dcmom

julie- I don't know anything about the illnesses your daughter may have, but, my daughters both have pandas, an autoimmune disorder (in my mind) and they have REALLY benefitted from the use of oral steroids, and high dose iv steroids. This is done for several autoimmune disorders.... have your doctors considered this type of treatment?

Where do you live? Hopefully someone her can help you with a doc. I would suggest that you RUN to a pandas doc. Firstly, re the T&A surgery, most pandas docs would put your child on more extended antibiotics than "normal". A few of us have seen our kids have flare ups due to the T&A surgery. Secondly, some kids have worsening episodes, esp if untreated- however mild your case, I would want a doc already on board if, god forbid, you need them in the future. Also, for the record, I am finding with my kids that the more immediate and aggressive we react to flare ups, the shorter term they are. Good luck.

We moved from DC to NJ last year ( but yes, that is the DC). There are several pandas moms, with ocd kids on the PANDAS forum in the NVA/DC/MD area. USF is the University of South Florida. They have a three week intensive outpatient therapy program, which is excellent.

GREAT news Dut! SO happy for you! We have found ibuprofen to be extremely helpful! Now, if I see any "early warning" pandas signs, we culture, and then add 5 days of daily antibiotics and regular ibuprofen dosing. I believe this has helped my kids several times. When we haven't gotten the resolution we hope for, we move to steroids.

Ok- I will stop being lazy Here is some research by Buster. It gives great info on titers in relation to pandas and/or strep. It also refers to the study arial and I mentioned. Hope this helps. I think for all parents who have been here less than one year, if you have not done so, there is a lot of great info pinned to the top of the pandas forum. Also, a pretty exhaustive collection of studies and information is at the website pandasnetwork.org. Reading through all of this info will help you immensely. By Buster: I've gotten a lot of questions regarding ASO titers and there seems to be some confusion about titers and PANDAS. Hope the following helps: 1) Is PANDAS a reaction to elevated ASO or AntiDNAseB titers? The research indicates no. ASO and AntiDNAseB are responses (antibodies) to exotoxins from Group A Beta-Hemolytic Streptococci. PANDAS is thought to be a reaction to another antibody that's created in response to the streptococci. The theory from Cunningham and Kirvan is that there is a monoclonal antibody that is created that targets a particular carbohydrate sequence on the streptococci. This monoclonal antibody is supressed in most people but for some reason it is not supressed in PANDAS kids. 2) What amount of streptococcus is necessary to cause a detectable rise in ASO and AntiDNAseB? This is unknown. Some people respond with high antibody counts while others have low counts. It is just not understood. Studies in 2003 by Shet and Kaplan indicate that ASO rises in 53% of patients with culturable strep, AntiDNAseB rises in 45% of patients with culturable strep, and either ASO or AntiDNAseB rises in 60% of patients with culturable strep (i.e., 40% don't have such a rise). 3) Does an elevated ASO or AntiDNAseB indicate a persistant strep infection? Apparently not. Some people keep high AntiDNAseB for years. The rate of fall is just not known. 4) Is a high ASO or AntiDNAseB bad? It is unclear, it indicates the body is still producing antibodies to antigens from strep, but PANDAS is likely related to a different antibody and it is not at all clear if the rise/fall of this antibody is linked to the ASO or AntiDNAseB titer. 5) Is there a test for this antibody associated with PANDAS? Not yet. There remains considerable debate about the antibody and whether the antibody causes inflammation or just interference with basal ganglia function. Swedo and others thought the debate over PANDAS would end when the antibody was discovered. Unfortunately, others have not properly repeated Kirvan and Cunningham's experiment and others have had difficulty correctly identifying PANDAS patients. Regards, Buster

Please look at the pinned threads above. I am pretty sure Buster pinned the study, that shows that a pretty large percentage (2- -30% ?) of the general population do not mount high titers to strep, even after known infection. These titers are actually a response to the toxins of strep, not the strep itself. I do not believe there has been any correlation made, negatively, about people that don't make high titers. Both of my kids had culture positive strep, with no titer rise. We have opted not to track titers, as for us, they are meaningless.

