Ellen

Has your DAN doc ever tried Nystatin for the yeast issues? If not, it might be worth a try. Ellen

Great idea PeggySue! I will contact them too. Ellen

Michael, please keep us posted on how your son does with the increased dose of zith. I just started today with the increase from 250 to 500 mg. for my son and I am hopeful that this will make a big difference. Ellen

Doug, welcome to the forum. My son's OCD has been mostly intrusive thoughts (not so much ritual). In his case the thoughts interfere with focusing and concentration, so it can be very frustrating. Your daughter does sound like classic PANDAS and I agree that she should be on full strength Zithromax or Augmentin. Ellen

Beth, Dr. Trifiletti mentioned that with IVIG they often pretreat with Benedryl and Motrin. Does your immunologist do this? Coco, does Dr. Bouboulis do this? During my last conversation with Dr. B about IVIG he said he would start my son with 750-1000 mg/kg and he is willing to increase the monthly dose if we are not seeing results.However, he does believe that we could still see good results at this dose and we may not have to build up. He does feel that this kind of dose over a long period of time is going to give better results than one intensive high dose. I doubt that Dr. Bouboulis would require high strep titers for a confirmation of PANDAS. My son's have only been slightly elevated.

Thanks for the advice. I now believe that we might have seen a more obvious or dramatic improvement from PEX if he had been on a higher dose of Zith just after he finished the treatment and if we ever do this again, I think it makes sense to have him on full strength antibiotics immediately after PEX rather than building up to it. I feel like I am learning everything just a little too late. But maybe others can benefit from this if they plan to do PEX and want to get the best possible results. I think you are right that he will need IVIG to address the immune deficiencies. I'm really hoping that this in addition to the increase in the zithro will help with the OCD and focusing because those are his biggest problems right now. I will keep Advil in mind too. With Thanksgiving two days away, I have been thinking about how thankful I am for the best thing that happened to me this year, which was finding this forum. Many many thanks to everyone! Ellen

Beth, I am glad to hear that your daughter is doing well with IVIG. What dose is she on now? Dr. Trifiletti does treat with antibiotics (I didn't ask about steroids) and I believe he plans to get set up with a hospital for IVIG/PEX some time soon. Maybe he will give more details when he posts again.

EAMom, Dr. Trifiletti asked the same question about whether we were using Advil. I have not tried it yet because of the sensitive stomach issue. Also, I don't know if I read somewhere about extended use of Advil causing stomach ulcers. I'm not sure about that. Have you read anything about that? I would be open to using it sometimes (maybe not every day) if I can get the irritable stomach issues under control. I'm hoping the increase to 500 mg. of Zithro a day will make a big difference, but I am fairly certain we will have to do IVIG along with it. Do you think it's possible that we will see good results from just increasing the zithro dose? If so, how long does it normally take to see the changes?

