norcalmom

here is site for more info. you need a doctor to prescribe this I think. We get ours from LLMD. Don't be fooled - it is not a supplement, it is powerful. We had to start with one drop per day and work up to 7drops 2x/day (we put in cranberry juice - only way he will take it)

About 15 months - symptoms prior to IVIG. ABX worked at beginning, ds established new baseline (better than before) and then he would catch a cold and have an eacerbation- but the reason we got hte IVIG was because his baseline when not in exacerbation was getting worse and worse. Had virtually every pandas symptom to some extent when in an exacerbation -tics, sep anxiety, decline in work, irritability, ocd, body dysmorphism (slight), nightmares, frequent urination, bed wetting, insomnia, nightmares, obsession with death) . BUT - he was surprisingly high functioning. Missed some school, but only a handful of days over that year. IVIG was the best thing we did. We did 2. Second one about 9 mos after first, after I could see him sliding back again. Since IVIG #2, we found mycpoP and are treating with different antibiotics (treating for Lyme too -test results equivocal, but similar to mycpP treatment and I figure since mycoP common in Lyme patients, he may have Lyme. Working very well. No exacerbations since last IVIG and new antibitocs. Still has instusive thought -OCD, and some irritability/inflexibility, but that is only symptom. May be what we are left with after 3 years of this just started some very, very low does SSRIs. I'm glad I waited until now for that. I don't think they would have done much of anything in exacerbation! Good luck. It was a VERY stressful decision to do the first IVIG. The second time was soooo easy to decide. The only thing I would do differently is we would get steroids a couple days before IVIG and a few days after. My son has horrific response to the IVIG (splitting head ache and nausea for days following).

I'm so sorry to hear about your son. Did you get copies of your tests? I'd recommend starting to keep your own records. What was your sons mycoplasma number for IgG and IgM? Many doctors will tell you that you are negative for mycoP with an IgM that is in range, but a high IgG. If you have had penuemonia in your home, I would be highly suspicious of an active or recent mycoplasma infection. The only way to really know if it is active is to track the IgG over time (if IgM is negative..which if common in people that have chronic mycoplasma). I don't know how much research you've done since your are new to this, but, pandas is a condition that happens AFTER an infection. The infection does not need to be active. Of course, you must do everything possible to investigate all infections and immune disorders (that lead to infection) to make sure they aren't in a constant state of infection in order to break the cycle, but it is possible to have no chronic infections - and to have pandas. Its an immune response. And for many (most) it will flair with illness (any illness). I've heard that some kids that catch it early and get on antibiotics early can recover that way alone. Many of us here had to get IVIG after the antibitocs stopped working for us. They work in the beginning, but somehow after a period of a few months the immune system figures out what's going on.. for us (and many here) getting a cold after a couple months of improvement (because of antibitocs) caused an exacerbation. This cycle usually continues and the child needs IVIG to "reboot" the immune system. be sure to take plenty of probiotics...good luck...and do everything you can to get to a pandas doctor. i know the money situation is tough, but they really are the only ones that know what this is and how to treat it. You can start with some emails to them and a phone conference (that may cost you a few hundred dollars) and if you decided to do that - send them copies of all your records ahead of time and have your list of question ready to go. They may also recommend some tests prior to the conference if your doc hasn't done them, or be willing to consult with you local doc too..

yes - you can have just tics. Swedo's original paper/study written on pandas contained a group that were tics only. that group did not have as high a rate of a response to treatment, but many did respond (and her number were somewhat off because of very small sample groups). My nephew had tics only for years (was dx'd with ADD and tourettes) and years later when I told them about pandas (because of my research for my son) he got IVIG - and responded well to it. He also had some sleep issues that disappeared - which was another pandas symptoms (although they didn't know it). Does you child have any night time problems - bedwetting? insomnia? nightmares? separation anxiety? extreme irritability? annoyed or disgusted by something that is not annoying or disgusting to others? new fears? a decline isn school or ability to pay attention? all of these are symptoms too. And OCD - can take on many forms. Basically almost any ODD behavior (or avoidance) can be OCD in kids, it hard to tell what is "normal" phase for a kid and what is OCD. My child had it for months before I knew it was OCD. Just a kid going through a phase - is what i thought.

