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Hi Brett, I fully understand why you are trying the new antibiotic. In my experience we saw a difference in 3 days - over time though with extended use of full dose antibiotics - I think yeast did become a problem. My son was on full dose antibiotics for almost 5 months with no probiotic. The test we did was the great plains oat test. Claire also posted about a spit test - if you do a search on that - you spit in water first thing in the morning before eating or drinking, or brushing your teeth - and if the spit has stringers (like legs) there may be yeast - if it floats in one glob it is fine ( I think) If you do a google search you will be able to find more info as well -including pictures. I think chemar may have put in a link once to a site - so you could also do a search here for spit test. Marie has also mentioned just the look of white on the tongue being an indicator - we all probably remember this from when our kids were babies - only one of mine ever had yeast - and his whole tongue was white. For treating yeast - I think probiotics is one way - reducing sugar is another - and nystatin seems to be the prescription route - Marie has also mentioned something she uses in a recent post - can't remember the name off the top of my head. For Mercury we did a hair test for heavy metals - I think there has been some discussion about it not being the best test - due to how kids excrete the metals - I can't help you on this one - but again - if you do a search on this site you should be able to get some info. Probiotics should be given 2 hours after before or after antibiotics - I always wait a little longer to be sure. Antibiotics kill both good and bad stuff - probiotics helps make sure the good stuff remains. Very basic explanation. Your son may still have PANDAS even if he gets worse on antibiotics - he may have issues with yeast and have PANDAS - so don't rule it out - in the end the diagnosis in a way does not really matter - what matters is you get the the route cause of it. I saw you had posted a question to Claire - just to let you know she does not post here anymore - other than on a rare occasion - we all miss her tremendously - I know I do. She was an incredible support to me - and I credit her as well as others from this site for getting us on the right track. She has moved on to focus more on her own busy life - I can only imagine the countless hours she spent helping others here - and taking away from her home time. We are lucky that her posts are all accessible - so I would just keep reading and learning. When you say your son does not have a good diet - does that mean he has a limited diet? My son had a terrible diet - until we went off the foods he was allergic to. He eats quite well now - willing to try new things. I am amazed how much he has changed in his eating habits since last year. The no tv is definitely worth trying - Claire always cautioned about trying too many things at once, as the kids/parents may be unsure if tv was actually the trigger - if they get better off tv and on supplements for example - the kids/ parents may assume it is just the supplements that have helped. Although - sounds like your son is on board - and I understand wanting to do everything at once to make this all go away. Glad you are hooking up with a naturopath - it really helps to have some guidance - I liked just knowing doses were correct etc. Looking forward to updates.

Hi Ronna, Hope you will get some rest tonight - so glad the baby is feeling better. Thanks for the info on the book - I will look out for it. There is no question food is an issue for my son as well - even my middle son with no issues - when on soy milk became a terror - and his test ultimately showed an allergy to soy. And the baby became miserable when he started on homo milk - crying and not sleeping. I am glad to hear your son can tolerate pizza now periodically - I am hoping to get there sometime too - As always I go back to the bucket theory - I would guess if I had not had the flu and my son was not already fighting that - that he may well have managed the pizza with no ill effect. This summer he had pizza once - within 1/2 hour he had some eye tics but they were gone within a few hours - and they were subtle and infrequent - I would guess his immune system was stronger at the time so managed the "assault" with little and short lived ill effect. Wishing you many hours of sleep in a row! PS - it was a bowling party that my son had pizza at last week - other triggers there were the lighting and the computer screen for points. Part of me wanted to just take him home when I saw minor twitches - but he was so happy - and I do want him to have good memories as well. No one else noticed the twitches but me. I need to relax a little.

Hi Marie, Is Perils bought at a health food store? As I just wrote on another post - my sons' tics were on the increase today - they had been decreasing steadily over the last week, and very close to gone last night - pizza day was yesterday. I really think his immune system has been on overdrive so the pizza put him over the edge again. I knew it was not a great plan to have him eat the pizza - but he loved it so much and was soooo looking forward to eating "real pizza" like everyone else - and I do think that is worth something - since the effects are somewhat short lived. He did say tonight he noticed the habits get worse today and that maybe next pizza day he should take home made pizza like he did last year. He played hockey again tonight - and as he was going to bed - there were limited tics - vocal throat clearing - much better than a week ago, even with the slight increase today. Thank you for your thoughts as always. Hope your son is also doing much better. As I always say - this being a mom thing, is hard work.