After bringing my son to see Dr. Trifiletti, I am very comfortable recommending him to others on this forum. He has a wealth of information about PANDAS, explains the science of it very well, and gave us excelllent suggestions and advice. His bedside manner is great, and my son really liked him too. (Thanks Dr. T!) He has been getting a lot of PANDAS patients, and I am sure he will be seeing many more. He told us that he plans to post on the forum again soon. Just some background info on my son: He is 13 and has been struggling with PANDAS for almost three years. His OCD started with a strep in January of 2007 (before that there was a history of mild tics associated with strep since age 5), and he became much worse after two vaccines (Chicken Pox and Hep A) several months after the strep in 2007. After the vaccines he really went downhill and had major focusing problems, hyperactivity, pacing, insomnia, facial grimacing, chorea movements, new tics, long zoning out episodes that could often last for minutes at a time, low frustration tolerance and inability to do homework or concentrate in school and eventually rages.The first neurologist who saw him thought it could be PANDAS but suggested SSRIs as the treatment and this made things so extreme that there were multiple psychiatric hospitalizations. He is much more stable now, and he did improve a great deal after we started a gfcf diet and supplements with DAN doctors. He also had plasmapheresis in the summer of 2008 with Dr. Elia at CHOP, which seemed to be partially helpful but there were still many remaining OCD and focusing issues. Before we saw Dr. Elia we had looked into IVIG, but got mixed opinions about whether or not it would be safe for my son because he has low IGA and there was concern about the possibility of an anaphylactic reaction. This summer we saw Dr. Latimer, who felt that PEX would be more efficient and effective through a central line (at CHOP it was done through a periperhal line and they had to stop after it was 70 percent complete because of vein problems.) We also saw Dr. Bouboulis, another excellent doctor, who tested my son and found many significant immune deficiencies including low IGG (total and subclass 4), low IGM, a Selective IGA 2 Deficiency, and he failed 12 out of 14 of the strep pneumoniae titers. Dr. Bouboulis told us if we went ahead and did plasmapheresis at Georgetown, we would most likely need to follow up with monthly IVIG and that he could give him a low IGA version of IVIG to avoid the risk of an allergic reaction. So we decided to move forward with PEX and possibly follow up with IVIG with Dr. Bouboulis if we didn't see good enough results. Now we are 7 weeks post PEX and we are seeing only small improvements and in the last couple of weeks, I have been starting to worry that PEX was not effective enough. His general mood is a little better and he is less spacey, but I was hoping to see more by now. When we got back from DC I started to realize from reading the forum that he needed to be on a higher dose of zithro, so I started increasing slowly from 250 mg twice a week to 250 mg a day, which is where we are now. I have had to move slowly with this and increase the probiotics because in the past this dose of zithro has been rough on his stomach. I want to work up to 500 mg a day (he is 95 pounds), and Dr. Bouboulis agrees with this idea. I am hoping that his stomach will be able to handle it and the higher dose may show a more dramatic improvement. Our plan has been to just wait and see how much improvement we get from PEX and the increase in antibioitics before moving forward with IVIG with Dr. Bouboulis. I decided to consult with Dr. Trifiletti to get his views about whether or not we are on the right track. I'm glad I did! Dr. Trifietti really impressed me with his knowledge of PANDAS and had some very good advice. He feels that we are on the right track with increasing the antibiotics and that he does recommend following up with IVIG. He believes that in my son's case, plasmapheresis is not really that helpful because it gets rid of the good antibodies as well as the bad and does not do anything to address the immune deficiencies, which he thinks may very well be the problem underlying the PANDAS. He feels in his case, strep may not be the only trigger and there could be viruses or other things going on (such as non-group A strep) and that these problems can be best addressed through IVIG. He plans to contact Dr. Bouboulis and suggest doing some kind of T cell study to possibly identify what other things might be going on besides strep. (Does anyone have information on what exactly a T cell study is and what they look for?) Also, I asked him about other antibiotics we could try if we don't have enough improvements from a 500 mg day dose of Zithro and he mentioned Clindomycin. (We can't do Augmentin because of a bad hive reaction to Amoxicillin in the past.) Has anyone been on Clindomycin for PANDAS? Any information would be appreciated. I also asked him about the possibility of IV antibioitcs for PANDAS, and he explained that the effects were likely to be just temporary and would not address the immune issues like IVIG. He did try IV antibiotics in one case that he considered to be extreme, and it helped the boy get stable but the effects wore off and the boy didn't get better until he had plasma exchange. One very encouraging piece of news that Dr. Trifilletti told us is that in his experience, kids do get better in time. He has seen many cases over the years, but that they eventually resolve and the kids do get well. I don't believe he has seen a case of PANDAS that did not eventually get better, so this was very uplifting news to hear. Before this appointment, my husband still had some reservations about moving forward with IVIG and now I think he is fully on board. I plan to follow up with Dr. Bouboulis some time soon about the T cell study and probably setting up monthly IVIG some time soon. I also just went through my son's records from 2008 and found that he did test high for the HHV-6 virus (1:80 with the range being <1:10). I am not exactly sure what this means or if it is just indicative of a past infection but plan to speak to Dr. Trifiletti and/or Dr. Bouboulis about it some time soon. I am no longer feeling as down and discouraged because my son has not improved enough from PEX. There are other options for him. Since this appointment I am starting to feel hopeful again. Ellen

For sure. I am curious to hear what he will say about this, and my thinking is if he feels it could be really helpful, maybe we would want to try it even before IVIG. Ellen

I agree with Coco that the IV antibiotics are definitely worth trying. I have been considering IV antibiotics for my son as well because the improvements 7 weeks post PEX are small and not that obvious so far. We have an appointment with Dr. Trifilletti on Saturday, and I had been planning on getting his input on trying IV antibiotics at some point in the future. At one point, we thought my son had lyme and the lyme doc wanted to do IV antibiotics and made a comment about how sometimes oral antibiotics don't get absorbed properly and that the IV can be more direct and effective. We never did try the IV antibiotics because after awhile I was pretty sure it was PANDAS and not lyme, but now I'm thinking about how this might be helpful for either disorder. You mentioned it being the meningitis antibiotic? Do you know which one that is? Ellen

When my son was diagnosed with PANDAS two years ago, the first neurologist we saw told us that the treatment for PANDAS related ADHD and OCD should be the same as any other kind, with stimulants and SSRIs. (No mention of antibiotics except as a possible prophylactic) He did warn us that stimulants could make tics and anxiety worse. Before trying SSRIs for the OCD (which turned out to be a disaster) he was on Vyvanse, a stimulant for ADHD, which we thought might help with his focusing issues and spacing out problems. We stopped after two days because his anxiety went through the roof and he was borderline hallucinating. It was very scary! Ellen

Lauren'sMom, I am so glad that Dr. Cunningham agreed to run the test for you! Also, thanks for sharing this segment. I think you are doing an absolutely amazing job in your search to find help and answers for Lauren and you are helping countless others by spreading the word about PANDAS. Please keep us posted on how things go at your Yale appointment with Dr. Leckman. Ellen Pixie is so awesome!! Maybe you can convince her to be a MD that treats PANDAS kids when she grows up!