my DS is going to be 13, and is about 125 lbs. He is on 300mg/day (150 morn/150 night). this for Doryx (not Doxy..should correlate but not 100% sure). Its high. Not everyone can tolerate that, but that is the does recommended for adults with chronic mycoP. He will take a break for a couple weeks soon. I don't know about the retest yet - I asked at my last appointment (we had been on the Doryx for about 2 months and they said not yet) but we were trying to see if it was going down - not up. I'd assume it goes down slower since I know it can stay high for a long time (meaning you had an infection - it may not correlate). But going up is a different story. You could email Dr Garth Nicholson. He may know. He is the microbiologist that discovered that gulf war syndrome was really mycoplasma pneumonia. Try the email on this page: http://www.immed.org/reachus.htm He has some, sort of consipiracy theory videos on the web - don't be put off by them. He knows his mycoplasma. He just doesn't trust that the army (ours or theirs) (he was actually in the Army I think - I know his daughter was). Anyhow, he has some interesting stats on people that had vaccines before going over there and the number of them that came down with mycoplasma (very high - they were give 20 so vaccines in a week or two) versus those that for wahtever reason didn't get thier vaccines...as well as those with active mycoplasma that had kids with autism. Very high percentage. Good luck -send him an email with your questions, and look at the documents on his site for lots more info.

As stated above - IgG positive means you had it. But - that looks to be 3x the range, so significantly high. You need to take the test again in a few weeks to see if the number is going up or down. Its the only way to tell. Doxy is good antibiotic for it, but need so be a fairly high does. I think the acne dose is much lower, and in that case you might want to consider something other than the Doxy - since it has been exposed to low levels of it could be developing resistance to it. How high the number isn't tooo significant -(your question about high enough to cause an autoimmune reaction) - positive is positive. IT will keep climbing higher and higher if the immune system is trying to fight it unsucessfully - so the number also how long you are infected.

I dont' know about your insurance - but I'd do the blood test,otherwise you will be waiting for weeks after IVIG to be able to do it. I'd still do the IVIG (you won't get Ignex test results back before Thrusday anyway) and my LLMD supported out IVIG. My son has mycoplasma - and you can have it without Lyme, but I think it is more likely that you have Lyme if you have mycoplasma because it is a common co-infection. I personally don't think thats because it is carried by the tic (although it is) I think its because Lyme "disables" the immune system - and for some reason makes those with Lyme unable to clear mycoplasma (its a common infection found everywhere - and most people clear it themselves, and certainly with short round of antibitocs ). The Lyme tests all stink - so if they are negative, it unfortunately doesn't really mean you're negative. But if positive - then you know for sure. My son's were equivocal (in my opinion - although LLMD says lean toward positive side due to which bands were positive). But mine was positive...so I'm treating him for Lyme as well. Starting with the mycoP. The IVIG will not cure the myco P...but for us it reversed DS's pandas. Good luck - you are in good hands with DR K and his staff.

Thanks LLM - sending Dr Storch and email right now!

I would treat it anyway. Find the strain, and get him on some antibiotics, and have him re-cultured in a few weeks - don't assume the short course of antibiotics they give you has taken care of it. His tics could be the result of an underlying chronic infection or immune condition. Its may just be giving you a little peep at it with this culture being positive. Have his tics flared with this illness? Maybe you will see some tic improvement on the antibiotics - personally I'd get the antibiotics and start to chart if you see any tic or other symptom changes on the antibiotics. It would take at least a few days to see anything, sometimes a couple weeks, but if you start to journal now, you can compare. Good luck. My daughter had this happen (she is non-pandas, but my son has pandas) - it was 3 days before leaving for a school trip and a camp (in France and England) so both the doc and I didn't want to take any chances with it and got her on the antibiotics. This type of strep does not (at least is not documented to) result in post-infection disorders (like Rheumatic Fever, Dialated Cardiac Miopathy, syndenham chorea, and others)..."regular" strep can - which is why they give antibiotics for it on a regular basis.

