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Hi there, There has been a lot of talk about the natural calm - and I remember Chemar posting a link - but I can't find it - I did a google search and was not sure where or what to buy - everyone seems be be having such good results - my son only takes a multi right now - although when he is sick he is more open to taking other vitamins - he has hit a rough patch - we have all been sick with colds and he has had an increase in tics -nothing terrible - but there just the same. Could someone advise what to buy -he is a 8 years old. Thanks

Hi Everyone, As many of you know my son is photosensitive and we have had good success with an LCD tv - we are currently doing a reno and planning on buying a slightly bigger tv - our current one is about 15 inches as recommended for photosensitivity. We are planning on buying one slightly bigger and also thinking of a plasma - for design reasons. Has anyone had problems watching a plasma but was ok with an LCD. I am trying to search the internet for some info but not really getting very far. Not sure if Claire is checking in - would lover her input.

you are right Chemar. Previous to azith we have been on full antibitotics for about 5 months after the initial onset - then prophylactic amoxycillin for 2 years - we thought he was doing ok - so much better than at the beginning so we were happy - but when we went off the amox he deteriorated terribly and when back on amox it did not help anymore - tried many other antibiotics over the course of about 4-6 weeks, no real improvement - then as a last resort tried azith - tics were 100% gone by the end of the full dose run and we have been on prophylactic dose since September - he is mostly symptom free and when he does have symptoms they are mild - no emotional lability anymore either. not 100% symptom free all the time but the symptoms he does have no one would notice but me and they coincide with viral illness or too much playstation (we now limit to weekends only and time limited)- and he is so happy which is really the most important thing. Azith has been life changing for him and for all of us.

If I am understanding correctly these tics came out of nowhere? If so - go back to your doctor and ask them to do a strep test - both throat swab (not just the rapid test) and blood test to test for strep Titers. Insist on the blood work. Do some research on PANDAS. My son had a sudden onset of symptoms - had complained of a sore throat in passing the week before - nothing ongoing - we certainly did not think he had strep. Luckily the doctor tested for strep - he had it and very high titers and ultimately PANDAS. Antibiotics are needed as soon as possible if this was triggered by strep. We found tv/games triggered for my son too - my son was 6 so it was easier to take away the tv etc - we replaced it with some money as a reward every day he did not watch tv. While my son is mostly tic free now - and on long term antibiotics - he did recently start playing playstation with no symptoms - until last week when he played tons (we are renovating the basement so there is not as much to do) After a few days he started shaking his head (a tic we had never seen before) so.... we have a new rule, playstation only on Friday and Saturday - and for a limited amount of time. If you read Claires posts on tv - photosensitivity and share the info with your son he may be willing to try for 7 days if there is a reward? I still think - if this is strep related that MUST be dealt with ASAP. Good Luck.

sending good vibes your way! hope you have the same success as we did . As I said earlier when he switched to azith we saw an improvement by the next day - but did not want to get our hopes up - by day 3 it was significant and by day 10 (we extended the course as he was doing so well and we wanted to makes sure we got rid of any infection) he was 100% tic free. That was from a once a second vocal gasp/squeak - literally! By day 2 I think we were seeing 15 seconds between them and then the space kept increasing to several minutes etc then they were gone! That is great that you too have a doctor willing to let you try the azith. Looking forward to a good news update.

Thanks Chemar - I was just coming back to edit to add that important piece. That by being on the azith it can kill the infection and staying on it prophylactically it helps ensure that your child does not get another strep infection, or any other bacterial infection, so reducing the load on the immune system.

I am not sure what anti inflamatory properties azith has - what I understand about it is it can act as an immuno modulator - so it dampens the immune systems response, so the antibodies are not attacking the brain and therefore there is no swelling. You could do some research on azith and immuno modulators. I think there have been several studies using it for CF. Also - our immunologist said they are looking into it as a treatment for asthma as well.

We found last year during allergy season - spring and summer, that taking Aerius helped our son when his tics increased due to allergies.

Thinking of you and Hoyt and hoping this passes quickly. Lucky kid to have such a great mom - and such a great name!