Lauren'sMom, I think that looking at the medical records and finding out if and when Lauren tested positive for strep will be very helpful as you try to figure this out. Also, I want to mention that my son's PANDAS started with a a strep when he was in fifth grade and became much worse after he had two vaccines (Chicken Pox and Hep A) in the summer before he started sixth grade. You may want to think back to see if you noticed any changes in the weeks following the vaccines. I am glad that you will have a chance to meet and talk with Dr. Leckman in person. When he met with us for the first time, he gave us three hours of his time and I was very impressed with his concern and genuine interest in our case. I'm glad you will be contacting Dr. Latimer as well because I think she will be helpful too. Also, I agree that if you and Lauren are up to it, I would continue to work with the media to update everyone on your story and spread the word about PANDAS. Best of luck and keep us posted. Ellen

Lauren'sMom, Hello and welcome! It sounds like you have been through a rollercoaster of events over these last few weeks and you must be so overwhelmed. I'm glad you found this forum and that you have been hooked up with doctors who can be really helpful. Dr. Leckman was one of the first to diagnose my son's PANDAS two years ago, and he is an extremely compassionate doctor and can be a great resource for you. You also might consider speaking with Beth Latimer, a pediatric neurologist in Bethesda, MD, who treats kids with PANDAS and has been helpful to many of us on this forum. You have done an amazing job of seeking out help and calling attention to your daughter's story and I believe you are on the right path to getting her well. Ellen

DC Mom, I have not had my PANDAS son officially tested for an Amoxicillin allergy, but I think for him it is the antibiotic that he reacted to because my husband and my non-PANDAS son have also had hives or rashes while on this drug. It is still possible that it might have been the strep itself and not the antibiotic that caused his hives, so I should probably look into it with an allergist at some point. Maybe I'll do this if we don't get good enough results from increasing the Zithro. If he does turn out to test negative for Amoxicillin, maybe I would consider starting it in very small doses to see how he reacts. This is an excellent suggestion. Thanks. Ellen

Alex, I will be very interested in hearing about how your son does with the increased dose of Zithromax. Our situations have some similarities. At 6 weeks post PEX, I am seeing only small improvements with my son, who is 13 and has had PANDAS for almost three years. I wish we could try Augmentin, but I am sure my son is allergic to Amoxicillin because of an outbreak of hives that occurred all over his body while he was on it for a strep five years ago. If he were to test negative for the allergy now, I would still be reluctant to try it. Also, before PEX he was only on 250 mg. of Zithromax twice a week because in the past his stomach has not been able to tolerate higher doses. This does not leave us with many options for antibiotics. Because of all the people on the forum who are suggesting higher doses of antibiotics post PEX, I decided to try to gradually increase the Zithro while increasing his probiotics at the same time to help with the stomach issues. About a week post PEX I asked Dr. Latimer about increasing the Zithro to three days a week at 250 mg. and she thought that was fine. Then, we saw some improvements with my son's zoning out problems, so after a couple more weeks, I persuaded our immunologist to increase it to 250 mg every other day. I am not sure if this is helping yet, but he is having a little stomach trouble and if I increase more, I have to go slowly and figure out what to do about his stomach issues. We are considering monthly IVIG with the immunologist (he does have a lot of immune deficiencies), but I want to wait and see how how much he improves first from the PEX and the increases in the Zithro. Our immunologist agrees with the idea of waiting. Please keep us posted on how your son does with his new daily dose. Ellen

Falling Apart, so sorry to hear that your girls the flu. This may explain why you were seeing a worsening your PANDAS daughter's symptoms post PEX. My son had some kind of virus with vomiting and fever four weeks post PEX but he got over it in one day and I don't think it was the flu. You may want to try children's oscillococcinum, which is a homeopathic flu remedy okay for children age 2 and up. I have stocked up on both the children and adult versions but never had to use it for anyone in our family so I don't know how well it works. I would definitely talk to the ped about what else you can do. Ellen

