norcalmom

yes, it could be a tic. when my son started ticing he nver did it at school, he was occassionally doing it at home - asked the teachers and they said no, I think they thought I was paranoid. He told us he was getting his hair out of his eyes. We cut his hair. Then one day I saw him at recess at school. It was out of control. And at baseball, crazy. So I guess what I'm saying is yes - they can start off slow (mild) and they can be situational. Some kids go crazy whent hey get home from school. they can surpress it for a while, but then need to get it out. I doubt a 2 1/2 year old would have that filter though. (my son was 10 when started). He has milder tics now, and sometimes he only does it a few times in the morning. Sometimes he has none. He usually gets them just before getting a virus. I'd say 3-7 days before, like he is exposed and fighting the virus, and once the virus takes hold the tic dissappears. First couple times were major exacerbations, so alot more than tics involved and I wasn't tracking minor colds at the time. I think he got those after illnesses, and they lasted for months. That was before we got him on abx. Your child is really little, so hard to tell, but you will know if it transitions from mild. In interum, I'd check for strep. Does your child have a pnadas diagnosis already? 20% of all little kids have a mild tic of some kind at any given point. So I wouldn't worry about it unless already pandas and adding new symptom, or tic becomes severe.

Me too. There is a thread going on IVIG right now at top of board that considers same question - boy age 11, "mild" case. I am very interested in what happens there, and with your son. Very similar to my ds situation. Things are OK (or relative to what they were they are OK) but alot of what we consider "OK" is what you get used to. One person's 80% is another's "he does WHAT?!" There is suppossed to be a study out shortly that follows 60 or so pandas kids over 8 years - Swedo I'm pretty sure. The study ends this month. I hope they don't take forever to publish. I'm really interested in adolecence - what % of kids pandas totally disappears in, and is that # affected by IVIG or antibiotics. My docotor - phychiatrist that diagnosed ds - has over 20pandas kids she has treated. She says will probably resolve itself. She is OCD specialist and professor at Stanford (although not nearly as expert on pandas I would like). She had helped some pateints get IVIG and is totally willing to help us get it done too if thats what we want to do. We have to weigh that against Dr K's warning of "if untreated may cause permament damage". Plese keep us updated!

Maybe those family memebrs with TS-I'm assuming they are adults now- really had pandas as kids, or untreated strep. How could you know? The diagnosis hasn't bee around for long, and even now its hard to find a doctor that knows much about pandas. The pandas theory is that the kid needs to be genetically predisposed. Like with Rheumatical Fever. So makes sense it runs in families. Tics are just a symptom..I feel that TS diagnosis is like saying "you are ticcing and we don't know why, and there is very little we can do" . I would want to rule out every possible known casue before excepting that. There are probably a lot of pandas kids that have been given a TS diagnosis because drs don't know anything about pandas. And historically that was the only diagnosis availible. (after ruling out known tic causing illnesses). Also, Buster's flow chart is excellent, and includes tyes of tests and types of doctors. Wish I had that info when we were at the beginning! Turns out we followed most of it, but had several time consuming and expensive detours. http://www.latitudes.org/forums/index.php?showtopic=6688 Are there any common pandas symptoms that TS kids don't get? bed wetting? night disturbances? daytime urinary frequency? I know that there is high percentage of comorbid OCD and ADD. Anyone out there know that much about TS? Good luck and please keep us updated.