Hi Mommaonamission, Just want to reply regarding the pizza issue - for my son - he tested very high in his IGG test for casein - and all milk products - so I think it is the cheese that is the issue in triggering his tics - as he does periodically (more often recently) have wheat with no ill effects. He has no milk products in normal daily life and has not since last January when we did the test. Interestingly - his tics have increased through the day today - after being on the decline daily for over a week - the pizza day was yesterday - not sure if the pizza is the cause of the increased today - or a possible growth spurt ( he ate tons tonight for dinner) or watching more tv than usual with Saturday morning cartoons - or a combo of all three. We will see what the next few days bring. The good thing is - I know they will go away. Still a learning game for me even after almost a year at this! By the way - You do not have to cut out pizza for your son - My son has it at least once a week - but I make it - Gluten Free, Casein Free dough - and I put mozerella goat cheese on. He loves it - and it is actually really good - we do a pizza night usually on Friday. The pizza he has had over recent weeks is a new trial - one at a party ( usually I take my own) and once at school ( last year I always took my own for him). I am trying to draw that fine line between allowing him to be a "normal" kid and wanting to keep him in a bubble. Hard line to draw!

Hi Brett, You might want to do a search for posts from Heather -I think that was her name, she posted before I came here. Her son also had PANDAS - I think, and got much worse on the antibiotics - I think in the end it was the antibiotics aggravating a yeast issue - the colouring in the antibiotics can also aggravate some kids . Maybe in the past your son may have been able to handle these two triggers, but him immune system is in overdrive. I think ultimately Heather's son got much better after she treated him for yeast. I do not remember all the details but do remember he got much worse on antibiotics the way you are describing. Ronna - sorry the baby is sick. You must be exhausted. Thanks for your reply to my other posts. I am thinking more and more of the yeast issue - I think nystatin is something the ped. prescribes - so I will have to talk to him.

Great news! Wishing all of the American's a Happy Thanksgiving. Just as a quick update - my son continues to improve - we did increase the probioitic yesterday - so don't think that would have made much of an impact yet - but we will stick with the higher dose for a week - I do think whatever his body was fighting is working it's way out - and the added stress on him immune system due to candies etc did not help. He stayed for pizza lunch today ( I struggled with this - but he really wanted to - and I had told him at the beginning of the year - he could have pizza at parties and on pizza day - once every couple of months) It will be interesting as a test though - if he goes down hill in a few days - it will be a pattern - with hope he will continue to just get better.

Thanks Andy for the info. Wishing your son all the best. Look forward to updates - and I do hope you have got the final piece! What a journey you have been on.

Hi Gary, Chemar's posts are the one's you should look out for - you can do a search for her one on "what helped my son" She has a list of the supplements - and she has had amazing success after taking her son off presciption meds. Many have also had great success with food elimination.

Thanks Andy - I think I will up the probiotic - and give two a day and see if we see any change - I assume (hope) with or without the extra probiotic things should get better - but I would like to speed things along. I do not know anything about charcol as a supplement- any info would be appreciated. Also - what prescription are you doing in the New Year - and is it just for yeast - and why are you not starting it earlier? Are you trying to get the yeast to a more manageable amount in hopes of their being less die off?

Hi everyone, I had a question - as you know we have been having an increase in tics over the last week - since last Thursday - the worst increase we have seen in a very long time ( although I do keep telling myself we are in a much better place than where we started). While the tics are decreasing they are still present ( mostly vocal - throat clearing that sounds sore - worst at bedtime - they increase as the evening goes on - the teacher has not noticed anything other than some throat clearing during quiet reading time. Thanks to the info from Andy and Cheri I started to think about the yeast issue - with the Halloween candies. I do think there are many variables involved - fighting a flu that I had, growth spurt, pizza and cake party - after being on a very clean diet - and the candy. I did do the great plains testing - but got the results back at a time he was doing really well so I did not look at them closely ( they are difficult to understand - unless you know all the terms) - and the naturopath just told me to keep doing what we are doing. Looking back at the test results it seems yeast was a bit of an issue - which makes sense since he was on 5 months of antibiotics with no probiotic. We now religiously give him probiotics daily - since he is still on prophylactic antibiotics. My question is really - if part of this increase in tics is an overgrowth of yeast - would it make sense to increase the probiotic to 2X a day - this dose was fine with the naturopath in the past - so I am not worried about it being bad for him - we decreased to one and he had been fine for many many months. I just wondered if the extra probiotic would help with the yeast ( sorry if it is a dumb question) - I would hate to make him swallow a pill if it was doing nothing. I still feel like a beginner in so many ways. What other things can I do to help with yeast? I did start giving him clariton incase it was an allergy irritation causing the tics - he has been on it for 3 days - in the past when the tic is allergy induced we usually see a significant improvement by 24 hours and within a few days it is gone - so I will probably discontinue the clariton. I keep looking at his throat to see if it is red - I may just take him to the ped if he is not better by the end of the week. I hate going there though and risking him getting some other illness from the waiting room. Thanks in advance for any advise. PS - I really hate this!

bumped for the newcomers. Some great info on no screens, food elimination and many other things. Claire - if you are lurking - you are so missed! Wishing you and your family all the best.

