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The exposure part in the paper is on page 2 near the top. Here's the quote from it... "...Careful reading of these case series suggests that GAS is the inciting trigger and that future exacerbations are activated not only by GAS infection but also by GAS exposure and viral illnessas well." Also, like EAMom said, you can retest her. Even if a person contracts strep, it can take 3-5 days for a strep test to detect it. Or any abs can give you a false negative.

I'm glad the Ibuprofen worked so well! I do have to put the "caution" sign up that long term use isn't usually recommended and over time it can wrech havoc on the stomach. So....try to figure out the minimum you can give her to have a good effect still. At one point, I only needed to give it once in the morning to set the pace for the whole day. Also, like I think you said, you may not need to give a full dose. You can also give milk around the time of the meds to coat the stomach so it's not so harsh on it. I hope your appointment goes well!

I know many have said the lab is slower right now due to so many sample being sent in. I believe some have gotten results via email, phone, etc. I wouldn't think you need to travel just to get the results.

If this is due to exposure (which it sounds like it to me) and not infection, I wouldn't do a steroid burst just yet. Give her a few more days. If she can take an anti-inflammatory like Ibuprofen, you can try that. If you feel strep isn't finished going around the class, you could possibly keep her home for a couple days and let it runs its course in the classroom. As for her legs, is it like a restless leg syndrome? That is a symptom for some kids.

My kids never had impetigo so I never saw it first hand, but you could go to google images and see some examples. It looks like there's a range of severity.

Just because the antibiotcis are done does not mean the tics, hyperactivity, etc will return. However, it does raise a raise flag that child is PANDAS as well. I would report all of this back to Dr L. She may want to see your other child or she (or even you ped or ENT if on board) may want to put that child on longer antibiotics and/or a prophylactic. Now that the tonsils are removed (if that was the only hiding place for strep), hopefully you won't have these problems resurface. If you see the tics or any other questionable symptoms or behaviors return, still take him in for a strep test. Maybe you'd start getting some positives now that the tonsils are gone. However, let's hope the tics and behaviors just don't return!

I can't take a multivitamin since I get nauseous. Also, I can't research everything you listed, but I know I am sensitive to certain vitamins and they actually cause inflammation in me. So, you could go down the list and look up rare side effects for each one. The only way to find out what is causing the discomfort is to add one at a time and wait a week or so to see how you fully react to it.

Here is the link to Buster's history of PANDAS http://www.latitudes.org/forums/index.php?showtopic=5144&st=0&p=36300entry36300 You can get some stuff off of that. off the top of my head, some other good links, in my opinion, include What every psych should know about PANDAS http://www.cpementalhealth.com/content/4/1/13 Antibodies to Strep Throat Bacteria Linked to Obsessive Compulsive Disorder http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice The Immunobiology of Tourette's Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, and Related Disorders: A Way Forward My link for this doesn't work anymore. Does anyone have a different one? The news article about the Tel Aviv Study http://www.aftau.org/site/News2?page=NewsArticle&id=13179 I have a stack I can through and see if I can come across anything else that is an easy read. What were you looking for? An overview, something specific? You could also refer him to a PANDAS website such as www.pandasnetwork.org or www.pandasresourcenetwork.org