We use one called Pro-Bio SAP-50 that we get from our naturopath. We used to use on from the health food store. NDF Forte (I think). We have always used a single bottle that has several strains. In terms of ticcing and improvement - when we had the original sudden onset - it was on day three we saw a dramatic improvement - it was like the tics went away as quickly as they had come. This summer it was probably on day 2-3 that we saw a significant improvement when we switched to the azith - although by the second day I felt I was noticing him getting better but did not want to get my hopes up - after day 3 we were sure he was getting much better and by the end of the run on the full dose he was symptom free - we ended up keeping him on a few extra days as school was starting up - so in total he was on a full dose for about 11 days instead of 5. Generally from what I understand if that antibiotic is working for the PANDAS kid there is a significant improvement within the first 3 days - although I think I have read other accounts of it taking a little longer. Our experience has been within the three days.

My biggest fear was permanent damage as well - and my son had SEVERE tics at the time of onset (no OCD ever). The good news is my son has been 100% tic free - so I know there is no permanent damage. Also - if your son currently has a cold - his immune system is really struggling - so you may see an increase in tics (PITANDS - Ped. Illness triggered auto-immune disorder assoc with strep) My son would have an increase with viral illness as well. I know with some kids certain antibiotics do not work at all - Ronna found Keflex worked for her initially but amox did not ( I think anyway) This summer we tried Keflex and Cephasoros (sp?) and both did not work - but the azith was amazing. Regarding cold medicine some kids react to the color in the medication. My son generally did not show any symptoms of illness - just tics. Only in the last few months does he really show "normal" symptoms, like a stuffy nose etc. I have been giving him cold medicine when he has symptoms and had no problem. Also - since you are on antibiotics- probiotics are important to take as well - I did not do this initially and we ended up with a yeast overgrowth. I highly recommend taking probiotics for your son - just give it at least 2 hours before or after the antibiotics - you can get them at a health food store. I have talked a lot about the bucket theory (from Dorris Rapp)- the immune system being a bucket that can handle so many things individually, but sometimes when there is a combination the bucket overflows and you get tics - also with an infection - it is like a hole in the bucket and things overflow. Try to keep the bucket as empty as possible - for us that meant removing dairy. Also start with a good multivitamin. If you look at my early posts you will be able to see what we did early on. Good Luck! Just to add - when you reply to the post - if you click the button below the one you are clicking ( I think it says add reply but does not have "" marks. Then it will not repeat the previous post in quotes.

Hi Mike and welcome, My son has PANDAS - he is 8 now and was diagnosed after a sudden and severe onset of motor and vocal complex tics. He was 6 at the time. After three days on antibiotics the tics improved 80% - it is a long story - but ultimately every time we went off the antibiotics the tics came back - we eventually went on amoxycillin prophylactically - with good success - last summer we went off the antibiotics to see how he would do and it was terrible, he had a vocal tic by the second - we went back on amox and it did not help, then tried many different antibiotics separately and in combination and none worked - he improved a little but not much. We then tried azithromycin and within 24-48 hours tics were 90% gone - and by day 10 100% gone. We have stayed on it since August - prophylactically - on two occassions we increased the dose to a full dose when he was having tics from a viral illness - and they went away. I think there is still so much not known - but my thoughts after seeing many specialists - neurologist/rheumatologist/infectious disease/immunologist is that the azith is also working as an immuno modulator - so helping modulate the immune system. You are right that it would seem once the infection is gone the antibodies are gone - but my sons Strep Titers remained elevated at around 700-1200 when normal is under 200 - some say under 60. Molecular mimicry is going on in the body and the antibodies are mistaking the basal ganglia for an infection and attacking it. It is very similar to Rheumatic Fever - same molecular mimicry. So I think that by modulating the response of the antibodies the azith is helping. We also did strep titers a few months ago - after being on azith for a few months and for some reason - it is the first time his titers have decreased in any significant way. They were in the 400s. I am certainly not a doctor and can tell you all the specialists at this point don't really understand it but say just keep doing what we are doing. My son is soooo stable now - he is happy, healthy and thriving. Tics still come if there is a viral illness in the home, but they are very minor and no one would notice. Last August we did not think he would be able to be in a classroom and he had missed most of his soccer season as he was not well. Since September he has only missed a week of school from a bad cold - and has excelled during his hockey season - up at 6am for practices etc. The emotional lability is gone as well. I expect we will stay on the azith for a long time. There is an article on azith on the NIMH PANDAS website - you could always print it and take it to the doctors. Ronna's son also has PANDAS and they have seen good success with azith as well. Feel free to ask any questions. Knowing what I know now I would recommend any new PANDAS parent to advocate for a trial of azith. Keep advocating for your son - I begged for the antibiotics at the beginning- took in lots of literature. We have done other things to help his immune system as well - did food testing and found he was allergic to milk/wheat/eggs/ - that was a shock. Also - changed to an LCD tv - as he would always tic more at the tv - he can play playstation on an LCD - but this x-mas tried someones gameboy and had eye tics almost immediately. We also had him on a vitamin regiment - remember this is an auto immune illness. The immune system is the key.

