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Hi carloyn, I had a lot of trouble with the bread - as I had to make it soy free, dairy free, egg free, wheat free. Ultimately I started with a recipe and kept changing it until something edible came out - it took a lot of attempts. The bread I made had to be eaten immediately - even a couple hours later it was awful, and it did not freeze well. I don't make it anymore as my son is eating some regular bread - without dairy. I could dig out the recipe if you want, but if you can eat soy and eggs then you could probably find a much better recipe. If your issue is just the casein, you could substitute with goats milk ( which is what we did) or soy, many breads are just made with water as the main liquid, and soy powder. Let me know if you want me to give you the recipe that we used for a while. I could send it later today. The pizza dough that I made was actually not too bad - again it did not freeze well at all and had to be eaten right away. I have found that with most baking I do gluten free - luckily the kids like it and they go through a batch of cookies or muffins before they start tasting bad.

Thanks for the replies - I have been away for a few days. My son's tics pretty much disappeared within 2 1/2 days of being on the two antibiotics. He has had tics for a few weeks, and one's that were not as subtle as usual - the tics are now increasing again and I am sure it is due to yeast - his tongue is white - and he is on a lot of antibiotics - his stomach is upset etc. I am figuring things may have to get worse before they get better and by giving him these antibiotics now with hope they will eradicate any lingering strep - I will be happy when the 10 days is over ( as will he) I am giving him probiotics but it is hard to fit it all in with the 2 hour lag between antibiotics and probiotics, and the meds are 3 times a day and we were on holiday - so it was hard to keep track of time. Anyway - I do think there was something there as he improved so much in the first couple of days. I am hoping that my youngest just happened to have strep infection and is not a carrier. He continues to exhibit no symptoms. I will call the doctor tomorrow to ask the question about re-swabbing the youngest. Evie - I forget how you know the strep is lingering - is it from high strep titers? Have you been off all antibitoics for 6 months? I will have to re-read your posts. Thanks for the info Kim.

Hi everyone, Just thought I would update on some new developments. We had decided to take our son off of the prophylactic antibiotics since school was over ( he has been on antibiotics for 2 years). I went in to see the doctor and in talking with him I kept going back to why his strep titers were still so elevated - 590 - after 2 years on antibiotics so in theory no exposure to strep? I wondered if in fact he was getting exposed but not having a full outbreak due to the antibitoics he was on. Or if somehow strep was lingering somewhere in his body. Ultimately we decided that before we take him off the antibiotics we would swab everyone in the family just to make sure no one was a carrier (no one is currently sick). We got the results and my youngest son tested positive - we were quite surprised! I am trying to understand if this makes him a carrier since he has absolutely no symptoms of any illness. The current plan is the 2 year old will go on a 10 day course of antibiotics (amoxicillin) and my PANDAS son will go on a 10 day course of full dose amoxicillin as well as a 10 day course of clindamycin - at the same time. This is in hopes of eradicating any lingering strep. Our plan - is to then stop all antibiotics. I am assuming we will re-swab the 2 year after the 10 day's on antibiotics. If anyone can enlighten me about strep carriers etc I would be happy with any info. I have been doing some research but still am trying to figure out what it all means, and if the amoxicillin is going to be enough for him - I would think we would need to be more aggressive if he is a carrier, but I am not sure if the fact he is young makes a difference. Or if the doctor is wanting to be more cautious first in just using the amoxicillin and re-swabbing, I think if he swabs negative he would then not be a carrier, as carriers always swab positive? My ped. had left so I could not ask any questions - so I am sure I will have lots to ask next week. Did I mention....I hate this!!!.....

Hi Carolyn, I did not have a chance to reply when I first read your post but was going to suggest it sounded like a muscle spasm. I used to get this in University quite often, I am assuming from eye strain. I have not had it for years. I have no history of tics. But my eye lid on one side would flicker for periods of time - I was told it was a muscle spasm. During University I did start to wear glasses for reading, I think that helped. I don't wear glasses anymore and have not had an eye spasm for years.