Hi Brett, I am glad the results from his testing at the hospital were normal. I am also glad you are going back on the antibiotics - my opinion since you have asked - is to stick only with the antibiotics before adding any other drugs - if it is PANDAS - than they should help a lot - keep in mind though that amoxycillin does not seem to work for all kids - we at one point changed to Biaxin - my son is now on amoxycillin prophylactically to prevent any further strep infections. Remember the tics are a symptom - the "brain drugs" treat the symptom not the root cause. Had I gone the route of "brain drugs" then my son may not be ticcing - but the underlying problems would still be there - instead we got to the root cause and corrected it. I am so glad we went the route we did - these kids are young and their brains are still developing. I do however understand why people resort to the drugs - and don't judge them for doing so. We all have to do what we feel most comfortable with - and had my son not improved with the antibiotics - I would be the first to admit I would have put him on drugs because he was not functioning. Marie - so glad your son is doing better - things are still improving here - he was at school all day - by evening he was making a wheezing sound. He said his throat was a little sore today. I too am looking forward to the holidays - we have so much to be thankful for. Last year was really difficult - my son got a terrible neck tic a few days before going to see Santa - and he soooo wanted to still go - so we did, and I held back tears as I watched him with Santa. This slight wheezing is really not a big deal in the grand scheme of things.

Hi Brett, Wow our stories are so similar. Only have a second to write - my gut reaction is yes he should be on antibiotics to get to any possible infection. I do wonder if amoxycillin is not the right one for him though - as was Ronna's experience. I think that if the antibiotic is working then by the 72 hour mark you should see marked improvement as we saw with our son. Is your doctor open to humouring you and trying another antibiotic? Perhaps if you go to him with the new info you have from my experience and Ronna's experience he might be more willing. That is what I did with my doctor, as he no longer wanted to give the antibiotics as there were no signs of active strep - but I convinced him with the info I had. Good Luck.

Hi Brett, With the further info you have given it does sound more like what we went through with our son. We did the food allergy testing through a naturopath -(in Canada) it is IGg testing - for food sensitivities - delayed reaction - not the immediate prick testing. Our son was also a terrible eater so we did start supplements - but I really think the biggest impact was the food. No screens also really helped - we gave our son money as a reward for each day he did not watch the tv - he is 6 - so was thrilled with 2$ a day - it was interesting as after teh 10 days he was close to tic free so with his reward money we went to toyrus - we walked in the store and all of these tics started up - i assumed he was excited - it was after posting here about it that I realized it was the lights in the store - as later we went into a baby store where there was flourescent lights and the same thing happened again - and then we went to a toy store with incandescent lights and he was fine - so it was not the excitement. You might want to look into PITANDS ( which my son also has) Pediatric Illness -triggered auto immune disorder associated with strep - meaning tics are triggered not just by the strep but by any illness. Again I think it all goes back to the immune system not being strong. I think you are probably right to be cautious around the meds for such a young child - I am lucky that we never had to go to that and that the antibiotics worked well enough - although I understand giving him the meds. The other trigger I am seeing with my son seems to be growth spurts - my doctor told me a few weeks ago the new age of puberty is actually 8 for girls and 9 for boys YIKES!!! Tics from what I understand can get worse during puberty - wonder if there could be any connection there as well? A couple days ago I bumped my thread New Here for Sarah - you may want to read through it to see if anything there is helpful. I will keep an eye out for your posts - I do read most days.