WAIT! I hear it is more sensible to just go ahead and treat the dog, than to go through the expense of testing....

Thanks everyone. Here are the answers and thoughts on your responses to continue the conversation... Arial- It may be a type of ADD (non hyperactive). I will have to look more closely at symptomology for girls. We don't have hyperactivity. Her focusing seems ok- she can focus on a difficult task and get it done, but she does like to talk to me A LOT during homework, pet the dog, look for her library book, etc. I am going to talk to her about the possibility of longer time periods for tests, etc. Dut- my daughter also tests very highly, when the test is focused on math concepts. Her computation is less stellar. She also has been relatively healthy, and I do see improvements in amount of time doing homework, etc. She also is VERY slow at getting out of the house! EAmom- I agree third grade teachers have a habit of NOT looking at the bigger picture. This completely changes in our district by third grade, where Literacy is focused on reading, comprehension, vocabulary, longer term writing assignments and some grammar. In these areas I think my daughter could really excel. She is never going to be garnering HUGE class participation points, but she could probably do the vocab and reading comprehension now. Our school is small, and in a high achieving district, so I think the caliber of kids is fine in the on-level classes. I will say, however, that as a whole, the honors kids do seem to put a lot more effort and value on academic success. My bigger concern is that elementary feeds to middle which feeds to high school. All the same kids. If you are in honors track, you are on track to easily complete lots of AP courses in high school. If you are in on level classes, yet capable of more, it is hard to move up. My concern is that her major issues now are bigger problems for third graders, and not necessary to do well later on. She definitely falls into the category of kids that "slips through the cracks". Well behaved and academically successful enough not to earn any extra help from school, yet not operating at her full potential, in my mind totally due to pandas. My gut is telling me to push to get her into honors for literacy, and leave her in on level math- and see where that goes. I don't know how cooperative the school will be, also. She is very aware that her sister is in the honors program, so that adds a difficulty piece- not as a pandas parent (they both have pandas), but just as a parent. EAmom- as a side note, she is a major animal lover, and wants to be a vet or horse veterinarian. I panicked a few weeks ago when my college age niece was telling me how hard it was to get into vet school, yada, yada, yada. The combo of that, and of the kids being fairly well so I am able to delve into the smaller issues, are what have me looking at this.

Well, you know things are pretty good around here (fingers crossed- no jinxes) when I get to these questions... Firstly, I want to thank everyone for weighing in in September about our decision to push the school to move my older daughter into the honors classes at her middle school. (Recap: she is in sixth grade, and due to being new to the district last year, with lots of school avoidance ocd- the school kept her in "on-level" classes when it was clear she should be in "honors") We decided to take the chance, and demand the school to move her up in the middle of the first marking period this year. Thankfully, her English teacher was in complete agreement and helped us with this. She is maintaining straight A's and delighting in the challenge. Thank you to those who pushed us to challenge her, and demand the school do the same, in spite of whatever ocd she has had, or may come her way. Now on to her younger sister (third grade), and my questions. The younger one is different in many ways. She is very, very shy (bordering on selective mutism in preschool, improving by baby steps every year). She is not as much of a "show off" and people pleaser as her older sister, content just to blend in and move along. However, both my husband and I feel she is extremely bright. Her insights and use of vocabulary and expression are extremely sophisticated. She typically tests "advanced" in math. All of this, however, does not seem to translate into her schoolwork. Part of it, I feel, is still the subjective nature of grading in elementary school. Since she is not out to prove what she knows, she is not they typical "star student" like her older sister. The other part gets a little more vague and complicated, and is where, I think PANDAS has played a role. She writes beautiful stories and papers (content), yet her handwriting is just passable, her spelling is extremely "creative" and she still has letter reversals. She also seems to work much more slowly than most (I don't see ocd as a cause), sometimes failing to finish all problems on a test or in class assignment. Homework does go slowly at home, as well. Mainly, to me, it seems her schoolwork is not reflective of her intelligence. She tries hard, and values her work. Her first grade teacher had NO concerns, and felt any issues she had were "developmental". Her second grade teacher felt the same, also feeling that the fact that she has missed lots of school (probably 40 days of first, and 40 days of second) contributed. Has anyone seen academic issues like this? Her teacher this year is lovely, yet BRAND new, so completely inexperienced. My next decision is for the end of this year, which is when I think, she will have to be placed on honors or on level track. As I have seen with my daughter, once you are tracked, the school is very resistant to move a student. It is also MUCH harder for a student to move into honors as opposed to being there all year, from an academic and workload situation.