For those not on the PANDAS Network email list, I thought I'd provide a link to their recent newsletter.... http://myemail.constantcontact.com/News-from-PANDASNetwork-org--Division-of-ThinkPANDAS--Inc-.html?soid=1103470649803&aid=nC0apoan838 Share: PANDASnetwork.org Newsletter December 2010 In this issue PandasNetwork.org joins ThinkPANDAS Landmark Paper Affirming PANDAS- Nov 2010 Controversial Paper on PANDAS What Parents Are Reporting Dear Parents, This is a periodic newsletter that is being sent out by an all volunteer network of parents whose children that have experienced this PANDAS illness, some children are healed, some are seeking treatment. The parent network is vital because their are few doctors treating and they are struggling under the burden of our increasing PANDAS cases. Our Database of Information: We now have approximately 700 families signed up on the site and grow steadily at about 40 to 60 families per month. We are keeping each and every report of PANDAS in a database and your child's story is saved to provide evidence to doctors and hopefully epidemiological investigations. The power of the internet is astonishing and our numbers are growing quickly -- so we have joined with a non-profit entity, ThinkPANDAS, Inc. because we like their comprehnsive vision for outreach to the medical community. The mission statement is below. More details will follow in the coming months. QUICK NOTES: •NIMH-YALE IVIG STUDY HOPES TO LAUNCH IN JANUARY 2011. This is for newly diagnosed children. There is no word on the details yet. •WHITE PAPER on JULY'S NIMH Meeting of EXPERTS. There is no word on when this will be out but it may be timed with the upcoming study. The doctors are likely being careful to lay out an accurate analysis of the meeting and evidence presented. •BLOOD TESTS from DR. CUNNINGHAM (CamKinase and antineuronal antibodies results) They express their regret that your results are not coming sooner. This is a small university lab. Over 100 lab samples are pending and receiving more tests are suspended for a few months. They are considering ways to handle the overwhelming number of tests. For newcomers info on this test is found at "Diagnostic Tests" tab on pandasnetwork webiste - bottom of page •REQUEST FROM DOCTORS - VIDEOS ARE NEEDED to Educate Medical Community - please attempt to video tape and explain any movements and write in long hand or edit on the video the frequency of the movements - once a day, every hour, intermittent, etc. Many Neurologists do not understand and do not believe that PANDAS movements can be short and irregular in duration and are not typical chorea that they learned about in medical school. You can email them to us or at least, show them to your own doctor! •VOLUNTEER to be Phone or Email Support for New Parents: If your child is in recovery mode or recovered from PANDAS and you would like to be of phone or email support to new, often bewildered parents, please email us. We are making an email and phone network. We will be respectful of your wishes and remove you from this list at any time. So far there are 20 active parents. PANDASNetwork.org has joined with ThinkPANDAS, Inc. We have partnered with ThinkPANDAS, Inc., a charitable tax exempt organization. ThinkPANDAS' mission is to increase awareness of the existence of PANDAS/PITAND through educating the global medical and academic communities in an effort to advance detection, treatment and access to comprehensive medical care for patients, and to provide a centralized clearinghouse of responsible information, resources, support and advocacy for patients and their families. Please look at the www.pandasnetwork.org to see the members of the Scientific Advisory Board and a statement about ThinkPANDAS by its founders, Rochelle Fried and Kari Steinberg. A website will be coming soon. I know there are other PANDAS groups you may be affiliated with, and that is great! Each group can work to disseminate information and attempt to drive funding for research. LANDMARK PAPER Jrnl of Child Psychopharmacology-Nov10-Murphy, Kurlan, Leckman (pdf file) This paper was written last month in response to the recent upsurgence of PANDAS families. It is a gift of time, energy and compassion on behalf of the doctors who wrote this paper and and the doctors who have treated our children and shared information. THANK YOU DOCTORS! The doctors call on our advocacy groups to work with them to determine how best to recognize this illness and heal our children. They discuss why antibiotics, IVIG or plasmaphoresus may be helpful to parents but cannot, because clinical trials are few, yet outright tell the medical community how to treat PANDAS cases specifically. Our parent network will have to continue to inform them of our successes. Please take this paper to any physicians you know of!! It is the most comprehensive analysis of PANDAS and tentative treatments done to date. Attached is a more simplistic summary of this paper put together by parent volunteers. We hope you find it helpful. Summary - Murphy et al 2010 (pdf file) CONTROVERSIAL PAPER Jrnl Child Neurology-Nov.10-Mink, Kurlan (pdf file) Four cases were pondered here that had acute onset of physical and psychiatric symptoms following probable illnesses. The main case history reviewed sounds PANDAS-like though the child is 19 yrs old and post-puberty. PANDAS is usually with younger children under age 12. This paper was written by two physicians who have backgrounds in Neurology and Tourettes - in other words primarily movement disorders and question the PANDAS "hypothesis." This is an excellent paper to understand the confusion Neurologists often express surrounding PANDAS patients where movement issues are present. They discuss various forms of encephalitis that have mood and movement issues. They discuss Sydenham Chorea with accompanying Rheumatic Fever. They do not express and opinion on treatment however do recommend doing MRI's and spinal taps which historically shows NO results for PANDAS kids. They further confuse things by stating, "Apart from the importance of accurately diagnosing Sydenham Chorea, it is unclear if.....there is value in separating out cases dominated by tics and OCD symptoms..." page 3 mid-2nd column. PANDAS children usually have intermittent, subtle and fleeting movements that are difficult apparently to classify as chorea for most Neurologists as 100's of PANDAS parents can attest. HOWEVER, they do ask Neurologists to be CURIOUS and listen to the child's clinical picture. That is a first step. They do ask for case histories to be carefully documented and videotapes be made of children suffering with movement problems with PANDAS. We can surely supply them with some videotapes................ Antibiotics will almost always calm things greatly, though not 100% --- it is too bad they do not mention this. What Parents Are Reporting Multi-Generational Family Reports: There are six reports now from families that the PANDAS syndrome has been experienced for at least two to three generations. This is not the norm but it is an interesting clue perhaps for all of us that there is a lack of proper immune function in relationship to the streptococcus bacteria and perhaps other bacteria or viruses as well. In these family reports the symptoms of PANDAS diminished in the late teens to early twenties - and the illness was equally divided amongst men and women. Antibiotics, Steroids, IVIG or Phoresus: The Table of 200 Cases on pandasnetwork.org will be helpful for review of the following. There are more treated and recovered and a smaller percentage of treated but NOT RECOVERED cases that have not been added to this table. The theme we are hearing over and over is: ONE YEAR OUT FROM TREATMENT IS USUAL, GRADUAL, FULL RECOVERY PERIOD. IT IS SLOW and DELIBERATE with setbacks at times, but HEALING GENERALLY HAPPENS. (Swedo and others report full recovery between 83-87% of the time with one treatment of IVIG or plasmaphoresus.) The case for antibiotic only treatment: Some children get better (according to Dr. Tanya Murphy, Dr. Rosario Trifiletti and from a few reports I have heard) on a several month course of various antibiotics. A parent will have to watch and decide if improvement is substantial enough. Some children, like my child, mildly improve on antibiotics but the syndrome is not stopped even after one year of antibiotics. These children then get IVIG or Phoresus and all report being gradually improved at three months, six months and then recovered at one year. Just like many forms of severe autoimmune reactions that cause psychiatric and/or physical movements (like Sydenham Chorea (SC), or rare forms of autoimmune encephalitis) it is important to watch healing over a several month period. PANDAS is rarely, but yes sometimes, that severe based on the reports parents are giving us. CASES STRUGGLING WITH RECOVERY: I do not like making blanket statements and I'm not a doctor but the reports I am hearing are that children having a tough time with recovery often have the following one or two of evidence of possible immune deficiencies: extreme tooth decay to the root (with children ages 4-10); iron deficiencies, chronic Upper Respitory infections; a history of repeat antibiotics needed to clear various infections; failing to hold vaccine(s), repeat strep, repeat pneumonia, skin lesions or outbreaks as of yet undiagnosed; staph infections; siblings or parents with strep infections or carrier state issues in the home. What is disturbing is that there is a disconnect between the Pediatrician and pondering these chronic issues and the need to do a thorough immunological workup with a reputable Pediatric Immunologist. There are many cases now of young children being diagnosed as PID (primary immune deficient); CIVD (common immune variable deficiency) or Celiacs who prior to the PANDAS illness were not diagnosed as such. Many PANDAS cases do not have an immune deficiency issue. Again, the above is mentioned to help you investigate unusual symptoms that your Pediatrician may have ignored. Co-infections need to always be considered because other infections on top of PANDAS symptoms weaken the body and it is harder to repair: look for mycoplasma pneumonia, tonsil and adenoid problems, chronic ebstein's barr, lyme disease - often the standard Western Blot is sufficient but if in a lyme-ridden State in particular, Igenex may be wise--but it is controversial. Once in awhile - there are a few cases that are just difficult to treat - the vast majority are not. These families I know of and I hope they will provide clues to us all....as they find the way to heal their child. Confusion on the Forum - Suggestions to Make it More Helpful: www.Latitudes.org/forums This is hands down THE best forum for parents to meet out there. But the forum is getting very large now and is tricky to navigate. It is a great tool and a comfort .... The forum helped me find other parents to help me when I was at my lowest points. I have a few suggestions when sharing ideas with other parents: Try to get on the phone and talk to the parent and listen to each child's case history Ask how long their child been ill, i.e., when was the Acute Onset? A newly ill child (within the last few months) and one that has been ill for two or more years with no treatment - will have different results from treatment. The longer one is ill, the trickier it often is to calm things down. Compare Immune Histories. For example, a relatively healthy child with a sudden onset of PANDAS may repair differently than a child with chronic health issues. Compare PANDAS Histories. There are many parents that have recognized PANDAS exacerbations for a number of years. Often each exacerbation (according to Swedo and others) becomes more difficult to calm down. Ask about the State or Country they live in. Often certain strains of strep behave differently in various areas of the U.S. and certain antibiotics may be more effective in those areas. Recently there was an outbreak of PANDAS cases in Boston and PA/NJ borders with back-to-back reported cases to PANDASNetwork and doctors in these areas. We hope this is helpful to you and I find it distressing that the parents have to lead the way with this illness, only a few doctors nationwide are working really really hard to treat our kids. The new study will help provide more answers -- but it doesn't come soon enough. Sincerely, Diana Pohlman (California) Contact Information pandasnetwork@gmail.com