Just wanted to add - it is not just the CRT vs LCD - the other contributing factor even when watching an LCD - is what kind of graphics are in the game - lots of flashing - quick action can trigger - any japanimation - pokemon/yu-gi-oh. My son has been ok on the PS2 but he only plays about a half hour at a time on the LCD sitting far back. He really has not taken to it too much and has not played in weeks. Over the holidays his cousin brought a gameboy over - within 5 minutes of looking at it my son started to blink - he had been tic free before. I believe the gameboy is LCD - but the screen is really small. Also - there are warnings on gameboy about blinking or other movements - and to stop using if you find this happens, If you look at PS3 I am sure there may be some similar warnings.

Hi Kim, I think the problem is that the antibodies that are produced at such high levels - continue to believe there is still an infection in the body (even when it has been eradicated) - due to the molecular mimicry - and the area of the brain (basal ganglia) presents itself the same as the infection so the antibodies attack it. So -- the body of a PANDAS kid still thinks the infection is present - so the antibodies remain at high levels - then comes PITANDS, any form of illness, viral or even allergy - then kicks these already high antibodies into action - and they begin to attack the brain again due to molecular mimicry and the antibodies believing they are actually attacking the strep. Does that make sense, that is my understanding anyway. That is why I think the azith works so well - it is acting as an immono modulator - perhaps dampening the response of the antibodies in general - while also preventing more bacterial infections, given the body a break. Azith is being researched for its use as an immuno modulator with CF patients and asthma patients. I am no doctor - but through the years this has come to be my understanding. As I have said so many times - azith has been life changing for our PANDAS son. I would stay clear of other drugs - unless it is really a last resort - this summer when all the other antibiotics were not working, and we were already doing the food/vitamins etc - I would have gone to other drugs - as the way he was he could not function in a classroom - a couple days on azith - and he was 100% tic free and as happy as a clam! The quotes you posted are the exact same one's that were there 3 years ago when we started down this path - I think the research continues - and hopefully soon there will be a better understanding of what works for these kid.