Maybe he is having separtion anxiety? my only thought is maybe you can ease him back in with just a couple hours. Or you could go with him ot th library time or somehting else (gym, art, music?) and be nearby. Or if there is a feild trip or class party you can go to that, to start to get him back into his routine. We only have 3 1/2 weeks left, I dunno about your schoold district, but I don't hitnk they are missing too much academically at this point. I found out from our teacher this year that no child has to take the standardized tests(we are in CA), he personally has exempted his children a couple times himself. I tried to talk our son out of doing ithem this year, because he was in minor exacerbation and not only did I not want to add stress, I thought there would be a possibility that his score (especially in math) would be low because of the exacerbation. He really wanted ot take it beause he doesn't like to be singled out (and we've been taking him out of class for Drs appointments so much - he hates that). so we let him. They use several differnt math tests from 5th grade to place the kids in the middle school- it gets broken into 3 groups going into 6th grade. They also use teacher input. Our teacher thought that his input and the end of year middle school placement test were much better reflection of kids ability and knowledge....especially my kid since we think he is gifted in math, but will occassionally bomb tests. We are in process of trying to figure this out. I suspect pandas related. Food for thought for next years standardized test.

Do you think burst could have lowered immunity and brought on sinus infection? Are you considering IVIG? My son is 11, and I am in holding pattern. I almost wish there was another clear exacerbation so I could get the cunningham test done and just do the IVIG... It just hasn't gotten nearly as bad on antibiotics, he often has minor ticking/compulsions/irritability and all of them wax just before getting sick (and he gets the other symptoms like insomnia, bedwetting, obsessions when that happens) its like he is just on the edge all the time. I am thinking of doing the steroid burst to try to heal him further, but seems like mixed reviews on the steroids -I've read a number of posts where kids are coming down with infections after they have a little remission, and if your child has pitand (which mine does) I am fearful of sending him backward. Maybe your son was really heathly (immunity wise) when he got steroids for poinson ivy and thats why it worked better.

Dear Wornoutmom - Does he have low IGG? Have you done any steroid bursts - how did that go? kerry

Last Tuesday/Wednesday I noticed an up-tic (pun intended) in my son's symptoms. He has one mild infrequent tic and irritability as ongoing symptoms, but on Tuesday he added a new tic and both of the tics he was doing frequently (but not constantly like when in exacerbation) he also had insomnia on Wednesday night - up until after mid night, and tough time falling asleep on Thursday. He woke Friday morning and said he didn't feel well, no fever, he said his throat hurt a little bit(he has never tested positive for strep throat, I don't think it was strep) I kept him out of school mostly because of the lack of sleep. He behaved perfectly fine(except tics) and as soon as he got a couple more hours of sleep he said his throat didn't hurt anymore and wanted to play baseball in the yard. Still ticcing more than usual. He woke at 4:00am vomiting. By Saturday his second tic had gone away. Today only one infrequent tic. Mood great, no sore throat, appetite good, slept fine. This is the fourth time I have seen this happen. I know that I've seen posts about kids who react to strep before a positive throat culture, but are your kids reacting BEFORE they get VIRUSES? It seems like the last few times he's had increased symptoms it was within a few days of getting a cough or cold. And, his pandas symptoms seem to go away before the cough or cold is finished. This is unlike the first two times - when he had major exacerbations - those followed being sick, and they were bad. They didn't last days, but weeks, and tics were constant, violent, and he had host of symptoms along with that. It makes me wonder about the steroid bursts too. I'm afraid to do it, because the first time I tried one I did it when I saw an increase in his pandas symptoms(this was early on, and I thought he was going into a full exacerbation) . Day 3 of the burst it was apparent he was getting a cold so I stopped the steroids. In retrospect, I think he was symptomatic because he was fighting the virus and the steroids made the virus worse, if not the pandas stuff (we didn't see any change in 3 days). He has low IGG, but dr. said it is considered inside normal for some of the published ranges but not others. It seems like it could be a catch-22. The steroids lower his immunity, if there is a virus he is exposed to he'll probably get it, and the virus will cause and increase in pandas stuff. I want to try another steroid burst in the summer when he is healthy and virus season is over, but I'm wondering if maybe kids with low IGG shouldn't do steroid bursts? Alsow wondering if low IGG kids are canaries for viruses?