I'm so sorry! Just when you really think you've hit rock bottom and there's no where else to turn, you'll muster up strength and maybe some hidden adrenaline to carry on. That specific example you gave reminds me of my son and trying to get ready for the day. That was such a stressful time....so many things surfaced with what is suppose to be such a simple task. I hope you, and your son, feel better soon.

Thought I'd just let you all know we had 533 views on youtube for this!

The RF connection is what helped persuade my ped to give proph antibiotics. That and she made a few phone calls to local hospital to get their opinion (when she told me that, I thought for sure it was a big fat NO again considering I can only guess whom she spoke with) and now they are saying peds can give it on a case by case basis. Two years ago, that wasn't the case. It worries me to see the tide changing in my area for the good and I just worry about the possibility of it sliding back. If that happens, I just don't know how we could fix it all over again. I guess we have no choice but to wait and see what this paper will say. Maybe we're all worrying for nothing (fingers crossed).

Just to clarify, my son actually does not backslide off antibiotics. Not sure if I implied he does.

Exactly. In our case, I have 3 children that do not get symptoms of strep. So, the only way I know if one of my non-PANDAS kids need to get swabbed is if someone in their class has strep or if they infect their PANDAS sibling. If the latter happens, well, we're already in an exacerbation and the damage has been done. Also, in our case, my PANDAS son has already had 3 assaults on his brain. Who knows how many more it can handle Finally, with my son, exacerbation #2 included wanting to do self harm and no eating amongst so much more. He was non-functioning. The older he gets, the more I would worry he would actually follow through on self harm threats if they should happen again. Also, in #3 we had the residual OCD. Luckily, we overcame the residual but what if it becomes even more ingrained if it happens again....

Lori Ann, 100% recovered is possible, however it can take quite awhile. Like I stated in my summary, we did have to overcome residual OCD in exacerbation #3. And even when you think you've reached an acceptable amount of recovery, out of no where you're child will do something (in a positive way) you'd never think you'd see again. Then time and again, you will see quirks or such, but one has to also remember that no child is "quirk free" ...PANDAS or not. It's a matter of learning what your child's own personality is like all over again.

Is it this one? http://www.latitudes.org/forums/index.php?showtopic=10768&st=0&p=91075&fromsearch=1entry91075

My son went quite awhile without being on antibiotics and staying in remission and strep free. Did Dr K give you any protocal to follow to help you deter another strep infection or another exacerbation? My son did have t and a surgery. During the time of no abs and being in remission, he remained on Omega 3's, got a multivitamin and I gave Ibuprofen if I even thought anything seemed off. I also did get healthier with my family and no vaccinations. I also suggest contacting the school and getting calls when strep is in the class. My kids went for strep tests even if tehy were exposed since they are all asymptomatic. Often, they would give an antibiotic when wating for culture results. Even while my son was well into remission, we did finally come to an agreement with a ped to add a low dose prophylactic antibiotic during the school year (HUGE deal in our state/city) and we now give a probiotic as well.