We had a fabulous teacher in grade one - my son was diagnosed with PANDAS a week before grade one started - we did not tell the teacher as he was doing well when he started - as he had been on the antibiotics for a week- but he deteriorated when off them. She knew something was up - more behavior than anything - she could not put her finger on it, she knew it was not ADHD - but he was impulsive, lacking focus, not reading at grade level ( his eyes were ticing tons). Anyway - she became a great support and we kept her updated and she was interested, when he was not able to focus we knew his body was fighting something so she would tell us at lunch and we would keep him home in the afternoon - it was a difficult year as there were so many unknowns and he was not doing well. Anyway...over the x-mas holidays we made the connection to the lights after going no screens over the holidays and then going to toysrus for his reward - he starting ticcing quite badly when we went into the store - I assumed it was excitement , I could not believe my eyes - we left then I had to go pick up something for the baby from a baby store - same thing again, but it did not make sense as there was nothing exciting about a stroller cover! One last stop was another store to buy the baby a present - he had wanted to help me pick it out - I did not want to go into the store after seeing what happened at the last stores - anyway -he really wanted to go and help pick so we went in - it is a cool store with lots of fun stuff, I was bracing myself for huge tics again but nothing happened - it made no sense. Claire suggested the lighting not excitement - and I realized the last toy store had incandescent lights. Anyway, he recovered and then when school started up again I mentioned it to the teacher and said I hoped the lights in the classroom would not trigger anything, he was fine the first day but the second day got worse and again the next day worse, it was the teacher who offered to have them off - we also moved him to sit close to the window and she shut off all the computer monitors in the classroom. She was amazing. Tics decreased again. Once a supply teacher came and he had tics at the end of the day. So then notes were left for the supply teachers. The other kids knew the lights had to be off, and no one had a problem with it. Before starting the next grade I talked to the teacher and she was fine with it as well, same as this year. Lots of studies have been done on how bad this lighting is for kids - esp. those with ADHD. Sorry this is such a long explanation - but I had a great teacher at the time, and now it is passed on from grade to grade. We also take in an LCD tv for the class to watch when they watch a movie - the kids think it is cool. I am now trying to get the school to purchase one - as the kids are getting bigger and need to sit at their desks - so our small one is getting too small. My doctor is writing a note so when I get that I will meet with the principal.

You should search for some of Claire's posts on photosensitivity. She has provided a lot of info . My son is also photosensitive but seems to be growing out of it. When he was sick at the beginning of the PANDAS we could not take him into stores with flouresent lights, he is now ok. The classroom limits the lighting, turning 2 out of 3 flouresent lights off. I think there are glasses or lenses Claire may have tried through Irlen - if you google Irlen and photosensitive you might find info. We used blue sunglasses which the doctor had told us were the best colour for him - they were sports glasses from a regular store. I have also read about covering one eye - so wearing a patch - while playing video games - probably ok if you are home alone - you could research photosensitive epilepsy as many triggers are the same. Good Luck,

In the summer when my son was really sick - with PANDAS and not getting better on his previous antibiotic my doctor consulted with the hospital about giving him steroids, the hospital would not give the go ahead and said it was too experimental ( I guess because it would be given to treat the PANDAS not some other illness) Luckily we ended up trying the azith which was great. Thanks for the update Mommy007 - I love reading them.

Hi Deedee, Ronna did post the link at some point over the last couple of weeks - I don't know how to add a link - but is you type PANDAS NIMH into google, then go into the PANDAS info site - then click at the top, recent publications - the first publication is the one that speaks about azithromycin. You could just print it off and take it in to your doctor - that is what I did. Good Luck - azith has been life changing for us.

Welcome Rachael. I am assuming that in your post you meant your son was diagnosed with PANDAS not TS - as he is now on the amoxicillin as treatment. From what I understand antibiotics would not treat TS patients. Just curious about the testing done and how the diagnosis was made. My son also has PANDAS after a sudden and severe onset - as well as a positive throat swab and very high ASO titers and DNAse. I do remember before I started posting here there was a PANDAS mom whose son's tics got way worse on the antibiotics - I think her name was Heather - so you may want to search her posts - I think yeast was the problem, or it was the artificial coloring in the antibiotic. He should get better not worse on antibiotics. Often with PANDAS kids - one antibiotic does not fit all - so you may have to try another. Azithromycin seems to work well for many. Also - please think about having him take probiotics since he is on antibiotics. Generally from what I understand most PANDAS kids get significantly better within a few days on the correct antibiotics. That has been our experience.