I'm thinking why risk it if there are other brands out there that don't have any strep strands in them? What are the yogurt brands that don't have any strep in them? Anyone know (or have some in the fridge to check?)I just rchecked probiotics we have on hand (I like to mix up the brands so he ges as many different strands as possible) Lifeway Organic Kefir bottle - it has two that start with "s."... Yum Yum Dophilis" - these are chewable tabs, and they don not have any" s." strands Attune Probaotic Granoloa Bars - no "s." strands We also eat alot of yoplait yogurt...but I don't happend to have any in fridge right now.

I agree with bubbasmom, but also - go for a walk. Take a hike tomorrow with a friend. The email will wait. Once you start down that rat hole its easy to get lost and forget to come up for air. I had a hard time functioning when this started - I felt that any time I spent doing anything else was just wrong. I coulnd't enjoy it. I felt guilty. And, I felt as if, if I thought enough about this, and researched enough I could make him better. AND/OR if I didn't spend every waking moment researching, talking, watching, ds's every move or twitch, recording every thing he did-ate-was exposed to - to see if I could find a corelation, then he would get worse. Know I know that isn't the case. Take the weekend off, you deserve it. I have a big fear that the cam II test will come back negative. I have the kit to do it, I decided to wait to see if there is another exacerbation...because at this point we aren't bad enough to do IVIG. And bcause the levels are lower if you aren't in exacerbation (this per Kathy Alvarez). I assume you did the test in deciding if you would do IVIG/pex? At least now you have some confirmation about the path you are on.

GREAT JOB MOM! What a mature and giving induvidual you raised (in addition to getting her through pandas).

Thank you so much for reaching out to us. Your story is exactly what we need. Not just how to manage the day to day, but how you made it to the other side. The marathon. I think we are all so scared our children won't come out. There is scant information on adults that have come through it. There is an 8 year study following 60 or so kids with pandas that should come out later this year, but we need help now. Did you do any IVIG or steroid bursts? My son is very irritatble (much of the time now, even though we have had huge improvements with the antibiotics). One of his triggers seems to be me. Not sure if this is because I am the only safe person for him ot let loose on, or if I sould just stay away from him. Thank you again.

YES - for some reason when a kid starts to itc it sets off alarm bells. With the behavioral and mood stuff, it is easier to tell yourself its a phase, or they are quirky, or our dog died three months ago so maybe thats why he is obsessing about death, or maybe this is just his personality...I feel lucky that my son had a tic, I think he would have gone undiagnosed (or mor elikely misdiagnosed) for a lot longer with out it.

I hate the way they teach elementary school math now. The focus is on reasoning, weather or not they are reasoning correctly doesn't really matter. It is also biased toward kids that are good at writting. My daughter, although very bright, is not gifted in math. She is however, quite a writer. She could get the answer wrong, fill half the page with her "reasoning" and get 9.5/10. My son, will do the problem in his head, write the final answer down, and get half (or less) credit..then be chastised by teacher (and me) for no "showing your work" (or even better, "explain your answer") . She feels great - but hasn't learned a thing, and he feels bad, but has mastered the material. I thought of another old example of his brain working differently. He didn't like to draw much as a kid and I remember when her was 4 or 5 he made a picture of a car, and I thought to myself "wow, this kid really cannot draw - I can't make out a car in this at all" then he showed me where everything was. He drew the picture in plan view - from above, like looking into a convertible. Just a little thing, but not how most kids (or even adults) would think to draw a car. I'll let you know how I feel about the value of the eval when we get through it. Food for thought -Einstein had some nickname (cow?hyenna? -can't remember) because he would randomly yell out that animal sound animal sound when he was in grade school (tic?). He also had kleptomania. Wonder what other OCD or tics he had.

