Kayanne

I think there are a lot! It's just my gut feeling. I think my other 3 kids have all had some symptoms from infections...but it's just never enough (and long enough) to jump into "treatment". I think the vitamins, l-tryptophan and especially fish oil really help keep things in check....and of course Motrin. Prior to knowing about PANDAS, I would have just considered these types of symptoms that my kids have as "phases" -- normal childhood things -- or that genetic propensity to anxiety.

It's azith. It's on Dr. MDK's website, click the link, and it's the third column, third one down. http://www.drmdk.com/Pandas/Index_PANDAS.html

Yes, definitely I'll send prayers and good wishes...Best of Luck ((hugs))

Wow...just wow. I didn't see Lori's youtube channel. I just grow more and more disgusted by all of this.

Most of my family had several strep infections in 2009. My PANDAS daughter's strep was cleared with an adult dose of 10 days of Clindamycin. My other children were cleared by Duricef (a cephalasporin) combined with Rifampin and Amox (penicillin) combined with Rifampin. I was cleared with 2 z packs (azith). I think a lot on the forum have also had success with Augmentin. Here is some good information to know: http://www.pediatricnews.com/views/id-consult/blog/amoxicillin-failure-in-strep-throat/bedfe23ae7.html http://www.urmc.rochester.edu/news/story/index.cfm?id=981 Good Luck

I'm annoyed at Dr. Drew because he seems to think the Dent Neurologists should lead the treatment. I'm REALLY annoyed at Dr. Siegel for not having a basic understanding of how tics work...when someone suffering from tics is reminded that they tic...THEY START TO TIC!!! So a girl walking into a store, and seeing someone else tic would bring on a round of tics for her. Dr. Siegel needs to read "Against Medical Advice"

Dr. Drew on Fox and Friends: http://www.foxnews.com/on-air/fox-friends/index.html#/v/1438616965001/after-the-show-show-dr-drew/?playlist_id=163195 Dr. Siegle: http://video.foxnews.com/?playlist_id=86897 Both of these are a little disappointing....sigh

This is just getting bad: "Another conversion disorder patient reported in Le Roy" http://thebatavian.com/howard-owens/another-conversion-disorder-patient-reported-le-roy/30348 "Mechtler recommended that any parents who are concerned their children could be susceptible to conversion disorder, "take away the social media and segregate them from friends who may be afflicted." Is it possible that the author of these articles, Howard Owens, is just making this up? Is Dr. Mechtler really on this guy's speed dial?

I'm so glad to hear your Son is improving Is your Son primarily suffering from OCD or does he also tic?

We're still doing daily 1/2 dose of Ominicef (150mg). She's had some direct exposure with a teacher in school in the beginning of the year, and we didn't see any significant symptoms. I'll keep her on it for as long as Dr. L thinks it's needed and as long as I don't see any yeast issues. Although, I am considering giving her a break for about a month in the summer after her day-camp ends but I wanted to discuss that with Dr. L when we see her next.

I don't. But do wonder if someone on this distribution might. Here's how I see the paper: it is a minority position paper -- the 5 named neurologists apparently agreed with the NIH conference about the creation of a broader category, but disagreed with the criteria of the conference. the paper does not fit the critiera for publication -- It is neither a report of "latest advancements" nor a presentation of "logical conclusions and recommendations" (see www.jpeds.com/authorinfo) the paper has factual inaccuracies -- (such as the statement that GABHS carriers can have protractedly elevated titers). the paper misrepresents findings of other papers -- it cites other articles as supporting positions when those citations hold contrary positions to the statement being made. This is either poor research or knowing misrepresentation. the paper is exceedingly self-citing -- the bibliography has over 50% of the papers being by the same author the paper fails to present evidence counter to their position -- The paper is missing papers and evidence contrary to the authors position such as Kirvan's Nature paper or the great work by Hornig. the authors make dangerous treatment recommendations in a field in which they are not experts. -- The authors state that "recommended treatments for OCD are selective serotonin reuptake inhibitors". This is a treatment, but not the recommended treatment -- especially for pre-pubescent children. ERP and CBT is the recommended therapy with SSRIs being used under extremely close monitoring due to black-label risk of suicide. Multiple reports (including the work by Murphy and Storch) cite extreme sensitivity in kids meeting PANDAS criteria to anti-dopaminergic drugs. I could go on and on. I hate bad science and worse these pseudo science papers that set things back because they move from a focus on etiology and pathogenesis to creating categories of symptoms as if that is meaningful. Great so we know there are kids with acute OCD and Tics -- the point is whether we can treat the condition, not whether we can name it. Grrr... Wow!!! Again, Thank you So, I've done a bit of googling. I'm thinking the best we could hope for would be a withdrawal of the article. Retraction seems to be kind of rare and has a stigma attached to it. Although, to misrepresent your OWN work is IMHO blatantly unethical. This particular article is considered in press, which means that it is just waiting for a slot to be included in the main journal, but in press articles are made available to their subscribers because it helps to keep doctors up to date. Perhaps we have a better chance because it is still in press??? Without knowing anything about this type of process, I would guess the first step is to contact the editorial board. But, I don't know if a full out email/letter campaign is going to be really effective here...especially from a yokel like me Another thing that I was thinking was that if I were Leckman, I'd be livid that my work was being misconstrued. He must have some recourse.