I don't think you could say they were PANDAS free as another strep infection would cause the onset again. That is partly why the antibiotics are helpful, to prevent another infection. Also, with my son he has increases with viral illness' now (PITANDS) my feeling is that as the titers decrease - it has taken 2 1/2 years to go from 1200 to 400 with no known strep infection in that time - and ongoing antibitotics - that when his body is hit with an infection or something else to disrupt his immune system (foods/allergies) he now has less of the antibodies - which are the antibodies that attack the basal ganglia area of the brain causing the symptoms. So that could explain whey symptoms are decreasing as well even when sick with a viral illness - that there is less there to attack the brain. I am no scientist and so much of this goes over my head, but that is my basic thought on it - not sure how scientific - Also, different labs have different numbers for "normal" I believe ours says under 65. Doctors have not been able to explain the whole thing to me in terms of the titers because I think they just don't fully understand why they have remained so elevated. What I am writing is certainly not fact from anywhere other than just how I have processed the info - and it just seems to make sense to me. We have always been happy to see the numbers slowly come down - so we felt we were on the right track. This is the most significant drop we have seen for a long time. Usually it was down 20 or so or staying about the same. We used to test more frequently but my son is not a huge fan of needles so we are doing it every 6 months or so now. From some literature it does talk about kids have chronically elevated titers - and that is normal for them. If there are no symptoms then it would be something many people wouldn't even know there kids had. We only tested the titers after the sudden onset.

Thanks Chemar.... and good luck Michele

Hi Chemar, I had suggested to Michele that she post where she lives as you are always a good resource at helping people find doc's aware of the condition. Here is what she posted... "I am south of Akron, Ohio not too far from Cleveland Clinic" I just did not want you to miss it in the thread. Thanks,

Daniel - this is from the PANDAS - NIMH website: Q. What exactly is an anti-streptococcal antibody titer? A. The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO) titer, which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse- titer, which rises 6-8 weeks after a strep. infection. Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child? A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection. Q. When is a strep. titer considered to be abnormal, or "elevated"? A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers. It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.)

I am not sure if you have already posted where you live - if you do again along with where you are willing to travel - Chemar seems the expert on doctors who understand PANDAS. Have you taken in literature to your doctor? I always take all the literature from NIMH when I go and see a new doctor - just incase they have not heard of it. I was lucky with the ID clinic as every time we went they did a literature research and reviewed it before I came - so they always had the same publications as I did. I am getting mixed up as there seem to be a few new PANDAS moms - has your son been on antibiotics? Did he have a sudden onset? The joint pain, frequent urination, emotional lability, ADHD type behaviour are ALL symptoms of PANDAS as noted - again this info in on the NIMH website. I just scanned down and one of your posts said the doctor wouldn't give meds as he felt they take too long to kick in, then the episode is over - with antibiotics, for us, it kicks in almost over night. We have not tried any other drugs.

Hi Michele, For my son - we find when he is sick tics last a couple of weeks - things start to increase, peak then decrease- he is now doing really well so no one really notices. This x-mas tics started to increase when we all had viral illnesses - we decided to increase his antibiotics after a few weeks of them slowly increasing, usually they decrease on their own. When I mentioned to my parents that we increased the antibiotics they were surprised as they felt he was perfect over the holidays. So that is how much better he is doing in general. In terms of doctors - the best kind is one who has heard of PANDAS and accepts it as a diagnosis. We have seen our reg. ped. a child psychiatrist - who agreed with the diagnosis and did not want to prescribe drugs, a neurologist (same diagnosis) an Infectious disease clinic ( who gave the ped, the go ahead with long term antibiotics) an immunologist ( who said just keep doing what we are doing if it is working) and a rheumatologist ( who just double checked his joints as he complained of joint pain this summer when he was sick.) and a naturopath. The most useful have been the ped. the naturopath and the ID clinic. My son also has PITANDS - we try and boost his immune system with good food, keeping away from bad food, lots of hand washing, trying not to get overtired etc. - this was more naturopathic stuff - we did blood work for food sensitivities, OAT testing, pyroloria testing. We think my brother has some form of PANDAS as a child, and has outgrown it - no symptoms at all - it is only after my son's diagnosis some of the stuff made sense to him and my parents. In all of my research over the years - I have faith that these kids will outgrow this. Chemar has talked about monolaurin - I have meant to look into it more, my son is getting more reluctant about vitamins - and is doing so well now - I am letting things slide a bit.