Dr K's site says that the kids have very early language development, and the mother has math/science skills. Also says the mom may be OCD herself. While I don't have ANY OCD, I was a math and computer science major, and my pandas son said his first word at 4 months. I felt like I was reading my horoscope on Dr K's site. At 11 months, he was mocking me in short sentences, and voices. At 23 months I was coloring with him and my daughter, he was going through a "potty mouth" phase. My daughter made a picture that was all one color, and I said "hey, that one's monochromatic. mono means one and chromo means color"- my son was making race car tracks (and noises)with his crayons , just scribbling (he isn't even two), not listening to us - or so I thought. We talk and color for 5-10 more minutes. At the end he comes over with his paper to me. "Mommy, I made a special picture for you" "Awww honey, thank you, come show me"..."Here, (laughing) it's ca-ca chromatic". He thinks differently. Does incredible math in his head-frustrating because the kids get more credit for "show your work" section, which he consistently forgets to fill in. Gets concepts quickly, but doesn't pay attention enough now that it is getting harder(5th grade), he is missing too much to figure it out on his own. And if is really easy, he panics and over thinks it..."they can't possibly be asking for THAT...must be something I don't know.." Most of it he rushes and makes carless errors. He doesn’t really care to impress the teachers or prove what he can do (or so it appears).He goes through phases of interests quickly. Gets to his level of what he wants to know, and, on to something else. Extremely socially aware. His teachers have said "we would be astounded if he isn't incredibly gifted, but SOMETHING is getting in the way of his learning". "ADHD?" I ask. "We don't think so, not sure what it is". We are in the middle of an assessment with a psychologist that knows both giftedness and learning disabilities. Many kids are both -twice exceptional it’s called. or 2(e). Its probably the pandas, but we might be able to give him some tools to help with conventional methods. I'd be hard pressed to medicate for ADD though, I feel the pandas is messing with his brain chemistry enough. I wonder how many pandas kids also have ADD? And what came first? Are they bright because they have pandas ( their brains are working differently), or is their intelligence a risk factor? I think we assume the later, but who knows for sure since most of us in retrospect think some of those "quirky" behaviors our kids have had forever were subclinical symptoms?

Thanks - yes - it is always helpful when I dont' have to spend lots of money searching for the right supplement, or one my son will take that is dosed properly! So sorry to hear about your daughters gut issues. I was concerned about that with my son, he'd had some diarrhea including some bright green(I'm talking flouecent - it was bizarre) diarrhea, which is what sent me to the gastroenterologist. It was a surprise his IGG came back low, leading us to the next step. I also had him on a GF diet for a while trying to rule out celiacs, that was tough. I have to say I felt better after 4 weeks with no gluten (my son didn't really change).

Thanks for that info Amber. And for telling me about your eyes! I am definatley going to up his Vit D now. Are you supplementing with D3 only?

we just requested our test. I asked the same questions - reply was "Usually during an exacerbation the scores a tad hier, but as long as there has not been any steroidal treatments, we should be ok....." they know we are on prophylactic antibiotics too. Maybe the Azithroycin has anti-inflamatory properties, so that may be helping close the BBB giving our kids some releif and as well clearing the strep, but the blood still has what they are measuring?

Hang in there. Didn't you say that your immuno (or his brother) ordered the higher dose IVIG? How long do you have to wait to do it? For us the advil is at least as effective as upping the dose on our Azithromycin. Fish oil is also anti inflamatory, so can't hurt to give a little of that too. there are a number of studies on effectiveness of fishoil (high DHA ratio fishoil) on treating adhd. We use the Carlson liquid lemon flavor. got to keep it cold - I put a "floater" on top of lemonade (1tsp). better than taking huge pills - you need too many of them. Can't taste fish at all, but makes it oily. Its better in strawberry smoothy. This probably won't do anything, but might make you feel better. I know that feeling of needing to DO something to fixit. We all do. Hang in there and keep us posted.