Thank you LLM - good advice. I needed to read the advice on taking care - I need to give myself permission to take care of myself. Breathing deeply only helps so much!

Thank you all for all the good advice and support. We had another blow-out this morning over me drinking coffee (he was on the other side of the house, with two sets of doors closed between us and the TV going in the room where he was eating breakfast - stormed into the kitchen, took my coffee and held it up and told me I couldn't drink it..yelled a couple other things too). I called the psychiatrist that gave us diagnosis years ago and asked for some advice, and I am in process of setting up appointment with her (and just me, where I will probably break down and cry because I can't talk about this with anyone - 'cept you guys of course). She is very pandas aware and has treated or diagnosed 30+ pandas kids, but she is too far for us to go on regular basis. I'm debating the intense program in FL (from Northern California). Is that really the only one? Thanks for letting me know the dose on the SSRIs and the lamicil - I will be researching that!

I don't think is the sensitivity thing because its only me -no other noises/ or people swallowing bother him (you should see his buddies scarf down pizza -- that deon's bother him at all!)...it may however has STARTED because noises bothered him at the beginning of pandas - he was much more irritable and sensitive to noises. He says the thought of it is stuck in his head for "like a half an hour". When we tried to do some baby steps - Had him read what to do when your brain gets stuck and I recorded myself swallowing on my phone (5 seconds - no video, audio only). I gave him the challenge of listening to that 5 times (which he thought he was read for - and I was bribing him) he went NUTs after one time. (I'm talking full on tanturm for 40 minutes- swearing, yelling, banging stuff around him room) , and told me the NEXT NIGHT that he thought about it all day long in school and couldn't get it out of his head. This was before he was on Doryx, so he's somwhat better now, but I'm not strong enough to do the therapy with him. I'm actually beginning to worry a little about my own health. The road has been so long to getting him to where he is -I feel like I'm at the end of a marathon and I've hit a wall. Even though the end is in sight I might not be able to make it - I'm gonna need someone to lead on to get to the finish line. You make a good point - control is somehow involved. I've read that kids get parents involved in their rituals - like bed time rituals or other things that they make you do - opening doors for them, saying something specific to them - I'm thinking its more like that. But in my case - it isn't something he's asking me to do - its something he doens't want me to do. If I do it he gets mad at me.

Things have been going pretty well. We have switched to high does Doxy and A-myco after confirming chronic mycoplasma. He's also rotated in some cst-busting Lyme meds No exacerbations - almost all symptoms gone. (One "minor" OCD thing and I'd say some mental inflexibility too). BUT..He still has one persistent OCD thing - he can't stand to hear me swallow or eat. I have a couple questions for you OCD experts out there. One is the nature of his OCD - he has no rituals - he just gets VERY angry at me. I feel like a battered wife on some days. I try to be as quiet as I can, and have set up an environment where he eats in another room, he wears headphones on his computer, I only stay close to him for short periods of time (because then I will have to swallow saliva in my mouth and thats just as bad as food to him - it doesn't matter what it is). I know we probably should not have done this - but we had to just to get through the pandas tough times. So now we have enabled him to avoid this trigger for years (Or I have tried to). What is the most effective therapy for this (I'm thinking exposure therapy - ERP?) Up until he started the Doxy he couldn't 't eat with my husband either, but now he can eat in restaurants with him. So they've been eating out a lot. (without me). He did't do any therapy to acheive this - it just just got better when he swithed to Doxycycline. And I've been waiting for it to happen with me. Its not happening - his issue with me swallowing was one of first symptoms and most consistent through past 3 years of pandas. I think he's going to need some kind of psych-meds as well as therapy to get him through it (oh, and me - I'm going to need something to get ME through it!!)) Any recommendations? I've tried NAC, and I think it helps a little, but not nearly enough to get him through therapy, which I've started to look into. So I'm also looking for advice on combining a sort-of Lyme protocol with SSRIs. If anyone else out there has some stories on what to do this stage in the game I'd love to hear about it. Especially if you were your child's trigger. Does meeting with therapist once per week really help? I would imagine that he will slip back wihtin a day or two unless has "homework" with the exposure (which is ME) and I don't know if I can handle it. Should I look for a more in-depth type of program or more frequent meetings? Thank you!! Any input appreciated.