Just had to respond to the 'tic cough' my son started having a chronic cough at 3 - it continued more intense at times but always present. We always knew where he was hiding in hide and seek - just had to listen for the cough. He was diagnosed with PANDAS at 6 - with a SEVERE onset of many many tics - vocal and motor - overnight explosion. Antibiotics cleared all the tics except the cough - which I had come to terms with after seeing all the other possible tics he could have. Ultimately, this tic remained until we went off all dairy - the cough was gone within the week and really has never returned, even when he does have PANDAS symptoms the cough is not present. I believe the cough was an allergy to dairy, my husband had also had a chronic cough over the years which he blamed on his asthma -he has no other tics and never has. His cough is also gone now that he is off all dairy as well.

Thanks Mommy007 for that positive update. Just wondered if you could let me know what you consider to have been the proper treatment? Do you mean just the prophylactic antibiotics, or were there other treatments you think were important in your sons recovery. My son is turning 8 and was diagnosed after a very sudden onset of severe tics at age 6. He is doing amazingly well - although the last few weeks has had some ongoing minor tics, we are thinking he is going through a growth spurt. While he can be tic free it does seem that there continue to be lots of triggers, although the triggers now result in very subtle tics, and usually only one - whereas in the early part of the illness a trigger would result in many tics and more severe one's. No one would know he has tics and he does fine in school now, has lots of friends and enjoys all sports. We are actually thinking of going off the prophylactic antibiotics in a week or so now that summer is coming and he is out of school. I am in agreement with you that time seems to be one thing that needs to pass for the illness to pass - after all it is a ped. illness and the body changes so much. Have you tested the ASO titers during the illness, if so what have your results been. My sons were very high - 1200 at the time of the illness and have slowly come down over the last 2 years to 590 - normal range is under 65. Just curious as any info from other mom with PANDAS kids is so valuable!

bumped for Deanna

Hi Deanna, I had replied about the ASO titers on the other thread you had started. My son's continue to be high too - seems some kids remain high for quite some time, my doctor and I have agreed to treat symptoms rather than numbers at this point. Many times we have done the blood work when he is completely symptom free and has been for quite a while, yet the numbers remain very high - 1200 at one point when he was doing amazing. So...over the past two years they have slowly been coming down - most recently 590 - normal us under 65 with the test we do. I was thrilled with 590 as maybe 4 months prior it was at around 800. Slow and steady. I think this shows how crazy the immune system of PANDAS kids can be when they have had a strep infection. I am not sure if Ronna has posted or tested her son and if his levels ever came down to normal? If she is reading this I hope she will respond, although she will be very busy these days with all the kids. My son has remained on prophylactic antibiotics but we are planning on taking him off them in a few weeks - YIKES - He has been on them for two years now. If he does get sick again like he did a few years ago I will without hesitation put him back on the antibiotics. Good Luck, from all that you are describing sound PANDAS like to me. Have you looked on the NIMH site, also if you do a search of RONNAS posts you will find a wealth of info on ASO titers etc. She has copied some info from the NIMH site ( I think)

I live in Canada so know nothing about the doctors signatures etc, required in the US. I did it through a naturopath and it was not covered. Good Luck!

My son has PANDAS. He has had several blood tests done over the last 2 years. When he first got sick his ASO titers were around 850, then a month or so later 1200, normal is under 60 ( I think for the test he had done - tests can vary) We think it went up to much higher than 1200 - probably up to around 2000 which it can go up to, then was on it's way back down when we tested at the 1200 mark. It usually is highest a few few weeks after the infection - and we had tested a week after the strep (we think). From what I have read it should come back to normal levels within a few months. His has taken a really long time to come down, he got back down to around 750 last December and he was tested a few weeks ago and was at 560 - the lowest he has been. During the past 2 years he has been on prophylactic antibiotics, so in theory has not had a strep infections during this time. I have e-mailed NIMH about this and it does seem that some kids have higher numbers and they don't come down as quickly. I am hoping that over time we continue to see a decrease in numbers, we do not test too often. The titers show the child has had a recent step infection but does not indicate a present strep infection. Regarding when a child should be put on antibiotics to fight step, my understand is anytime there is a confirmed strep infection it should be treated. I wish I had an answer about when the PANDAS will go away. My son was quite sick early on and is presently doing really well, he has never had an episode like the one's he had in the first few months. He is turning 8 - and was had just turned 6 when it happened. ( I see my middle son's friends who are turning 6 now and they seem so small - I can't believe all that my son has been through) He is symptom free much of the time and when he does have symptoms they are minor and not noticed by others. What we see as triggers currently are allergies - seasonal - aeirus seems to eliminate this, exhaustion from sports, being over tired, he used to react to pizza at pizza day etc but seems to manage that ok now. I think his body continues to heal and he can manage the stresses that used to cause a reaction. Some of the things we have done to help his body heal, the blood work and determining food allergies, going on vitamins - this is now very reduced - removing all screens then replacing with an LCD screen, limiting florescent light exposure. Hope that helps a little - please ask any questions.

