XR that the regular Augmentin doesn't have? It can't be the clavulanic acid becase at the dose these kids are getting they receive half as much clav as they do from regular Augmentin. Is it the extra amoxicillin? Personally I dobut it becasue the difference from two 875mg Augmentin to two XR is only 250 mg of amoxicllin over the course of day. I doubt that is enough to make such a drastic difference for these kids between the two. What does that leave? Just the extended release aspect. And the extended release portion is all amoxicillin. The part with the clav acid is immediate release. My son had a second IVIG about 7 weeks ago. He was doing great until about the three week point when things started going down hill. We kept him on azith for a few more weeks without getting back any of the initial progress. I convinced our pediatrician to mix up the antibiotcs for a week or so before we went to see Dr. B for a followup and to see what is going on. The antibioitc I got her to prescribe is called Moxatag. It is a time release Amoxicillin with a very good blood plasma concentration profile. It stays in the blood at pretty high level for 12 hours. My son is taking two a day spaced 12 hours plus one 250 mg augmentin. My reasoning for asking to try this was that if the time release aspect is the key, the moxatag is great for this(better then the XR if I'm reading the info right). The small augmentin is thrown in to keep the clav acid in the mix. The two moxatags plus the one augmentin is giving him the same clav acid and a little less amoxicillin then two XR would give. It's been 6 days. He's improved some but nothing drastic. I'll keep you posted but we have pretty much decided that some ongoing tooth issues are what caused the setback and until those are fixed I don't think anything is going to work. Here is the link to the prescribing info on moxatag. http://www.moxatag.com/Portals/0/docs/Moxatag_PI.pdf The second page shows the graph of blood plasma levels if anyone is interested (Buster)
  12. For anyone that attended Dr. K's lecture, did he mention any long term following of his patients? I asked him that question over a year ago when we first had a phone consult and although I can't remeber exactly, got the impression that he didn't really do any long term follow up. How tough would it be to have a medical student under his instruction contact some of the PANDAS patients he's had through the years and see how they are doing, how much they've recovered, how long it took, what were the bumps in the road? Seems to me it would be absolutely invaluable information in terms of knowing how well IVIG actually works. I still tend to believe that for the most part IVIG does work as Dr. K believes because the few long term stories I've heard, either on here (ChicagoPandas or something like that) or from Diana Pohlman (she has run into or spoken with a few PANDAS patients from 10 years ago or so who had IVIG ) are that they are doing great, fully recovered and leading life to their full potential, but that the recovery was bumpy and took a few years. Maybe someone will post tomorrow that they had IVIG five years ago and are still a mess and I'll change my mind and lose a little hope.
  13. Personally I'd say much more likely then not your son has PANDAS. You have a direct tie in with strep leading to OCD and possibly tourettes, along with mood lability/agression. Many kids also have physical symptoms. My son has very low energy when his PANDAS is in full swing. He also looks bad with dark circles under his eyes and pale skin. Read some of the info in the pinned section including the FAQ and the flow chart. Contact one of the big PANDAS docs such as Dr. Kavocevic or Dr. Bouboulis and set up an appointment or a phone consultation. If you can get your pediatrician to accept the possibility of PANDAS, try an extended course of a robust dose of antibioitcs. Azithromycin or Agumentin are the two that seem to most commonly bring some relief. We had better success with Augmentin but most seem to have the best resuts with the Azithromycin. Many do 500mg a day of azith for a while. Did the blood work include strep titers ASO and anti-dnaseB? These don't need to be elevated for it to be PANDAS but if they are elevated then you might have further evidence you are on the right track with PANDAS. At a minimum, PANDAS is something to rule out. Many parents print sections from the previously mentioned info pinned at the top section of the forum to give to their local docs to get them to at least get the open to the possbility of PANDAS and then turn them into converts when they see postive results from treatement. Good luck and sorry you are on here. Alex
  14. Dr K told me in an email "875 augmentin is more effecive in pandas than 1000 xr " Any thoughts on this? I had always thought, the 1000xr was to be the best- never tried it, but just heard it got better results?? I do know we are on 875 twice a day and when we added the zithro 250 zpack for 5 days, we had a lot of behaviors disappear and within 36 hrs of being off he dipped down again and is still stuck there. I'm pretty sure that Dr K. does not veiw antibiotics as a treatment for PANDAS symptoms. I could be wrong, but I think the reason he prefers the 875 augmentin( or the 500mg or the 250mg) over the Augmentin XR at 1000mg per pill is becasue the 875 , and the other smaller doses, have twice the clavulinic acid, making it better at preventing strep reinfections. I mentioned the Saving Sammy dose to him as a PANDAS treatment and I don't think he buys it. He doesn't treat PANDAS with antibiotics, he treats PANDAS with IVIG and then prescribes antibiotics to prevent strep. Just from being on this forum though, and reading Saving Sammy, it sure seems like there is no doubt that the right kind and dose of antibioitcs can greatly reduce PANDAS symptoms for some kids. Dr. Trifiletti is much more in the antibiotics as treatment camp. With Sammy, for a year or so, if they dropped the dose of Augmentin, his symptoms flared. I personally think that for those that get better results from the Augmentin XR over regular Augmentin that it is the time release aspect that makes the difference for whatever reason. The difference in Amoxicillin from one to the other isn't that great, and you actually get more clavulinic acid from the smaller dose pills, and the clavulinic acid is what makes the amoxicillin effective against certain types of bacteria. So what does that leave, just the time release aspect. I know that Dr. K is of the opinion that Sammy still has PANDAS, and that his patients, after however long the recovery process is from IVIG, don't have PANDAS. I have no idea if he is right or wrong. I am pretty sure though that that is what he believes.