Things have been going pretty well. We have switched to high does Doxy and A-myco after confirming chronic mycoplasma. He's also rotated in some cst-busting Lyme meds No exacerbations - almost all symptoms gone. (One "minor" OCD thing and I'd say some mental inflexibility too). BUT..He still has one persistent OCD thing - he can't stand to hear me swallow or eat. I have a couple questions for you OCD experts out there. One is the nature of his OCD - he has no rituals - he just gets VERY angry at me. I feel like a battered wife on some days. I try to be as quiet as I can, and have set up an environment where he eats in another room, he wears headphones on his computer, I only stay close to him for short periods of time (because then I will have to swallow saliva in my mouth and thats just as bad as food to him - it doesn't matter what it is). I know we probably should not have done this - but we had to just to get through the pandas tough times. So now we have enabled him to avoid this trigger for years (Or I have tried to). What is the most effective therapy for this (I'm thinking exposure therapy - ERP?) Up until he started the Doxy he couldn't 't eat with my husband either, but now he can eat in restaurants with him. So they've been eating out a lot. (without me). He did't do any therapy to acheive this - it just just got better when he swithed to Doxycycline. And I've been waiting for it to happen with me. Its not happening - his issue with me swallowing was one of first symptoms and most consistent through past 3 years of pandas. I think he's going to need some kind of psych-meds as well as therapy to get him through it (oh, and me - I'm going to need something to get ME through it!!)) Any recommendations? I've tried NAC, and I think it helps a little, but not nearly enough to get him through therapy, which I've started to look into. So I'm also looking for advice on combining a sort-of Lyme protocol with SSRIs. If anyone else out there has some stories on what to do this stage in the game I'd love to hear about it. Especially if you were your child's trigger. Does meeting with therapist once per week really help? I would imagine that he will slip back wihtin a day or two unless has "homework" with the exposure (which is ME) and I don't know if I can handle it. Should I look for a more in-depth type of program or more frequent meetings? Thank you!! Any input appreciated.

someday they will figure out that you can't be a subset of something that does not include your definition in the first place. PANDAS - can be tics only, PANS cannot. So, how can it be a subset?

Thanks for posting PowPow - this is a GREAT summary. Its has a lot of information. Although it does not go into the immune response stuff in depth - its like an outline of what I WAS expecting the White Paper to be - a guide to helping your kids until the researchers decide what the party line will be. I wish it elevated tics a little more, but for the IOCDF site - its perfect. Great to print and share with teachers, pediatricians- anybody who needs to know more about the different symptom, treatments and triggers of pandas.

Our LLMD says that anyone with chronic lyme will need a form of cyst busting antibitocs in order to get fully better. Not that the Doxy won't work, just that it will need to be augmented at some point with other antibiotics that can break up the cysts - usually these are "pulsed" a few weeks on and a few off.

Huh. I did not know that. I would have preferred my daughter to start on Doxy.