The IGG test shows any immune reaction that you are having to the foods being tested. The results can vary from moderate to severe. The reaction when eating the food can be delayed meaning up to 3 days, this makes it hard at times to pin point which foods cause which reactions. We did the IGG delayed food allergy test and found my son was allergic to quite a few things, once off the foods he improved significantly. ( He has PANDAS) We decided to do the test rather than the elimination diet as we wanted answers in black and white as we were dealing with so many unknowns, and also he already had a limited diet and removing all dairy for example 100% is a lot of work - with no slips etc. We were AMAZED at the difference once off milk, then wheat, eggs and soy. We could see an improvement within the week. He is now able to have wheat but we still try and limit it, I still do a lot of baking with rice flour and oats. One reason many people would try an elimination diet would be the cost of the blood work. I spent about 300$ on the test, and then tested my other two children and my husband and myself. So, 1500 is a fair bit. Worth every penny mind you. My husband also had a lot of allergies and once off the foods his asthma improved 80%. My other children are also now off all dairy as per the test results. Hope that helps. I do think it is a test worth doing, but also think if you are committed you could removed the foods one at a time as per Doris Rapp's book. There are several common problem foods - casein ( diary), wheat, soy, eggs, - the test we did tested over 100 foods. If you are doing an elimination diet do not replace milk with soy as there is often an allergy to both ( 30% of people I believe) Good Luck.

Hi Emily I don't have time to write at any length right now, but please read up on PANDAS and PITANDS. If your son had a sudden onset - it could have been caused by a strep infection. Antibiotics are necessary if this is the case.

We saw a dramatic improvement on the third day of antibiotics. Dramatic meaning within a couple of hours tics decreased 80-90%. On day 2 I had called the doctor as the tics were not any better, he told me to give the meds 72 hours to work. I could not believe how much better he got on the third day.

Hi Emily, I won't recap our experience with PANDAS as I have posted a lot along the way. It is nice to see someone referring that info to a new PANDAS mom, as my intention all along in posting was hoping to help someone in the future. From my experience with PANDAS, the immune system is the key!!! It seems once your child has PANDAS (and for many, prior to PANDAS) there is/has been a weakened immune system. Lots of ear infections, colds etc at some point. It is important with PANDAS to get the strep titers done and confirm the strep infection, then to go on antibiotics. We made the decision to go on prophylactic antibiotics after many months on full antibiotics. This is still somewhat controversial although the last study I read through the NIMH indicated the kids did better on the prophylactic antibiotics. Many doctors are not keen on this and I had to advocate to get this. ( PLEASE don't forget to also use probiotics - something I had read about by did not do for many months - resulting in intestinal yeast overgrowth) Ultimately, after 2 years we are planning on going off the antibiotics this summer and see how he does. My son still has minor symptoms when his immune system is under attack - from any number of things, pollens, foods, viral illnesses, being overtired, growth spurts. His symptoms are minor and no one would notice them. When he was first sick his symptoms were impossible to miss. I am not sure how TENEX would help, other than it will deal in theory with the symptom - the tic - but with PANDAS you need to get to the root cause, the immune system. I have not gone down the path of meds, although totally understand why people do. I had many desperate moments during this journey, and did have a bottle of clonidine at one point, which I had asked for but never used. In brief, the things that have helped my son are - removing all CRT screens - BIG trigger ( LCD is fine) adding in vitamins, doing food allergy testing, then removing wheat, milk, soy, eggs, - wheat has been back in his diet with no problem. We also see an increase in symptoms with allergies so he is currently on Aerius right now, due to pollens, trying to keep away from illness as best we can, taking it slow if minor symptoms appear - he does not have typical illness' - the whole family can have the stomach flu and he will just have an increase in tics. So, we see tics as a sign he needs to slow down. Again, tics have never been as severe as early on in our journey. Hope this is helpful, please feel free to ask any specific questions.