  15. Robin, 151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it. Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point. Good luck, Alex What exactly should I look for with steroid. My son didn't talk much in exacerbation. Now hat he is on the steroid he is hyper and asks a million questions. This would be positive, right? OCD is better and his emotional outbursts are not as violent. I think all you are looking for is some degree of positive response, large or small. Prednisone suppresses the immune system. If the symptoms your child has improve when their immune system is suppressed, it says the symptoms are autoimmune in nature, confirming the PANDAS diagnosis.
  16. Robin, 151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it. Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point. Good luck, Alex
  17. Yes, got back a few days ago. My reserve duty was in Europe. The most dangerous part was when someone hit a wild shot on the golf course and forgot to yell 'fore'. But thanks for the thoughts. My sincere thanks to those in harms way on our behalf. My son is about 5 weeks post a second IVIG. Things are good but not great. I haven't been posting much because we weren't in a position to say IVIG was a phenomenal success but we also couldn't say it was anything close to a failure. IVIG took my son from a crisis to a fairly good place. Maybe over time we will see ( as at least a few others on here have seen) that the improvements continue over a year or more. He was doing really well after the first IVIG until an ear infection set him back significantly( similar to when he was doing great after PEX before a tooth infection caused a comple relapse). We are fortunate that our insurance covers IVIG for PANDAS so we decided to proceed with a second round when he seemed to not be rebounding from the setback. Dr. K wanted us to wait a little longer but I was leaving for close to a month and my son was really struggling and as a result my wife would have struggled tremendously in my absence. The positive results from the second IVIG were evident within a week. Our experience is that since the initial GABHS episode triggering the PANDAS, any infection causes major flares for my son. Hopefully we can keep him infection free and continue to see progress. Again, thanks for the thoughts and prayers. I'm more than a little embarrassed that some may have pictured me leading patrols in the Afghan/ Pakistan border region.
  18. Our local newspapter, the Portland Press Herald, featured an article on Sammy and Beth Maloney and PANDAS on the front page the other day. I thought it was a well written article and I can't fault the reporter for accurately portraying the current state of belief in the medical community on PANDAS. I made an attempt at a letter to the editor which is posted below. The responses are limited to 300 words which was about half the size of my orignal draft. Hope it doesn't stink too bad and I'll let you know if it makes it into the paper. The link to the article is below and please send your own responses if you are so inclined. Alex http://www.pressherald.com/news/a-mothers-...archterm=pandas Response to June 1 ariticle “OCD caused by Strep?” My son developed Pediatric Autoimmune Disorders Associated with Streptococcus, or PANDAS after an untreated strep infection. I take exception with the opinion of Dr. Stephen Rioux of Maine Medical Center who remains unconvinced of its existence. I’m curious to know Dr. Rioux’s views on the 14 studies on the National Institute of Mental Health website supporting the case for PANDAS, including case histories, identification of specific antibodies and their effect on brain tissue, similarity to the other post- streptococcal diseases Rheumatic Fever and Sydenham’s Chorea, and an animal model. Dr. Swedo, the senior researcher from the National Institute of Mental Health quoted in the article, believes that the time for controversy about the existence of PANDAS should be long over. Due to the doubt physicians like Dr. Rioux foster, many parents find it nearly impossible to find treatment. In one of many such stories from our support network, a mother, in desperation when her child developed psychotic behaviors several days into a sore throat and fever, drove to a local children’s hospital. Once there, the staff denied treatment, including antibiotics for an obvious strep infection because ‘PANDAS does not exist’. In waiting for a large scale double blind study, Dr. Rioux sets an unattainable standard of proof, because PANDAS stems from untreated strep, something that would be unethical and unsafe to allow in a medical study. We were fortunate in that our son’s pediatrician was open to PANDAS and through her we found doctors willing to treat with antibiotics and immune modulating therapies. These doctors stumbled into treating PANDAS when the children of close friends or relatives developed the disorder. Their open minds to strong if not overwhelming scientific evidence allowed them to witness incredible recoveries. Maybe all the convincing Dr. Rioux would need would be to treat some PANDAS patients.