I agree with all above - better safe than sorry. Mild, transient tics are very common after strep - but if your child is getting frequent strep, it is likely she is not clearing it, and that something is interferring with her bodies ability to clear it. So in addtition to above recommendations on followup testing and hyper vigilance, I'd ask for some immune testing and CDC and vit D levels. And maybe start her on some vit D if that is in low-ish range. Most probably - it is nothing. But you also need to ask yourself if she has any other ODD behaviors. Things that are a little "off" - use your mommy - gut -most kids will try to hide these things. Even adversion to certain foods, colors, things, words, or noises. Let me give you an example:our 10 year old started with bickering with his sister at the table over manners - talking with food in mouth, any slurrping, just being "annoyed" during dinner - which was weird. Finally, just to get some peace at dinner, I had him eat at the island facing away from us, stated playing music...finially just put him in a different room during dinner. Its a type of OCD "intrusive thoughts" he couldn't get the though of me (a little latter if became exclusively focused on me) out of his head. He didn't tell us about that for months because he new it was "weird". AND to make it even harder - they may be things that they only do when they are alone or in a specific cercumstance that you are unable to observe. At one point my son had a compulsion to look into the sun. He only did it a baseball - and if you were watching the game, and not just him then you would never know he was doing it because he did it very fast and only when they were between plays. I don't know how long he did it before he told me about it - which he only did because he was petrified he would go blind. Here is a more in depth descrition of the other things to look for: Anxiety: The anxiety may be manifest as de novo or suddenly exacerbated separation anxiety, generalized anxiety, irrational fears or worries, or a specific phobia. Early in the course of illness, the child may appear “terror stricken”, hyper-alert and excessively vigilant, as if confronted by a constant threat of imminent danger. Over the course of a several days to a few weeks, the apparent panic may subside to a state of generalized anxiety, which might present with repeated requests for reassurance that the child didn’t do something wrong or that he’s safe. Children with separation anxiety may seek physical proximity, as well as reassurance about their safety. As the name implies, separation fears typically are focused on the health and safety of one or more loved ones, but in rare cases, they center on concerns about being parted from an inanimate object, such as a piece of furniture or a room in their home. The separation anxiety may become so severe that the child will insist on sleeping between his parents or staying within reach of his mother, even when she uses the restroom. Emotional lability and depression : Emotionally labile children experience sudden and unexpected changes in mood states, often shifting from laughter to tears without obvious precipitant. The children may complain that they have an inner sense of restlessness and agitation, which is similarly unprecipitated and inexplicable. Some children may experience the abrupt onset of a clinical depression, which can become severe enough to be accompanied by suicidal ideation. Self-injurious behaviors and suicidal ideation are also common and are of particular concern among children with concomitant impulsivity and behavioral regression, as they may cause themselves serious injury. Aggression, irritability and oppositional behaviors: These symptoms often top the list of parental concerns because they are so disruptive. The irritability and oppositional behaviors are present throughout the day and the aggression occurs without provocation or precipitant. Most notable is the striking contrast between these new behaviors and the child’s usual state of being “sweet-tempered and well-behaved” or “easy-going and well-liked”. Outbursts occurring in response to interruption of an obsessional thought or compulsive ritual should not be counted as a manifestation of this category, as they are an expected occurrence among pediatric patients with severe OCD. Behavioral (developmental) regression: The symptoms of developmental regression include an abrupt increase in temper tantrums, loss of age-appropriate language (sometimes to the point of the child using “baby talk”), and other behaviors inappropriate to the child’s chronological age and previous stage of development. The developmental regression may be most apparent in the child’s school assignments or artwork, as shown in Figure 2. Sudden deterioration in school performance or learning abilities: A number of factors may contribute to the child’s academic difficulties, including among others, a shortened attention span, difficulties with concentration or memorization, specific losses of math skills or visuospatial skills, and other disturbances of cognition or executive functioning. As with the other categories, the academic difficulties must represent a distinct change from previous levels of functioning that occurs at the time of the onset of OCD symptoms. Thus, chronic manifestations of attention deficit hyperactivity disorder (ADHD) or a learning disability are not counted here, nor are the visuospatial and fine motor skill deficits that are commonplace in chronic tic disorders and classical childhood-onset OCD [49,50]. Sensory and motor abnormalities: The sensory abnormalities may include a sudden increase in sensitivity to light, noises, smells, tastes or textures of foods or items of clothing; or conversely, sensory seeking behaviors, such as needing to touch or feel particular objects or textures. Visual hallucinations may also occur and might include frightening images and perceptions that objects are floating or that they’re larger or smaller than actual size. The visual hallucinations are usually brief and only mildly disturbing, but in severe cases, may be quite frightening and persistent, lasting for several hours or longer. Motor abnormalities occurring in PANS include a variety of signs and symptoms, such as an abrupt deterioration of the child’s handwriting (dysgraphia), clumsiness, motor hyperactivity, tics and choreiform movements. Dysgraphia is a particularly useful diagnostic feature, as handwriting samples obtained during the child’s acute illness can be compared against those produced during an asymptomatic period to document the motor changes, (see Figure 3) or even to identify precipitating infections by comparing longitudinally collected handwriting samples with infections documented in the child’s medical record [51]. Choreiform movements must be distinguished from the choreatic movements of Sydenham chorea. While chorea is characterized by jerky or writhing, arrhythmic involuntary movements of the extremities, trunk and facial muscles, choreiform movements are described as “fine, piano-playing movements of the fingers” that are present only when the child maintains stressed postures such as a Romberg stance [52]. Somatic signs and symptoms: Sleep problems and disturbances of urination and micturation are among the most common physical manifestations of PANS. The sleep disturbances may include not only the new onset of terrifying nightmares and night terrors, but also difficulties falling asleep, staying asleep or waking up too early (early, middle or terminal insomnia). To avoid double-counting sleep disturbances, it is important to ensure that they’re not a manifestation of an anxiety disorder. Urinary symptoms are often the presenting complaint for children with PANDAS. A pediatric clinic-based case series reported that 7 of 12 PANDAS patients initially presented with urinary symptoms, including the new onset of night-time bedwetting (secondary enuresis), daytime urinary frequency, and an urgency to void, without evidence of urinary tract infection [53]. Subsequent experience has confirmed that urinary symptoms occur frequently during recurrences, as well as at the onset of symptoms. The symptoms are occasionally related to obsessional concerns with toileting or contamination fears, but for most children, no cognitive or emotional explanation can be found. Best of luck - Dr K is exceptional and will be sure to alay you fears , or to get you the proper pandas treatment immediately. You are in good hands.