Thank you!!! Do you think this is enough to demand a retraction of the article? Do you have any idea how to even start such a process?

PANDAS is so rare?...this makes me so angry!!!! How common is RF and SC in countries that do not have ready access to antibiotics? What about this case? http://www.cdc.gov/mmwr/preview/mmwrhtml/00000880.htm

Where has anyone stated that you’re not entitled to your opinion? I understand your good intentions in posting this site, but please understand that this is a public forum in which anyone can respond to what is posted…even if they disagree. Personally, I thought the tone of the posts were fine. Again, in my post, I stated that it makes me discount her other information if she is going to get the basic explanation of PANDAS so completely wrong. This is just my opinion, but it shows a lack of care. Therefore, I don’t think it’s unreasonable to extrapolate that into questioning how much care she has put into the rest of the information provided on her website. Just as an example, if you were reading a science website that had a lot of environmental information, but the scientist who runs the site keeps insisting that the world is flat…how are you going judge the overall quality of the site? It’s an extreme example, but bacteria crossing the BBB…is extreme and like JAG10 stated would get you laughed out of any Doctor’s office. There is also a big difference between a website that puts itself out there as a source of information, a blog, and a discussion forum. An information website has a bigger responsibility to get their fact straight. So, in that regard, she’s not just a mom like me. She is holding her site up as a source of information. PANDAS Network, PANDAS Resource Network, and The PANDAS Foundation sites all have the same level of responsibility. I want to add that I have only ever shared that I don’t believe that vaccines contributed to my daughter’s PANDAS. Never have I discounted anyone else’s story about vaccines. Finally, I believe that pointing out bad information is being supportive to the parents who visit this discussion forum. Sorry, It was Pow Pow -- not JAG10 who said they would be laughed out of a doctor's office if they said bacteria crossed the BBB.

Where has anyone stated that you’re not entitled to your opinion? I understand your good intentions in posting this site, but please understand that this is a public forum in which anyone can respond to what is posted…even if they disagree. Personally, I thought the tone of the posts were fine. Again, in my post, I stated that it makes me discount her other information if she is going to get the basic explanation of PANDAS so completely wrong. This is just my opinion, but it shows a lack of care. Therefore, I don’t think it’s unreasonable to extrapolate that into questioning how much care she has put into the rest of the information provided on her website. Just as an example, if you were reading a science website that had a lot of environmental information, but the scientist who runs the site keeps insisting that the world is flat…how are you going judge the overall quality of the site? It’s an extreme example, but bacteria crossing the BBB…is extreme and like JAG10 stated would get you laughed out of any Doctor’s office. There is also a big difference between a website that puts itself out there as a source of information, a blog, and a discussion forum. An information website has a bigger responsibility to get their fact straight. So, in that regard, she’s not just a mom like me. She is holding her site up as a source of information. PANDAS Network, PANDAS Resource Network, and The PANDAS Foundation sites all have the same level of responsibility. I want to add that I have only ever shared that I don’t believe that vaccines contributed to my daughter’s PANDAS. Never have I discounted anyone else’s story about vaccines. Finally, I believe that pointing out bad information is being supportive to the parents who visit this discussion forum.

We get 3 bottles of unmixed omnicef and three bottles with the correct amt of water. I mix it at home every 10 days. We did the same when she was taking azith too.

AWESOME!!!! Thanks for the update. I think my daughter is a better person because of her experiences too.