smarty (I owe you a pm, busy weekend ) Have you researched dysgraphia? There is some good info on the net, will look for it early next week for you. There is a lot with dysgraphia. My daughter seems to have it, mildly. Handwriting not great, some letter reversals (she is in 3rd grade). She loves writing however (thankfully). We and her teacher, do not focus on spelling, handwriting or letter reversals- we praise her for her effort and creativity, in an effort to preserve her love for writing. On another note- this all is very similar to younger dd's academic career. We feel she is MUCH more intelligent than her work shows. She is a solid B student, but I think is AT LEAST as smart as her older sister, honor student. Her speech, vocab and insight is WELL beyond her years. In certain types of testing, she usually tests advanced in Math. YET- what gets onto the paper, and in the report card does not seem to keep pace. Not sure why? Combo of dysgraphia, shyness (borderline selective mutism) and anxiety? Confusing?

Socal mom- No joint pain here- but I think the combination of what LLM and 3boysmom said is key. There are certainly LOTS of issues that come with pandas that either are impossible to list, or appear as one thing and are actually another. I think the key would be, "what does not go away with proper pandas treatment?" I would imagine joint pain could be part of the autoimmune nature of pandas, could be sensory related, could be anxiety/ocd related. If it is one of these, it should go away. The red flag should be, if all pandas stuff goes away, and the joint pain remains.... Hope this makes sense.....

I think Pow Pow said it the best. Many of us had to watch as our children lost EVERYTHING that made them who they are. We had to watch as they lost their mind. I had to watch this with two of my kids. We did not try meds for the symptoms initially, thank goodness, because we immediately found docs who understood their suffering, and wanted them well. Possibly (although unlikely, since we tried one SSRI at a later date to no avail) we could have found a pill to help with their major symptom of OCD. But, where would that leave the other issues they had: anxiety, cognitive difficulties, separation anxiety, anorexia, emotional lability, oppositional behavior, depression, chorea, etc? We were able to get PEX- a so called NOT recommended, risky treatment. This treatment brought both of my girls back to 100% within days. It was literally a miracle. Do NOT put me in a room with ANYONE who would like to deny my child, or any other needing child, this treatment. They term antibiotics, steroids, IVIG and PEX "risky" which is nonsense. These are NOT new and untried treatments. These are used EVERY day for other illnesses. There HAS been some scientific evidence of their success for pandas. Yet these docs continually make it harder for all of us to access this treatment. And, on a personal not. One of these docs works in the hospital where my children were born, where my mother works, in my "hometown" area. I have had several email debates with him over his opinions on pandas. He did engage with me, and all I could give him was MY truth as a mother who actually has two of these children he likes to write about so frequently. He actually admitted that it sounded like one of my daughters probably did have pandas (she is a textbook case- there is no other possible explanation- she fits ALL of the criteria and more. Towards the end or our very friendly email debate, I told him I planned to set an appointment with him, so he could see my kids, and we could discuss his thoughts. His response to me was not to bother, he does not "treat" pandas. Well there you go- I mean where is the credibility? If someone wants to author papers upon papers on pandas, shouldn't they at least WANT to see some of these kids, especially if they fit the bill even according to them.