Disappointed. Thats my reaction after one quick read. Here's my summary - If your child has OCD, get some SSRIs and behavioral therapy...you may also want to check for strep throat and depending on the child's examination, other infectious triggers might also be considered and appropriate laboratory studies obtained, and treated with antibiotics. If you are primariliy a ticcer - you have Tourettes. There you go in a nutshell. All this does is create a new definition. A new grouping - she refers to pandas as a sub group but - by her own defintion - pandas can include Tics only, and PANs cannot (therefore cannot be a subgroup!). Also, pandas does not require that you have at least OCD + two other symptoms. So, - it is a SEPARATE group, but there is overlap.. (so its confusing if you are trying to use the criteria to diagnose). And, it only further supports what the NIMH website states as treatment - SSRIs and behavioral therapies. I don't recall even seeing IVIG mentioned! And antibiotics not recommended. She also removed "episodic course" which, from what I've read and heard of antecdotaly is present in 70+ percent of the cases - they aren't even noted in the new definition. Why do they feel the need to be so black and white? You don't need strep anymore (good) but she doesn't say to throughly check for all types of strep as well as mycoP and lyme, or immune problems...(bad) Description of the other symptoms was good. 1. Anxiety 2. Emotional lability and/or depression 3. Irritability, aggression and/or severely oppositional behaviors 4. Behavioral (developmental) regression 5. Deterioration in school performance 6. Sensory or motor abnormalities 7. Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency And - it calls out anorexia, but nothing else. To me restricted eating is a form of OCD, but so are intrusive thoughts, and hair pulling and any number of other atypical OCD behaviors. Its called out, which may help doctors and parents to ask who probably don't know what all forms of OCD are - but it misses all the other forms that aren't well know stereotypical behaviors. I would rather it refer back to the Children’s Yale-Brown Obsessive-Compulsive Scale at that point (not in summary - where she says "it might be useful") because most parents and pediatricians have NO IDEA of what kinds of questions to ask or behaviors to note to determine if a child has OCD - esspeically since they like to hide it (which she does mention in the summary). And the criteria that "symptoms not better explained by ...or Tourettes" means ever ticcer WILL get a dx of tourettes - since the tourettes criteria include comorbidity of OCD, ADHD...etc. So, my child fits in both definitions - and therefore is "better" explained by Tourettes (and would have been placed there - esspecailly at the beginning when I didn't understand what he was doing WAS OCD) . This should absolutely be the OPPOSITE you get the dx of Tourettes - if your symptoms not better explained by PANDAS. I guess I envisioned a real diagnostic tool, with realistic treatment recommendations - something for doctors and parents to use until "further work" and "better studies" have been done. This isn't it. The new def. is broader in some ways - which may end up hurting them (no need for any infection strep or other, or autoimmune issues) - so all OCD that comes on suddenly is included, and that may end up biting her in in the you-know-what as much as tics when it comes to other reasearchers trying to replicate studies or doing antibiotic trials or IVIG. Again, antecdotally, most of the kids I hear about here have ongoing chronic infection or immune issues, and will remain sick until those are addressed (and strep is one of them). I was hoping for so much more from a "White Paper". This paper puts up a fence to keep the Tourettes critics out of her backyard, and I can see that she might want to do this for her own research criteria, but to do so for the entire definition of the group, seems to be leaving a large number of kids on the wrong side of that fence...a decision that I feel will be regretted in the long term.