Falling apart, sorry to hear that things have gotten worse post PEX, and I hope you can hang in there and stay hopeful. It is interesting that you say that your daughter's drawing abilities returned and improved. This is a very good sign that something is working. I think that different parts of the brain may heal at different rates. My son is now 6 weeks post PEX and I have seen small improvements in some areas (like in general mood and responsiveness to questions and directions) and I am still waiting and hoping for some improvements in other areas such as his ability to read, to think clearly and to focus on homework. I still want and hope to see more and am trying to remain upbeat about the things that are looking better. I have to confess that I had this fantasy of seeing this dramatic overnight change where my son would suddenly morph into his pre-PANDAS self from three years ago and like some magic wand, PEX would just make all the remaining PANDAS symptoms magically go away. But this has not been the case for our son, who is older (13), has been dealing with PANDAS for a long time now (almost three years) and has had a complicated case that began as strep but was worsened with vaccines. Your daughter is very young. That can be a plus. The brain does take a long time to heal, and this is what I keep telling myself as I wait and watch for more positive changes in my son. Ellen

HelpNate, my son has had PANDAS for almost three years and his primary and most debilitating symptom is that he is spacey. In his case, it is intrusive OCD thoughts that cause him to be this way. Ellen

Lovingmj, I also agree with what the others say about testing for strep. New Jersey is a convenient location for seeing PANDAS docs. Dr. Trifiletti opened up a practice in Ramsey, N.J. in September of this year. The information is on his website. Also, we are one of the families that has seen Dr. Bouboulis recently (he has offices in Stamford, and Darien, Connecticut), and I have been very happy with him. Please keep us posted. Ellen

Thanks for sharing this information, Dawn. I was speaking to a vision therapist recently, and she is familiar with PANDAS and says that it is not uncommon for kids with PANDAS to have vision difficulties requiring vision therapy. Most commonly it is difficulty with the two eyes working together. I have always attributed my son's reading difficulties to his intrusive thoughts, but I am thinking of having him evaluated by this optometrist to see if this problem is also contributing. She was not able to explain why kids with PANDAS seem to have this problem, only that she has seen it more frequently with these kids. Ellen

DeAnn, I am sorry for the ordeal you have been through with your son. Maybe since his is a very bright kid, it will help if you explain the science of IVIG in a way that shows how it will help get rid of the bad antibodies that are causing his intrusive thoughts and making it difficult for him to fully use his gifts. My son is 13 and there are many similarities to your story. He was a very bright and high achieving kid, a gifted writer and artist who had won awards and all that, until he came down with a strep at age 10 and had "curse words" and other intrusive thoughts stuck in his head. He was responding well to therapy but things became severely worse after he had vaccines seven months after the initial strep. After that the OCD got much worse and there were other symptoms including spacing out episodes, hyperactivity, sleep problems, pale, dark circles, pacing, inability to do homework, loss of all interests, impulsive and irrational behavior etc.. I could go on and on. He also missed almost his entire year of sixth grade due to multiple hospitalizations, and thankfully he is now much more stable and we have seen many great improvements, but I get how hard it is to watch a very bright high functioning kid go downhill in such a quick and dramatic way. We have done diet changes, the DAN protocol, neurofeedback, two rounds of PEX (second one just a month ago) and we are considering monthly IVIG. He is happy to have many of his gifts back but still struggles with homework and reading. He is so sick of doctors and treatments, but at the same time gets that it is helping him. It is not easy. It may help if you explain the benefit of the treatments in some kind of visual and concrete way so he can better understand how it will help. This is what I have done for my son whenever he does resist a new treatment and this seems help him get it. Ellen

My son was on Klonipin for a short period of time after we had given up on SSRIs because they were worsening his symptoms in a huge way. Klonopin was not helpful for him. He did not really have much improvement with any psychiatric drugs. Have your considered neurofeedback? (For my son it has helped with anxiety.) Also, have you thought of trying a high Saving Sammy dose of Augmentin? If my son were not allergic to it, I would be itching to try it since others have had so much success with it. Ellen

Dr. Fallon was a big help to us when were trying to figure out whether our son had lyme or PANDAS or both. Before seeing him we had seen a Lyme Literate MD who felt that he had lyme and probably not PANDAS, but the test results for lyme were equivocal and the lyme treatments were not working, and all of the other doctors we had seen including Dr. Leckman felt it was much more likely to be PANDAS than lyme. Leckman suggested seeing Dr. Fallon, whom he respects very much, to get his opinion. Dr. Fallon did some blood work including a C6 Elisa, which he considers to be a pretty good lyme test, and that turned out to be negative for lyme. Based on my son's clinical history and slightly elevated ASO, he concluded that it was much more likely to be PANDAS than lyme. I agree that Fallon is a very nice doctor, and he would be a good person to consult. After seeing him, I was relieved that we could finally put the lyme theory to rest and treat this as PANDAS. Ellen