I vote for sh#$ on toast (for those who remember).

To me this sounds good. Sounds like they are saying lets not worry about etiology (which can be hard to find) but lets focus on treatment! Since these docs are also engaged in an IVIG study, I am thinking their "treatment" will include MORE than SSRI's. When and where is this, and is anyone going???? I want to hear all about it!!!

I have never heard the recommendation to wait on these tests until off of antibiotics. We see 2 pandas docs, and also saw a sympathetic ID doc. Many pandas children remain on antibiotics indefinitely, and still do these tests. Maybe someone can chime in on any reasoning, otherwise, I would go ahead and get the testing done.

A throat culture (not rapid) is the "gold standard" test for strep. Blood tests are not reliable, if negative, because there are a percentage of ALL people (not just pandas) who do not have a rise in ASO or AntiDnase. I believe this study in pinned at the top with lots of Busters info. Blood testing can give you a clue as to whether there WAS at some point a strep infection, but really cannot tell you when, or if it is still active.

No tomatoes here I cannot argue auto-immune vs cykotine storm- I am just not that scientifically literate From my perspective, though, things are different- and we both know we (LLM and I) have headed down different yet parallel paths, yet we are dealing with SO much of the same, I value our friendship and her support greatly. I have been fortunate (I guess) in that my kids have been textbook "Swedo-style" PANDAS kids. Totally normal healthy kids. Overnight onset of OCD, mild chorea, sep anxiety, etc (the only thing we haven't had are tics and ADHD) at the same time as positive strep culture. Immediate and full response to immunomodulatory treatments (pex, steroids). Long (not long enough) periods of "normal" between exacerbations. Episodes after the initial caused sometimes by things other than strep (viruses, etc). This is all written about in Swedo's work. So, for me (other than a fruitless, waste of time, detour to an LLMD) things have been relatively (ha) simple. I tire of testing and retesting them for everything under the sun, and believe me, we have pages and pages of results- when ALL come back normal. No immune deficiencies, no myco p, no lupus, yada, yada, yada. The ONLY test that showed an abnormality was Dr Cunningham's CAM kinase and anti-neuro antibodies. So I look at what my kids have as something on the same spectrum as SC, rheumatic heart disease and even psoriatic arthritis (which may be caused by strep). Since these illnesses are generally thought to be autoimmune- I guess I just accept this at face value. And since my kids (so far) respond very well to the treatment for autoimmune disorders, I (currently) have that luxury. I have come to a sort of acceptance that this is a disorder that we may need to be vigilant about long term, and I have let go (a little bit) of searching (daily) for a total cure. I guess I feel like if so many other people and docs cannot come up with cures for all of the other autoimmune diseases out there, the reality of ME finding it is small. I think this gives me some peace, and an ability to manage our lives much better on a daily basis. Maybe this is bad in a way, too, I don't know. This is why I am fearful (a little bit) of losing the simplicity of PANDAS. Yet- I do read this forum faithfully- keeping an eye on what everyone is doing. I honestly don't know what this means. Why do some kids recover easily, and others have a really hard time? Why do some treatments work for some of our kids, and not for others? Are we just dealing with different kids? or different illnesses? different genetic issues? Jeesh!

I don't want to belabor the point- but I do want to be clear, because this article does us all a disservice. They DO recommend looking for the cause. And, if the cause is infection they recommend appropriate therapy. This means, if your child has strep, you will be prescribed 14 days of a cephalosporin (most likely). That is it. Beyond this, they recommend symptomatic treatment- which would mean appropriate meds for OCD, tics, or ADHD. See their chart which recommends symptomatic treatment ONLY for pandas (while SC gets steroids, etc). YOUR doctor is going to show you this chart, and use this as the rationale to refer you out to psych. They are clear that they do NOT recommend the "routine" use of antibiotics or immunomodulatory treatments FOR PANDAS. Prior to these treatments being tried they want to see clinical trials done for efficiacy. Well- this leaves our kids stuck. I can bet they will NOT accept any trials (they don't accept ones that HAVE been done) and they will argue this for ANOTHER fifteen years. In the meantime OUR kids get no treatment? There is a lot of history here with these docs, and I think you need to read between the lines a little. This is a response to discredit the wonderful paper that came out in the last year "A way forward". They are not looking for a way forward, they are looking to cut us off at the knees. (and I am not a bitter person by nature, lol).