That is a great article summary linked to above. I think Swedo is using a systematic approach - OCD and strep first. That is how the study she is doing right now is written up. OCD is the primary symptom, and has to be very tightly linked to strep. So, there aren't any kids in it that are only ticcers. Not to say none tic, but there are OCD only kids, and OCD and tics as a secondary symptom. So, unfortunately for kids that primarily ticcers (and those with something other than strep like myco or lyme) - this study will not help them. Her fist study from 1998 - it was the opposite. But, she has stated that she is working on Lyme study already. It will be interesting if those that do antibitocs andit inflamatory and maybe IVIG get better. I suppose it could be that those kids may have "a better placebo in Dr T" than the dent kids getting psych meds. Sorry for he sarcasm - but I can't believe that Fox news guy suggested that. Dr T will have a placebo effect on the kids because he cares.

The Tic -only thing, and the fact that it is all girls, makes it look like something else to me too - not clear cut pandas - but obviously could still be immune related or infection related. I'm sure that Dr T did some investigation where the other symptoms are concerned. And, from everything I've read tics are more common in pandas boys, not girls, so even weirder. I just hate these narrow definitions. They need to look at the girls immune systems and forget the stupid definitions. If all of the girls have had either strep or mycoplasma, I find that highly unlikely that those two things are not related to what is going on. But, whatever those titers are need to be compared to what the "normal" is - preferrably from another area, not the same student body. Could be a certain strain of strep went through that student body and these were the girls that ended up with the [ost-infectious disorder from it (and possibly because of more exposures too). In addition - while titers are very common among grade school population - and I've read those studies - I don't think that true of high school population. I think I've seen that somewhere recently, but don't reacall where or if it was strep or mycoP I was reading about. Does anyone recall seeing something about titers decreasing from ages 12-18 (a chart maybe?). The whole "who owns tics" debate is hurting these kids. That and the narrow defintions. Why can't they say - in "2/3 of the cases we see both tics and OCD". When your kids is flailing violently about all day, it makes the other things minimal. These girs may have other symtoms - teen girls don't normally come on national TV and admit to doing weird things in secret that they know are "wrong". They hide it from everyone. Swedos original work - I think all or almost all had tics, and then 2/3 also had OCD. I know a bunch only had tics. And many responded to treatment, but not all of them (2 ? who did not improve with IVIG). 2 is not enough of a group. And the ones in the PEX group that were tics only did improve from what I recall. Swedo clearly trying to move away from the tic controversy. she's backing down to "bullying" Here is what she said in Texas in October: ________________________________________ DRAFT Criteria for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) I. Abrupt, dramatic onset or recurrence of obsessive-compulsive disorder (Eating disorders may be an alternate manifestation of OCD and are counted here) II. Concurrent presence of additional neuropsychiatric symptoms, with similarly acute onset, from at least two of the following seven categories (see text for full description): 1. Anxiety 2. Sensory or motor abnormalities 3. Behavioral (developmental) regression 4. Deterioration in school performance 5. Emotional lability and/or depression 6. Urinary symptoms 7. Sleep disturbances III. Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others. Note: The diagnostic work-up for PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests. ______________________________ ( Isn't it wrong that Tourette disorder is a "better explaination" than pans or pandas!!? So backwards - it it isn't pans or pandas and the kids isn't helped by IVIG and antibirotcs - THEN its tourettes.