I am going to get cultured again - the rapid strep culture was for me - to rule out my being a carrier. The line was very faint, but doc said that is usually the case in carriers. I did start on the antibiotics, but when hearing the culture came back negative, the doc said the culture is far more reliable, so stopped. The rapid strep does have a false positive of 2% (depending on what rapid test used and what site you check). There are a couple other things that live in throats of certain individuals that react with rapid strep test – but don’t grow in culture-because they aren’t strep. Vitamin D levels were slightly low at 25ng/mL - test results say that suggests insufficiency(between 20 and 30), but not deficiency (less than 20). He now takes a multi with vit D, didn't before. That’s a really good catch – didn’t think of that. I may add the D3 drops to see if makes a difference. Seems like this is THE vitamin right now, and we are all low on it…I came up slightly low on my annual exam. That is interesting about kids with developmental disabilities being drawn to the sun. I didn’t know that. He also flaps his hands sometimes– he does it A LOT when he is in exacerbation, constant if not engaged in an activity. I know that is common with autistic kids, he’s not. Said his first words before 6 months, had short sentences at 12 months. Very social, picky about who he hangs out with, but generally social even in exacerbations. We are currently also in the middle of having him evaluated for giftedness and any other disabilities (twice exceptional). Maybe it’s just the pandas, but if this is how his brain is working right now, we need to do whatever we can to make him more successful in school, so we decided to have him evaluated before middle school. I’ve been putting that off for years. I didn’t want to put a number or label or a number on him, and I wasn’t’ going to medicate him for mild ADD so I didn’t see the point. I was preparing to do it last winter, after his 4th grade teach said to me “I’d be astounded if he was not very gifted, but I feel there is still something getting in the way of his learning, but I don't know what it is”. I was looking for the right person to evaluate him, when all the pandas stuff broke loose. He’s always exhibited signs of ADD as well as giftedness (many of them are the same signs!) but he seems to walk the line with the ADD – pays attention just enough to get by. Disrupts the class just enough to entertain himself but not get sent to the principal’s office. In retrospect it seems like every fall the teachers rave about him and how bright he is, and then come the winter conference we get feedback that he isn’t focused (but they don’t think its ADD, or ADHD) , talks to others, blurts out answers (when paying attention).Last year we thought the fact that he was frequently asking to go to the bathroom as part of that behavior, until I read it was a pandas symptom. He rushes through tests – missing lots of details, forgets to turn in work, doesn’t thoroughly read instructions…etc. Handwriting horrible, but it’s always been pretty bad. One thing I did notice with his handwriting last year was that it looked like he’d often go over a letter that he already wrote correctly underneath. He still does this a little bit – maybe a couple times in a sentence, where as last spring it was probably two letters per word. Each year we’d think he’s just going through a phase, or that he was reacting because his dad had been traveling so much and his routine/emotional state was disturbed because of that. Maybe he was getting exposed to strep and reacting, and it was getting worse every year. That’s what I think now. I’m glad he got a tic – it was such a physical in the face thing you couldn’t make a excuse for, and it made me realize that the mood, bedwetting, and phobias were happening at the same time. I’m convinced that if it happened again it would fit the “sudden, severe, onset” characterization. He’s had a couple other phobias in the past– out of the blue in 3rd grade – water – he’s swim in it but didn’t want go on a trip where the car would go over a bridge, or plane over water, or god forbid a boat. And dogs. But there are sooo many kids afraid of dogs, and his fear went away when we got a dog. The water thing was a little weird, but it wasn’t too the point where we couldn’t get him in the car or plane, just quirky and annoying. I don’t give this much credence, but Dr K’s site has that “phenotype” of pandas kids – very early language development, a mother who is mathematical or computer savvy, and mother may exhibits OCD herself. I don’t have an “OCD bone” in my body, but I did major in computer science and mathematics. So I’m reading all about the pandas symptoms and seeing my son, and then I read about the language development and mother’s spatial skills. What are the chances of that? I’m thinking it’s a little self selecting – because most parents that find Dr K (especially a few years ago) must be bright and technically competent, and could possibly be that we in Silicon Valley area had a bad strain of strep so there is a large group of us computer geek moms. Still spooky. Haven't taken him to opthamologist yet. Its on the list. He's really sick of doctors. I don't think it is hurting his eyes right now , it is such a breif glimpse. I've done it myself to check it out - it happens the most at sunset -this is when baseball games are played - when he is in the field and sun is in line of sight. I'm jsut afraid someday he'll do it longer, or start another compulsion like cutting himself.