Hi Jeepsmom, As Ronna says, I too am not a "PANDAS expert" but am an expert on my son with PANDAS. Thought I would try and answer some of your questions. My son also never had any symptoms of strep. Swabs and blood tests would confirm the diagnosis. At the early stages of his illness, after the sudden onset of symptoms along with a strep infection, my son's tics were always worse when tired, driving in a car or watching tv. Definite triggers. Through this journey we discovered he had photosensitivity - and he now watches an LCD tv which does not flicker. It is the flicker which causes the reaction. The same flicker that can happen with floresent lights and with light coming into the car through trees, houses, buildings etc. If you look into photosensitive epilepsy you will see many of the same triggers as your son is experiencing. My son also had a lot of trouble with bright lights - he wore sunglasses and we used one's that have a blue lens which is supposed to be better - I think yellow and red are the worst. He no longer has the same issues with the sun - although today did say his eyes did not feel well in the bright sunlight. No tics though. I think B vitamins are supposed to be good for photosensitivity and we also found L taurine was good when he had eye tics. I think a good way to test for strep in light of him having no symptoms is to do blood work and test strep titers - it shows if he has strep antibodies indicating he has had a recent strep infection. We have just re-tested for this - my son's numbers have remained high for the last 18 months so I am interested to see what these results will be. My son has been on prophylactic antibiotics for over a year now and is doing really well, very minimal tics - most often he is tic free and when he does have tics no one would notice they are subtle and there is always a trigger - ie. allergies, viral infection. I do think PANDAS is something that will be outgrown and I think there are ways to help minimize the symptoms. This is an auto-immune disorder so focus on what could be bugging his immune system. For my son every day foods were a cause of tics - through testing and then removing foods, tics decreased tremendously, also yeast became an issue due to on going antibiotic use. We are now addressing that as well and my son has been very stable. When tics emerge they are subtle and there is always a reason for it, something that has bugged his immune system. Good Luck!

Hi Gina, We have found that seasonal allergies cause tics - eye squints start and then once I make the connection we use antihistimine eye drops and the tic stops. We also notice that rainy weather can cause an increase - probably molds in the air. And every once and a while with the change of season subtle tics come out - we use Aerius during these times and within a couple of days the tics are gone - there is clearly a connection. My son does not show normal allergy symtpoms nor normal illness symptoms. We know he is sick based on any tics that emerge - then if he takes it slowly he is fine within a few days. The whole family can be sick with a virus and he only shows an increase in tics. Weird how the body works! Good Luck

Just a quick note - maybe you should look into PANDAS. My son also had what would be described as transient tics for a while then there was a sudden and dramatic increase in tics - coinciding with an untreated strep infection. If you are doing tests - you may want to get his strep titers checked. If an untreated strep is the problem he needs to be on antibiotics.