Yes, for the record, I too have much respect for Dr K (even though I have never met him). When I list what PANDAS doctors I know of and would suggest to others, he is definitely on the list! I think when we, as parents on a forum and who have all experienced such life changing drama, we could find something we have an opinion on with any doctor. I look forward to this white paper. I'm sure it will be better than what we have now and will show us, researchers and doctors what needs to still be worked on. I sure hope it's out soon so we can put the speculations and guesses to rest. The ideal to have everything perfect when it comes out, but the reality is it's just the beginning.Like someone else I think on here said, be expected to still bring research, to have to be educated yourself on the topic, and to still question something that doesn't seem right for your own child.

Fixit, it's moms like you whose children stayed well for awhile then relapsed or used to get better with abs and no longer do that are a harsh reminder to me that I cannot get relaxed and I can never forget. It's because of you, that I know I must always fight for my son even if he is currently well.

The "white paper" I believe will include a guideline for diagnosing and treating PANDAS. That's what the doctors were discussing at that big meeting earlier in the year. From what it sounds like in another thread, they are still working on wording and agreement. Perhaps they are also waiting for more articles and studies to come out? I think they have a plan in motion.

Summary Exacerbation #1 Sept 2008 Antibiotics within 2 weeks of onset Approaching remission when exacerbation #2 hit. Exacerbation #2 Nov 2008 Antibiotics within 12 hours of onset Reached 100% remission Exacerbation #3 March 2009 Antibiotics within 12 hours of onset Reached 100% remission. Negative strep test in between each exacerbation. All family members got tested for strep each time. One may look at this and say "Well, he still got better on abs only" (note...steroid burst in #2) but the exacerbations varied in severity (#2 was devastating) and residual OCD and longer recovery occurred in #3. We've been to heck and back and I'm not ever letting my son return there without a hard fight.

True. I am elated that people will be diagnosed faster, a trial of antibiotics even w/o a + strep test may occur more often, and the higher chance of being able to recover with antibiotics only snce it may be caught faster. However, as I look at it from own personal experience and what I need (yes, that's self fish but I need to look out for my own child too), we never had a hard time getting antibiotics when the exacerbation started since he has a documented strep infection for each one. For my family and our current personal needs, the goal is keeping him from getting sick again. I am nervous if that option is off the table for doctors to make on a case by case basis in the future. Hopefully, a small clause would appear giving doctors a loop hole to give abs if they feel it is needed in that specific child's case.

Oh no...I'm sorry! Where was she in terms of recovery from IVIG? Was she doing well? If you haven't started Ibuprofen, you may want to consider adding that as well.

bumping this.

The problem with posting on this is we can't pick the brain of the original speaker (in this case Dr K). We can hypothesis his theories, but really don't know. It makes me wonder if those who need antibiotics to maintain a form of remission, still have a lingering infection somewhere that's being kept under control by the abs. By already having a lingering infection, they are going to more prone to a faster, full blown exacerbation. So, that makes it look like kids on long term full stregth abs are more prone to a relapse. So, we need to find out why those kids need thsoe full strength abs to maintain remission. Does that make sense? You then have a separate group of kids (like mine) that can maintain remission without antibiotics but have had so many assaults on his brain that I cannot sit here and just wait for him to get sick again and perhaps have it be the time when I can't get him back. For those kids, a low dose antibiotic may be okay. Again, every child and their reason for needing/wanting antibiotics varies. There's no cookie cutter answer. Vicki, Dr. K meant, as stated on his website that long-term, full strength antibiotics have not proven to be helpful in his practice for PANDAS patients. He is very confident of his protocol and experience, and he said he believes that patients relapse faster if they are left on antibiotics constantly. This is scary to me also, based on reports from this forum, and a friend I have whose child has done great over a year on abx. I also hate to have my son dependent on them, or developing yeast infections, super gut infections because of abx, so I am a bit interested in trying. This is easier for me right now b/c my son is still functioning well in school, and his worst problems during exacerbation were tics/adventitious mvts/hyperactivity, which quickly resolved .. . . . .we have not had the exorcist syndrome yet. I may change my mind if things get that bad for us soon. I really appreciate everyone's comments, and I knew there would be some debate about the abx issue. I do not know what the White Paper will advise in that regard. . . .he did not say. Keep the lively discussion coming, and friendly as always!