  19. My son was 10 weeks post IVIG and we were happy with his progress and considered him on track for recovery when he somehow got a double ear infection while taking a decent size dose of Augmentin everyday. The day after he got the infection his OCD and anxitey flared bigtime. We wrote Dr. K to ask his advice but he was out of the country. When he finally got back to us he recommended that the ear infection be treated with at least 14 Days of Zithromax . The bold was what he used in his e-mail. Unfortunately we had done only a standard 5 day course of zith and it had ended a week prior to when we finally heard back from Dr. K.. My son is still not back to where he was before the ear infection so we probably have another IVIG in our future( insurance permitting). Absolutely it should be a goal post IVIG to do everything you can to keep your child illness free. If they do get ill and it is an infection, from our own experience, and what Dr. K recommended, treat the infection agressiviely and for longer then what is normally done. Maybe if we had done the 14 days of zith immediately we would have been able to put a halt to the big immune response that occured. I haven't posted in a while because I didn't want to post bad news and kept hoping we could get him back on track, but it is not happening.
  20. So glad you are not leaving. It is critical that we get reminded of success stories around here. Also, you remind us all that for most the recovery is extended and bumpy. Thanks for all you have done for the PANDAS cause. Alex
  21. [ I am very happy for you...i want all the good news to keep coming... I do have a question though....do you think it is a 2 step process...now that you've had ivig..??? i noticed you did pex about 2 months ago had success and then relapse....so maybe we need to count the pex as dose 1 or 1 treatment and ivig as the second dose or 2nd treatment...and maybe realisticlyl not set ourselves up for hopelessness and go in realizng we probably need 2 to make it stick... not my origianl idea, i think i it was laurenjmom.and/or sfmom....but it seems more and more to be a common protocal for success what do you think alex??? That's a good question. I can't be absolutely sure, but for us the PEX seemed to fail completely. My son had a bad tooth infection emerge shortly after PEX and was pretty much back to his worst with PANDAS. That was last August into September. In the following months we tried different antibioitics and more prednisone but didn't get far. We did a low dose IVIG in January with some postive results lasting just a few weeks. We did the higher dose IVIG in mid Febuary. Personally I think the high dose IVIG is what is working, but I can't say for sure that the PEX or the lower dose IVIG didn't lay the groundwork. Dr. K however is pretty adamant that the PEX did nothing in our case. My guess is that if he hadn't had the tooth infection the PEX would have had some longer lasting positive results but that we were bound to have a relapse considering how easily he was reacting to any immune challenges. As we can all relate though, I feel no sense of relief at this point. He could come home this afternoon from school a complete mess and we could be back at square one. At a minimum, we are not in crisis right now and have actually had a semi normal family at times recently. Both Dr. B and Dr. K feel that we are on the road to recovery. Here's hoping they are right.
  22. My son is 10 weeks post IVIG and I took him to see Dr. B yesterday. We had a great visit and Dr. B was encouraged about my son's progress. He said the fact that the improvements continued during the second month after the IVIG was a good sign that we had accomplished what we needed to on the autoimmune side of PANDAS and that he expects further improvement and possibly no more IVIG. I can't say enough about how much I appreciate his approach to learning about and treating PANDAS. Not a frivolous bone in his body as far as I can tell. There was a mom with a boy of about 11 or 12 leaving as we were heading in. We gave eachother that knowing PANDAS look but didn't introduce ourselves. Sorry about that and if you are new to Dr. B, you are in good hands. Alex
  23. How about adding this paper to the research section of the pinned information. I would have liked to have had this when trying to explain to our pediatrician how IVIG might work for PANDAS. Alex
  24. I am pretty sure that Dr. K has said that he believes that all OCD is PANDAS/PITANDS inititated. Not sure where this belief comes from. Maybe every OCD case he has seen he has been able to trace back to an infectious precursor. It would be interesting to ask him and see what his reasoning is. Also, I've seen Dr. Trifilleti say that he believes PANDAS/PITANDS is more common then Autism.
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