I had to write this up to submit for cunningham's test, so thought I would use it to post as my son's story. He is currently 11, this all started jsut before his 10th bday. Family history – no known RF. Rheumatoid arthritis on mothers side – maternal grandmother, and cousin on mothers side. cousin has acute pediatric onset RA. Other family history – immune related – mother (me) lichen planus. Austin – GERD/Reflux for approx first year. Pneumonia at age 6 Mother: my rapid strep was positive, but culture negative. I may do again. Father and sibling (sister 13 years) negative-These taken in October. ASO titer was normal and that the Anti-DNase B titer was 60 taken in September. Onset: Feb/ March 2009 – first symptoms, extreme irritability. Disgust at hearing parents chew, swallow (even saliva) , eat. Within 2-4 weeks, nightmares, bed wetting, obsession with death, sever tic, daytime frequent urination. We didn't know about the urination - it wasn't every 5 minutes like some people we've read about, but it was bad enought the teacher started to tell him he needed to wait to go because he ws disturbing the class too often asking ot be excused. We just thought that was some of his typical antics at the time. Took to doctor for tic (did realize other behaviors were symptoms of anything). Tic is severe – head tic, and facial grimace. Head tic causing pain. He was not ticcing during class, but would go crazy outside, also at home he would have periods of it, mainly when going form one activitiy to another or walking around. Once engaged it would stop. Basesball season was painful to watch, he did it constantly - until the split second he was about to hit, pitch or field the ball, I though he was going to get hurt. Took to neurologist when tic was not getting better he said probably transient tic related to stress. (no known stress factors in his life however). Also, had “growing pains” in feet (possibly knees as well) around his time. By mid July almost all symptoms were gone, this happended slowly, but I thought the docs were right. Tansient tic. Eating together issue and irritability persisted, but better. No ticcing – at the time, that was our biggest concern. In mid August, tic returns, along with sleeping issues-can’t fall asleep, waking up due to night mares, as well as waking earlier than usual, obsession with death, bed wetting, and separation anxiety. This is following week long “croupy” cough. Throat culture negative. All symptoms appear within several days of each other. Early September – add in new symptoms – looking directly into the sun (in a tic-like manner), stomach clenching, eye blinking (but head tic seems to be lessening). Took to Dr Margo Thienemann in Palo Alto CA. Diagnosed Pandas. Started 500mg Azithromycin for 10 days, decrease to 250 on-going. Within 5 days symptoms greatly improved. Not gone, but 70?% better. Looking into sun – gone. Head Tic takes longer, but disappears as well. Also in early sept – took to another doctor, full allergy panel, lead, mercury, several other tests. Red cell and hemocrit on low side of normal (4.49, 37.8) Zinc low out of range at 8.6, Magnesium also low (but in normal range at 4.8) all else normal. Just before Thanksgiving –mild tic, mood, separation issues, all resolved in a few days. I started him on prednisone burst, but on 3rd day he got a cold so had to stop. Upped the Azithromycin to 500mg/day added some Advil. Tics etc only lasted 5-7 days. Mild compared to other two exacerbations. Wondering if the onset of the old caused it. November – 2 days of head tics, not constant just at home in the morning – two days before leaving for sleepover science camp. He was fine at camp(teachers own child has epilepsy and he was watching Austin like a hawk!) , and no tics when he returned. That probably was stress realted. Things had been going very well – tics basically gone (maybe a few days where he would have a few head tics, I remember about 5 days of a minor vocal tic, but mild) No looking into the sun since September, mood and eating together still an issue, but we could take a ride in the car without him having him kick my seat because he could hear me “gulping” my saliva. Separation anxiety improved (TOTALLY gone actually – disappeared early February). Overall, greatly improved. Then, Late March starts looking into the sun again. Irritability and irrational behavior. A couple nights of bed wetting. Swallowing noises unbearable to him. I was fighting a cold – and he got a cold two weeks into this exacerbation (when we were on vacation in Hawaii). Increased Azith, and added some Advil a few of the bad days (and the day we had to ride on plane together – had to get him a seat away from me because of my “swallowing noises”). Doesn’t look into sun in HI although he wants to – says it hurts . No thoughts of death or separation anxiety this time, mild insomnia. The looking in to the sun tic is mild – and if it were a head tic I wouldn’t be that concerned about it because he doesn’t do it often enough to cause pain..but these are his eyes. We make him wear dark glasses, hat, and try to make him stay int he shade, but there isn't any at school or on the baseball field. I would call his exacerbations mild compared to the initial two before we started the Azith, however is it ever mild to look directly at the sun? And the swallowing issue has never completely gone away. It gets better, I even bit an apple in front of him once and he didn’t notice , but never disappears. Same with irritability. We don’t eat in the same room any more (haven’t since August). When we eat out, we have to go to loud busy places and we can really only get away with that when he is doing really well. Saw gastroenterologist because of some diarrhea, and wanted to rule out celiac. No celiac, but came up low IGG (704). Saw immunologist and have lab order (which we will do when we do the Cam Kinase blood draw) for IgG, IgM,IgA, (IGP) g IgG subclasses Humoral Immunity panel Pneumococcal IgG aB (PNAB 12 ) g Haemophilus Influenza b AB (HAET) G T & B cells Lymphocyte mirogen screen (LMS) GRN X2 thats where were are right now. Hope this helps someone else. I searched everywhere trying to find "looking into the sun tic" when that started. Maybe somone will see this and their child's odd behavior and know they aren't alone. I also didn't know that "disgust" can be a type of OCD. Sometimes its a precursor to a behavior that alleviates the feeling of disgust (like washing hands). Initally we thought that he was sensitive to noises, and the first exacerbation that might have been true, he was soooo irritable about everything. But then we found that the only thing that REALLY bothered him was his parents chewing and swallowing - he's fine with other people. What may have started with teasing at the table with his older sister about manners, chewing w/mouth closed, talking and eating, typical sibling preteen bickering, and turned into obsession. Then again, initially we though he just needed a hair cut so he would stop jerking his head around - he told us he was getting his hair out of his eyes when his head tic started. It was pretty obvious after a couple days that was not the case! Thinking about IVIG. Hopefully Cuningham test will give us something more conclusive to go on.