Hi Kim and Mos, Kim I can only imagine the hours you spend in front of the computer. I try and read all of your posts but so much goes over my head. You seem to have really got a handle on so many different things. I love the easter chocolate myself so buy some and hide it and eat it when no one is looking. Mos - I will try and answer your questions. 1. Does this mean we have a mild case? since he just has eye tics now or can it get worse? - My understanding of Pandas is that there is often a sudden and severe onset or increase of symptoms - where you can look back and remember the day the tics or OCD occurred. This was certainly my experience - ( the last Monday of August when he had just turned 6) My son did have previous transient tics - throat clearing, eye blinking prior to the sudden onset - tics were never complex and were only one at a time and were not severe, but that Monday he woke up and the tics that emerged were like nothing I had ever seen before - severe motor and vocal tics - simple and complex tics - his body was in constant motion, tics I had never seen before or believed were possible to keep up - I was exhausted watching him. I think now that the throat clearing tic which had been the most constant thing since he was 3 - and has not come back since going off dairy - was in fact a dairy allergy. The transient eye tics I now think are allergy related as well - they have come back a few times, his eyes under the lid are red when it happens and within a few days on allergy eye drops the tics go away. I feel like he is ultra sensitive and small irritations can lead to tic like movements. This used to happen with chapped lips last winter as well, he would do a mouth stretching tic like thing but only when his lips were chapped, once healed he would stop. Three days into the full dose antibiotics the tics were 95% gone, after the run of antibiotics he was ok for a few days then the tics came back strong again. Back on antibiotics things got better - ultimately I think things deteriorated again due to yeast overgrowth. I won't tell the whole story again if you have read my posts... 2. How long does this disease typically last?..How old is your son? My son is almost 8 - it has been just over a year and a half since his PANDAS diagnosis. It is a pediatric illness so from all that I have read etc and what I choose to believe is that he will get better - he already is so much better. We think my older brother had this as well - to a less severe extent - he only did eye blinking - and it was assumed it was a nervous habit - he had other behaviour things - he is fine now. Currently no one would notice anything is different about our son. While almost two years seems so long, we have never been with severe tics other than the initial onset and the weeks following. Since last January when we started on the alternative path he has been doing really well - ups and downs and slowly more ups than downs. Since this past January things have been great - the odd blip but they are all minor and short lived and again no one by us notices. He has lots of friends and does well in school and in sports. All round normal kid. 3. I will schedule an appointment with an allergist? Is this the right person to check for all of the allergies? We did our allergy testing with a naturopath. It is the IGG testing - delayed food sensitivity testing that needs to be done - ELISA testing. Not the pin prick immediate response testing. Food allergy's can take up to 3 days for the body to react to which is why my son was reacting to pizza day a couple days later. 4. How do I know if he has damage to his basal ganglia? This was my biggest fear!!!! I now believe there has been no damage to my son's basal ganglia as he has been tic free on many occassions - I was sure that the severe onset he had must have done some serious damage as it was a symptom of his body attacking his brain. I think these kids are young and their brains are quick to repair. I do not have any fear of permanent damage at this point. 5. Should I change antibiotics if the tests come back that he does not have strep? If he does not have strep and it is a viral infection or yeast or something else causing his current symptoms there is no reason to change the antibiotics. From my understanding amoxycillin is the best for longer term use - I do know Ronna's son did not respond to it and they used Keflex with success. If he does have strep than it may make sense to try another round of a different antibiotic. That is what we initially did when we switched to Biaxin. 6. What is probiotic? Antibiotics kill the good and bad bacteria. Good Bacteria is important and without it you can end up with a yeast overgrowth and then leaky gut - leading to food sensitivities among other problems. Acidophillis is a probiotic - if you go to a health food store they should have probiotics - I highly recommend going on them with any antibiotic use. It took me 5 months to figure it out. I started it once but saw a slight increase in tics so stopped - for fear of "the alternative medicine' I realize now he was having some yeast die off - making symptoms slightly worse for a short period of time. Rememeber - PANDAS is an auto-immune disorder - I think this is key. There is something messed up with his immune system and that is where to start. Heal him by keeping him as healthy as possible, we started on supplements, no dyes, no junk food. We also found the tv a trigger so removed screens then replaced with LCD screen. You are at the beginning of the journey and there is no quick overnight fix - although I kept hoping for one and wished the antibiotics just fixed him. We have learned so much and I think are all better off from having gone on this journey. Have you ordered Sheila's book from this site? It is a great book as a resource and will help you figure out triggers etc. Please keep asking questions, I am happy to answer.