My children are fully vaccinated, and I don't see any correlation to vaccines and PANDAS in my daughter's case. Since PANDAS has hit my house, I've agreed to get my children the flu shots too. My daughter was at a healed point when we've done them. If she was still in an exacerbation, I wouldn't have done it. I just can't take that website seriously (vaxtruth.org)...after the blatent misinformation put up about PANDAS. Perhaps it's unfair to make this judgement, but if she is willing to just put up that c%^&, then what misinformation has she put up about vaccines? That is just where my mind goes...of course everyone is free to make their own conclusions. I've gotten into the habit of googling such things as "critisims of xxx.org" in order to get a more balanced view. EAmom and dcmom, once again you summarize how I feel...I don't need to add anything else. Thanks for all the contributions to the forum. I wish I had more time to contribute like I did in the past, but I'm trying to climb out of the chaos that has happened in my house as a result of being obsessed with PANDAS since 2009.

Someone posted this on the comment thread. It's Dr. Siegel from FOX. He said PANDAS is hard to rule out!

1. Is your child taking long term daily abx for PANDAS and if so, -- yes 2. which abx and what dose and -- Omnicef 150mg once a day (half dose for prophylaxis) 3. what is your child's age, weight and -- almost 9, weighs about 55lbs 4. number of severe PANDAS exacerbations - AND, -- 2 episodes (March thru July 2009 & Feb/Mar 2010) 5. current status of remission at this point? -- full remission w/occasional sub-clinical OCD and I suspect very mild tics sometimes...but nothing that is readily noticeable

Month-long courses of prednisone have been key for my daughter. 10mg/day does sound low. My daughter was 42-43lbs and her highest dose was 20mg for the first week. Approximately 8mos later she relapsed, and was put on 30mg for the first week. Good luck

My personal experience with ADD is that is is more like a focus imbalance. It's easy to focus and get lost in the things I like to do or are interested in, but I have a hard time balancing it with routine tasks, and chores and such. I believe that I have been dealing with ADD my whole life and the way arial95 describes it fits me to a T. Being slow is/was one of the first PANDAS symptoms we notice, and it is usually the last to clear. It can still come and go...usually we see it with some mild OCD up-tick, and then we find that she's been exposed to strep casually. It doesn't last long.

I am so happy to hear that things are well. In our district, any parent can request their child be evaluated...if there are concerns or if they suspect their child is gifted. If this is an option, perhaps you can request that she be tested? They will probably test IQ, and also look at the "developmental" things the teachers have seen in the past. If her IQ comes back in the gifted range, then you could make an argument for the honors track with accommodations for her other issues. My non-PANDAS daughter (although I think all of my kids have mild 1-2 symptoms here and there) has more of the types of issues you describe. She is more shy and self-conscious in school and her hand writing has always been bad. However, we haven't seen any issues with spelling and over-all academically she has done well. My husband and I believe that being consistent with vitamins and fish oil are really key in keeping things great at our house. We've also made a conscious decision to avoid red dye...for the majority of the time. My PANDAS daughter only had a problem in school during her first (worst) exacerbation. As you know, it was a complete break in her cognitive function. But she was fine when she started first grade, and hasn't any school issues since. For my PANDAS daughter, we started the evaluation process while she was in Kindergarten and at her worst, and by the time she was tested in the next academic year, she tested fine. No IEP was recommended -- which I agreed with. However, they were on board with putting a 504 into place. Although, eventually my husband and I decided not to pursue it. After that evaluation, the School Psychologist told me that she tested just out of range for gifted in verbal, and high average in math skills. But she felt that if given some more time to recover from her episode, she may just test in the gifted range. Which really goes along with my observations. I felt her creativity took a real hit from the PANDAS, but after a year from her last exacerbation (much more milder and shorter than the first one) I saw it coming back--and her higher reasoning...she started to really shine. I just feel in my gut that her brain needed a longer time to FULLY recover. Her current teacher has just told us that she recommend we test her again for the gifted program. So we started the process, and I pray every day, that strep doesn't find it's way back to my house. I want to say finally that despite worrying about strep, I am still optimistic that it's going to be okay.

I always liked PINS - Post Infectious Neuropsychiatric Syndrome. But I thought it just sounded weird...but if "Big Wigs" can call it CANS (That just sounds awful!!!) Then PINs is better. I don't like PANS at all either -- I think dropping the association to an infection trigger is probably the worst thing to do. Although, my favorite is sh&* on toast! I haven't had the right frame of mind to actually sit and read what these doctors have put out....**sigh** I guess I'll have to buckle down soon and do it.

This abstract states that the aspirin link to Reyes has been de-bunked. I only read the abstract. I couldn't get the whole thing: http://www.ncbi.nlm.nih.gov/pubmed/20030462 I also found this: Aspirin, Reye syndrome,Kawasaki disease, and allergies;a reconsideration of the links. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1719775/pdf/v089p01178a.pdf This is interesting to me, and I would like to compile better sources along these lines, so if anyone digs anything up, please share.