This article absolutely states that for pandas the routine use of antibiotics and immunomodulatory treatment (steroids, ivig, pex) are NOT recommended. This is in the second to last paragraph of the full text. I am completely optimistic about pandas, my kids are doing well, and I think if parents can obtain proper and aggressive treatment, it doesn't have to be so hard. BUT do not be fooled, the authors of this article DO NOT care about our kids, they do not understand their suffering, and they WILL not treat our kids. Their "appropriate therapy" for PANDAS (and it clearly states this point) is exclusively "symptomatic"; SSRI's and CBT.

Total (submit your favorite derogatory curse word here to describe ignorant docs)! This article is just an attempt to discredit pandas, and the docs who treat. Sure they are saying, yes, many kids have acute onsets of neuropsych issues- but there are SO many causes- and since docs don't always hold to the criteria, lets just trash pandas, and throw all acute onsets together. And since they are all thrown together- we should be sure to ONLY treat for symptoms. Cowards. So they are agreeing there may be some pandas patients, but few, and they cannot be treated (appropriately) because we have no studies. I concur with EAmom- I am very afraid of the autoimmune label going away. In our experience, our girls have an autoimmune disorder, and they benefit only from treatment for autoimmunity. The do not need daily antibiotics, and franky probably not prophylactic antibiotics. We tried SSRI for one, no response. What we get incredible response from are steroids or pex. Unbelievable.

I agree with coco- If I had to do it all over again, I would evaluate each vaccine carefully. What are the chances of MY child getting the disease? What are the chances MY child would DIE from the disease? I would weigh this against getting a vaccination, which could be a major risk. This would cut down a lot of vaccines. It may also change the AGE at which MY child should get the vaccination. I would hope to find a smart open minded doc to be my partner in this. My kids have had all their major vaccines (prior to pandas, and my eyes being opened). We will never do flu shots. We won't do HPV. We have held off on a tetanus booster and a meningitis vaccination for now.

I am very suspicious of anything authored by Kurlan and Hopkins. If anyone has access, please let us know.

Hi chase- Sorry you are dealing with this I am in NJ also- where are you, and do you know about the support group that meet in the Menlo Park area once a month (I don't get there often myself)? We don't see Scott Smith or Dr B- so I can't advise you firsthand, but what I would recommend, if finances allow, is to see both. We have a relationship with 2 pandas docs, because I think it is really important to be able to aggressively treat a new flare up immediately. I feel I cannot risk not being able to get a response from a doc within 24 hours, so I don't put all of my eggs in one basket, so to speak. It would probably be helpful for you to have Scott locally. I am not sure of his protocol, have heard he will do IV steroids (low dose) and maybe IVIG. Dr B seems to typically do multiple IVIG's and definite testing for different infections and immune deficiencies. Dr B seems to take most insurance, Scott Smith doesn't take insurance. How old is your daughter? I have two daughters with pandas.....

Karen- You may want to post this on the pandas forum also. Rogers has been mentioned there, and although I don't know of anyone who has direct experience, there are some that have looked into it, maybe they have a contact for you. My kids did a three week outpatient program at USF, which I adored, if something like that is an option. It was for ocd, however I do think they work with TS, and presumably anxiety. Eileen

Dean, be prepared to give it some time. Like I said, for us, the initial episode took 30 days of antibiotics. Try to look at the weekly trend, rather than analyzing daily. For us it was slow calming down and improvement week over week, until back to normal around 4 or 5 weeks.