Thanks everyone. Interesting. Are the docs using different IVIG doses based on low/ high IGG levels? Our sons isn't actually all that low according to the immunologist we saw yesterday. Its just slightly low at 704 - range being 820-1800. But we are doing more tests to find out more detail.

You might want to ask the doctor to apply some lydocaine (sp) before the shot. It will numb the injection site. We bought a tube after our first blood draws for allergies - 12 tubes - works great for blood draws. Phychiatrist gave us rx. Haven't tried it for shots, but it numbs you up pretty well, so I think it would work. Takes a little while (15-30 minutes?) to get numb.

Thanks for sharing. It’s painful to watch our kids go thru this. Hopefully you intervened quickly enough and she is young enough that she will heal completely. You and Buster have done everything humanly possible to make that happen, and you should have no regrets in your care for her. I assume you like Dr. Lewis? I thought we might travel to Chicago or Connecticut to do IVIG, should we decided to go that way. I dread all the added stress of being out of the kids (and my) comfort zone, and having to subject him to all the germs in the airport /plane/hotel so soon after having it done. Also, having to consult over the phone. Makes me feel like I'm going to see a witch doctor or some charlatan that is offering me false hope. But if someone in Northern California is getting up to speed on this, I will definitely talk to him as we get closer. I'm going to post my son's story separetely. Thanks so much for sharing yours. Kerry