Hi Mos and Kim, Kim you are amazing with all the info you post...thanks so much! I am still reading frequently but life if busy with three little ones so I am not posting very often - and in general things are going well with my son - he is generally tic free and behaviour is fine - the last couple of days he has had a vocal tic emerge - a hmmm sound when eating - other than that he is fine - we have been sick with colds etc so I am assuming that is what he is fighting and I am not stressed about it as I know it will pass quickly. No other tics. Anyway - just to reply to Mos - we are still on prophylactic amoxycillin - 5 mg once a day - and have been for a year and a half, prior to that we did a 5 month stint on full dose biaxin and amoxyclin - (not both at the same time, alternating) knowing what I know now - I do think that we caused a yeast problem with the antibiotics as we were not using probiotics at the time - at first my son was doing really well then the tics were coming on strong again even while on the full dose antibiotics - I believe now it was yeast related - once we went on a lesser dose of antibiotics ( which I was so scared to do at the time) and we started on the alternative route - vitamins, probiotics, food elimination and no screens - we have seen continued improvement - we have been tic free many many times for extended periods of time - and when tics do emerge they are from an immune response to a viral infection - like a cold (and are usually so subtle no one would notice.) Or...from food exposure although this is happening less - but in the past he would start to tic 1-2 days after pizza day at school - last pizza day there was no reaction. We have not re-tested strep titers for a long time but will be soon - each time his numbers were way off the charts - I have written to NIMH and got some info back but nothing to really explain why his numbers remain high. I am hoping the next time we test they will be significantly lower. We are still planning on taking him off the antibiotics in June after the school year ( yikes!) and see how he does. Scary to think of a strep infection - but I am hoping with his body being so much stronger and a few years older we would not have the same results as our initial strep infection. If he does get an infection then I will have him back on the prophylactic antibiotics and keep him on for as long as I can! Mos - just re-read your post and realize I have not really answered your question - my best guess if that if he does have strep again then the antibiotics are not preventing it from occurring, many people do not feel proplylactic antibiotics work at all - if he does not have strep than I would guess there is something else causing his immune system to react - either an overgrowth of yeast, a viral infection, food allergies which may be coming out more now than in the past - many things could be going on. My son when he is sick often has no 'normal' symptoms, instead he has subtle tics now - in the past they were not so subtle! We have come a long way thanks to the info I have learned from this site. Please feel free to ask any questions after you have read some of my earlier posts. Good Luck.

Hi Evie, As a PANDAS mom myself - I would highly recommend you do the test. It is very true that if you find out your child is allergic to gluten it SUCKS...but ultimately it is info that is so important. My son tested positive for gluten, casein, eggs, and soy. We went off all the foods and I have to say we saw dramatic improvements within days, and not just related to tics, but mood, focus etc. We continue to be 100% off casein, but started re-introducing gluten after about 6 months, we would allow one bread product once a week. He now eats bread daily with his lunch with no reaction. I still bake cookies, muffins etc with rice flour. I have started to introduce eggs when baking - also with no reaction. During our experience we have had 3 significant times where we have seem dramatic improvements. The first when he went on the antibiotics after the sudden onset of symptoms, the second was when we started on vitamins and went off dairy - then gluten, eggs, soy ( all around the same time) and the final one was when we started to treat the yeast overgrowth. My feeling on my son's situation is that the food allergies were a symptom of the yeast overgrowth. And the yeast was due to the use of antibiotics - tons as an infant, and then for 5 months straight after the PANDAS diagnosis, with no probiotic. We continue to use proplylactic antibiotics - and our son is pretty much symptom free. I think you have to get to the root cause - which is the immune system and figure out what is bothering the immune system, if one of the things is gluten - then getting him off it will allow him body to heal faster. It is so worth the time and hassle - and your son is old enough to understand - and identify any differences on and off gluten or whatever other foods. I am the last person who would have ever believed that dairy, gluten etc. was contributing to our son's illness - but there is no doubt in my mind that it was. Good Luck.