Stress is normal, look at ANYONEs life and you can find something considered stressful for them (or for you to project onto them). What is interesting about stress is it opens up the BBB...and if you have certain infections the antibodies being made at that time can then get accross the BBB into the brain and attack it. And the cycle begins..(more stress, more opening, more antibody positive re-inforcement so the body creates more of those and the when the brain is attacked it experiences fear/flight/fight - making more stresss..opeing the BBB...) Here's another theory on SC - strep strains change - RF and SC used to be common here - likely because the strains of strep were different then here. These strains still common in other areas of the world however.

If your child's mycoP is rising...you HAVE a current infection, a very serious one that is more difficult to eradicate than strep. Clindamycin and doxycycline, and minocycline are good against mycoP - which is why your child probably did well with the Clindamycin. I'm assuming it is outside the normal range and rising. An IgG that is rising is a more positive indication than even an IgM. If you call this to your docs attention, I don't see how they wouldn't treat it, and if they won't - find a doctor that knows what he/she is doing! Mycoplasma is a known cause of pandas, and is cited in alot of the materials *(not just strep). If your current doctor is not taking a rising myco P titer seriously enough to prescribe long term antibiotics, I suggest you find an immunologist, or and LLMD or infectious disease specialist. Mycoplasma is very commonly found in people with Lyme. Is called a co-infection, but it is debated weather the myco comes from the tic, or because the person's immune system cannot fight off the mycoP due to the lyme messing up the kids immune system. (mycoP is common and a heathy person should be able to clear it on their own). I've found that the Lyme docs know their anitbiotics and the immune system very well. Ours is using mixutre of herbs and doxy to combat my son't rising mycop titers - my son's IgG was at 2450, and all the doctors (even Dr K and a stanford immunologist) said that if the IGM is neg, then he most like does not have it he just had a "very robust response" when he did have it and his antiboides stayed high. The only doctor that said that it meant anything was the LLMD. After my own research I decided to have it tested again several months later (and several months after 2nd IVIG) his mycoP was then at 2950. Not everybodies titers are going to be this high. But a rising titer is a rising titer. By the way - my son was on 500mg Azithromycin almost the entire time. At first he did well on the azith but he had pitands, and with every cold he would exacerbate and his baseline would be worse . I really wish we had targeted this from the start. But we had no typical symptoms of mycoplasma. Just like kids with chronic strep or strep carriers, you wouldn't know it until you tested for it. I wish the everyone would test for this along with strep at the onset. Seems sily that they don't. It isn't like Lyme testing (expensive) and if your child has pandas, its one of the know causes - why don't the docs run it with the strep titers - I dunno.

http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx?e_cid=20120205_SNL_Art_1