Vickie, Thank you! AND Thanks to Buster for the flow chart. We've been pretty much following that same route but haven't checked for microplasma pnemonia...so will add that to the list. Yes, I am in Northern California, and we finally got diagnosis from Dr Thienemen in Palo Alto (after a referal from Diana P). She is a Phychiatrist, and although treats a number of pandas patients, doesn't have any immunologist or rheumetologists or infectious disease doctors in this area that she can refer us to. I am now searching and asking specifically for pandas awareness before making appointments, and figuring out that I will need to do some education and prompt them for possibilites as we go. We wasted alot of money early on with neurologists and other doctors that couldn't help us in the beginning. I can't believe that Stanford doesn't have anyone working on this. We should have have immuno work up done earlier, but becasue he has no allergies or history of upper resperatory infections etc...I didn't think he needed that, since the only place I've seen it referenced is on the pandas network site regarding kids that also had alot of infections. No doctor ever brought it up (even Dr. Thienemen, she only had his ASO and titer done). It was a fluke that the gastroenterologist threw in IGG level. AND I woldn't have even known it was so low unless I asked for copies of all the tests, since she said that tests were all fine. His stomach is fine...I was just being paranoid and ruling out celiac. He has a somewhat sensitive stomach. I have to be dilligent about the probiotics, and when he was on 500mg/day Azith he gets nausea if the pills are taken at same time, he has to space them out, same if he takes advil (which gastroenterologist says is much worse for stomache than antibitoics). He is now on 250 azith/day, if he has any symptoms I will add an advil or the extra azith for a few days. I'm just wondering if the defecient IGG is a condition he had first, or is it caused because his immune system is working overtime. Either way, seems like low IGG is at least as predictive as ASO and anti bnase titers. Buster...you are the stats guru. If you read this, do you have any idea how many pandas kids also have low IGG? thanks again PS sorry for all the spelling erros typos - I'm in a rush. Is there a spell check in this forum entry box or do I have to copy/paste into another program?

Hi all. I'm sort-of new...I've actually been reading for months, this is my first post. Thank you all for all your stories. I cannot tell you how they have helped us. My son, now 11 years, was diagnosed with pandas 5 months ago. Tomorrow he has an appointment with immunologist in our area that is aware of pandas, but not an expert (there aren't any around here). Long story short, I cannot clearly make a strep connection. He has all the symptoms and as responded very positively to antibiotics. Since getting on them he has had several very minor exacerbations, one came with a croupy like cough, one came BEFORE he got a cough (but I was sick) and one seemed to be anxiety related and lasted for only 2 days and disappeared (he as going to sleepover science camp with his class). Since I was not 100% bought into the pandas diagnosis at first (because we can't make that strep connection! Although had pnemonia at age 6, and yes this could have been going on that long..he's always had weird "grumpy phases" we would call them, bizarre fears, and sensory issues. I wanted to rule out celiacs. And the antibiotics had given him some diarrhea. So I took him to (yet another)dr.) Gastoenterologist this time ran some tests, one happened to be IgG. Can back very low. He is asymptomatic. I've read that lots of pandas kids also have allergies and lots of colds and infections. That's not him,he's pretty heathy in that way . The gastroenterologist (NOT a pandas beleiver I discovered) just told me he didn't have celiacs or any of the "gut bugs" she was screening for, and all is tests were OK. I got copies of the tests, and they are not all OK. In addition to the low IgG (which i keep seeing in pandas posts) he has several other borderline and slightly below levels. Does anyone have ny advice on what I should be asking immunologist? Cunningham is mailing my CamKinase test as we speak. I hope to use it in my decision of weather to get IVIG or not. Although he has "minor" symptoms compared to many, one of the things he does when he has an exacerbation is a self-harming "compuls-tic". His tic-like compulsion, to look directly into the sun. It's fast, and thank goodness he doesn't have it bad like the tics he had before we got him on the antibiotics, but still, I'm obviously worried he could cause permanent injury to his eyes. Thanks all.