Hi Kim, We did a hair test for metals. Regarding casein - yes he is 100% off, or as close as we can get. He was allowed the pizza at pizza day - but that was an exception. At home it is 100% all the time. At hockey practice he sometimes gets a snack with milk ingredients which we now allow - we did not for a long time. I do a lot of baking, and when he does get bread it is always milk free. He did admit the other day that on a class trip he had a hot chocolate - and we saw no reaction. So, I cannot prevent the odd time but am happy that he is managing the odd milk exposure fine. At home he drinks goats milk. I really do think the yeast issue has made a huge difference in how he is managing the food sensitivities. Even now when it is clear he is starting to come down with an illness there are no tics and no emotional lability. I talked to my doctor today and we are talking about taking him off the antibiotics at the end of the school year and seeing how he does. Marie - hang in there. Remember this will pass as well. Wishing for you all that it passes quickly, although it is nice that it is not bothering your son too much.

Giselle, We have not ruled out Celiac - because once we got the results of the IGG test we went off all gluten and the doctor said to do the celiac test he would have to be eating wheat for an accurate test. My middle son had even more sensitivity to wheat and we did do the celiac test on him and it was negative. He has no tics or other issues other than being a very picky eater. He is also off all casein - and I try to limit wheat but it is hard to be 100% with him. I am happy to report we went to ToysRUs and had no problem. The smile on his face as we pulled in was incredible. Walking towards the store he did 2 throat clearings, obviously from excitement, and when he went in I noticed his eyes look down briefly - I was watching like a hawk Within a minute at most there was nothing - and we stayed for a good hour. No tics after either. So another success. We are feeling so confident that I think we will try a movie later in the week. Only problem is the baby is still sick and the other two started with a cough this morning. I will only go to the movies if there are no other issues. Claire it is so nice to see you pop in a little more. I know how much you helped me and I know the newcomers will find your advice so valuable.

Hi Sunshine, Sorry to not reply sooner - we have had a crazy few days with the baby being quite sick. Anyway...your experience sounds so much like mine was early one - improving on antibiotics and deteriorating off antibiotics. Ultimately, I asked to remain on them prophylactically - so we have been on them prophylactically for just over a year - and prior to that on and off them for 4-5 months, mostly on them. I do think we ultimately exchanged the strep infection to a yeast problem, which is why ultimately he started to deteriorate even on the antibiotics prior to going to the prophylactic dose. For us - the IGG testing - then removal of casein and gluten, was when we saw the first significant improvement, within the week we saw a significant reduction of tics - that was a year past January. He still had ups and downs but nothing like the first few months. The next big step of improvement has been since this past December when we increased and changed the probiotics we were using to treat the yeast. He has being doing amazing since then. He had a cold early this week, full on stuffy nose etc - NO TICS, no emotional lability, I used to know he was fighting something as he would have subtle tics emerge, I was so surprised ( pleasantly) when one morning he was flushed and had a terrible cold. I do think the key to PANDAS - is the IMMUNE SYSTEM, which is why it is part of the title! The immune system is not just about strep - but all the other things that could be bothering the immune system, including allergies, yeasts etc. So - to answer your question I would think he could be a carrier and not have such big issues if the rest of his body is in check. Doris Rapp talks about the barrel theory - your immune system is like a barrel, and it can take on so many things and then finally it will overflow - so prior to the strep causing the barrel to fill up and overflow the foods etc were not such a problem for my son, but now that his barrel was full to the top we needed to work at reducing some of those things filling up his barrel. She also talks about how sometimes an infection is the equivalent to a hole in the barrel, so even if it was not already full, it starts to leak. I like the analogy. Now my son has been able to manage wheat without any tics and the pizza last week with no tics - this shows me his barrel is not very full so these things are not causing it to overflow. Simple analogy but I find it powerful. I hope I have answered some questions - I am running on not very much sleep - but did want to respond. I know how much I waited and hoped to hear stories from others as to how well their kids were doing as it gave me such hope. I do hope that our story gives you hope. Just as a brief rundown - things we have done for our PANDAS son removed all screens - replaced the tv with an LCD - limited his use of this, but now he has no limits and no tics while watching - in January he saw a movie on a regular tv with no reaction started supplements - originally he was on lots - B complex, cal, mag, zinc, fish oil, l-taurine, vit C, multi, (can't remember the rest.) We have reduced his supplements significantly - takes muli, b complex, 1 fish oil ( used to be 8), l-taurine in the morning and then a probiotic at lunch and at dinner. tested for pyroloria - which he was positive for - had supplemented more zinc originally - he eventually rebelled against all the supplements so we eased up on them with no ill effect - he had rebelled a few times before and we would ease up and tics would come back within a few days to a week and he would ask to go back on the vitamins. He has been on the reduced amount since probably September. tested for metal - no issues tested IGG - positive for casein, gluten, eggs, soy, - went on a very restricted diet eliminating all of the foods - tons of work but soooo worth it. tested - OAT test - high in yeast, treated yeast more aggressively My son as I have said is doing amazing - tic free - 100% most of the time, when there are tics, they are so subtle that no one else would notice them - He has a much better diet now than I could have ever imagined - he was such a picky eater. He looks so healthy now. He is well rounded and does not seem to be worse off as a result of the PANDAS - I would have to say he is better off - as I have said many times, he is now able to reach his real potential - we uncovered things we would not have had we not had to go on this journey - and not just things related to him but also his brothers. Try and keep as positive as you can - I know it is hard at times - I also felt like I was losing my son to this horrible illness - I hated everything about it and was not good at just accepting it. My advise is to keep researching and fighting for what you think is right for your son. You will put your puzzle together - slowly but surely and it will be so worth the time and effort. Good luck tomorrow with the naturopath - looking forward to an update. Ronna - so nice to "see" you - so glad Kurt has had a good winter - with the new baby you must be so glad of that. I was interested to see you put him back on prophylactic antibiotics - we are at the point of considering going off the antibiotics this summer - I am scared to do it but feel it does make sense. I just have such a fear of a relapse like his original onset - and probably an irrational fear of him not get better if that happens - although I know there has been no permanent damage to the basal ganglia from all I can tell as he has been tic free more often than not.

Hi Kim, Thanks... Our new probiotic was bought from our naturopath and I believe it is only available through Naturopaths - I think she said it has been developed by several PhD's from several Canadian Universities. It is called NFH - Nutritional Fundamentals for Health. 10 different strains. We try to give 2 a day. Next trigger test will be going to the toy store during March Break. He had a terrible reaction that first December at ToyRUs - and has not been back since. That was when we made the connection to the lights - thanks to Claire pointing it out. He is also desperately wanting to go to the movies - so we may even give that a try - he has missed a few parties that took place at the movies - so it would be nice if we could test that trigger and maybe he would not have to miss the next party. One step at a time.

Hi Everyone, I have not been posting much lately but still check in daily. Things have been going really well for us. I really do feel that the yeast issue was the final corner piece of our puzzle. We have been treating yeast more aggressively since December - my son is still on the antibiotics for PANDAS. Since December - when my son was doing quite well but still had ups and downs - he has been doing very well. I think in total he has missed one day of school - he has been tic free (100% to all others, and close to 100% to me - 100% most days but I know if his immune system is fighting something -but again, it is soooo minimal) - has been staying for lunch every day, not missing any hockey, has been happy, doing great in school - all good stuff. He has also been eating some gluten daily with his school lunch without any problem - we pretty much stick to gluten free on weekends and every other meal. We do 100% casein free, and I still bake all cookies etc gluten free. Last Friday was pizza day - the last two pizza days in the fall he had tics surface within 1-2 days and stay for a week. I feel safe to report there was no reaction this time. Don't want to jinx it. I am so thrilled that he has done so well - not that he will start to have pizza once a week - but to me this is such a huge step for us - no reaction to pizza!!!! I will feel less stressed when he does go to party's etc. where there will be pizza. This may seem an odd thing to come back and post about but it really shows me how far we have come thanks to all the things I have learned from this board. I was watching some old home movies from the December I found this site - just over a year ago. My son was filming and talking and I could hear him gasp almost every 5 seconds. I did not even remember this tic. This journey has been long but looking back it went soooo fast. My son looks like such a little innocent boy in this film - he has grown so much in a year. He looks the picture of health now - bright eyes, confident, I am so proud of him and how he has handled this journey. Thank you all for helping him become who he is now - still a little boy, although he will be 8 this year. I really feel he now has the opportunity to reach his full potential. Words really cannot express my gratitude to all those who have supported me and guided me through this.