Hi again, There has been a lot of success by many on this forum including myself - of eliminating all screens - tv., video etc - that was a CLEAR trigger for my son - he would tic uncontrollably while watching tv - Claire who used to post here advocated the kids be off ALL SCREEN for 7-10 days to see if there is a difference - most found there was - we also found driving in the car a trigger - all things related to photosensitivity. My son now watches unlimited LCD tv - we do try to somewhat limit it - but not like the beginning where he got to watch for 15 minutes. There had been a list of triggers somewhere on this site - and sometimes an obvious trigger is easily missed until it is pointed out. My son still reacts to flourescent lights - due to his photosensitivity - not nearly as badly but the school accommodates by having the lights off in his classroom. Isn't it like some switch was turned and all of a sudden you have a new kid - and wish so much for the "old one" back - you will get him back - and better than ever. Maybe there were several triggers that just saturated him. Did he have any difficulties at all prior to this? While my son had a sudden and severe onset of tics - the years leading up to it he had a chronic cough - which we assumed was a transient tic - so many boys have transient tics - anyway - through this journey we have discovered that he had many food allergies - and once he went off the milk his cough went away never to return, it has been almost a year now with no cough, and his cough was chronic for 3 years - and I mean chronic! He was also a bit of a challenge to parent, can't really put my finger on what it was - but he was not easy going, and once off the foods - he became a joy to parent, his focus improved dramatically in school - we found so many benefits - more than just resolving the tic issues. I guess what I am trying to say - is that maybe there have been other triggers present as with my son - which were managed by his body until the onslot of the strep infection. Maybe there are other things like the tv which are now triggering him when it did not before as his body was not under the severe stress it is now. Someone wrote to me early on in this journey of mine that the Immune System Is Key - I really believe that is true when it comes to any kind of tic syndrome. The tic is a symptom of something bigger - a message that something is not righ. Your job is to figure it out. My advise as mommaonamission said, was keep searching until you find the right answers - if I had just sat back and listened to the doctors we would be in a very different place than we are now- I have been lucky to have great doctors who were open to me showing up with pages of anecdotal info - I was on a mission - and it was worth every second of my time. Research all you can and you will find the answers. The woman who runs this site has just published a book which you can order at the top of the page - I got mine last week - and it is a great resource for parents - very clear and easy to understand - not full of medical jargon. I do really recommend you cut out the screens - you have nothing to lose in trying and it might give him some relief. Mommaonamission - did you decide to cut out the screens?

Hi Brett and welcome...so sorry to hear about your son - my first thought was PANDAS as well, due to the sudden onset of the tics - and the change in mood/sleep etc you are describing leading up to it. What blood work did they do? There are two for step - Was it for strep? or did they just do the throat swab? Sometimes the swab is negative even though strep is there. Ronna's son who has PANDAS did not respond to the amoxycillin but did respond to Keflex. Perhaps you could clarify if they did the strep titers test - as I guess that would rule out PANDAS - but could there be another illness that is triggering it? Maybe it is worth trying a different antibiotic? When my son had the explosion of tics he did have tics all over his body all at once - it was horrific - non stop - more than one a second, complex motor and vocal tics. He did not tic when sleeping - I would know the minute he was asleep as he would stop making sounds. I know how horrible this is for you and your son - the unknown is so difficult. I am sorry I do not have much in terms of advise - but I wanted to respond to welcome you. I am not sure if it would be worth you getting in touch with NIMH - I have done this once before - sent an e-mail - and did get a response that was helpful - they did not give out specific medical advise but gave me some good resources. All of the symptoms sound so much like PANDAS. Not sure if Ronna is checking in - and if her son ticced while sleeping. I have no experience with TENEX - but understand the wish to try something to help him. I know the feeling of helplessness as you watch your child become a different child before your eyes. My thoughts are with you and him.

Daniel - sounds like you have put a lot of good things in place and I am so glad your son had been doing so well - sounds like the illness is the clear trigger for his current tics - to give you some hope - over time with each illness my son's tics became less and less - this last week has been the worst outbreak in many many months - but I think there were several variables at play - but the general rule has been with the tics get milder and last less time, and there is more and more time between the increases in tics. Hope this is the same for your son. Marie - hope your little guy is still improving - things continue to be getting better slowly but surely here - certainly there is no hmmm every second - like we had last thursday - and he did go to school this afternoon. Still have to remember that even these last few days, while I felt they were bad - mostly because it was so frustrating to be taking 3 steps back rather than the usual one step back, I would have wished for days this mild during those first few months! Sarah - hope you and your son are hanging in there.

Marie, So glad to hear your son is doing better - you must also be feeling better. Amazing how we feel cruddy when our kids are not well. My son is also much improved - he is home for the morning because he slept in - I never wake him up if he is sleeping - I figure he needs the sleep. Daniel - what great news to hear how well your son has been doing over the last few months - I had wondered as we had not heard from you - I like to assume no news is good news. I am sure your son will be on the mend soon too - sounds like the virus took it's toll. What changes did you end up making that you think contributed to the 4 months tic free? I know your wife was reluctant about supplements etc.

Hi Sarah, Glad you are starting the journey of getting your son better - it is overwhelming at first but it is amazing how much these kids have in common and how much we can learn from each other - regardless of the tic syndrome the kids have - diagnosed or not. It all seems connected to the immune system. I have often talked about the bucket theory - and there is so much the kid's immune system can handle then it just overflows - I think the tics come when the bucket is overflowing. I would really recommend the no screens for your son after re-reading your post on the movie experience. That may be one of the things that he could handle before but now that his bucket is overflowing with the strep infection he is no longer able to tolerate it as well - it may give him much needed relief. I liked doing the IGG testing for food allergies as I wanted to be sure - I have read others (giselle I think) who did an elimination of wheat and replaced most wheat products with corn products - her son got worse and in the end tested positive to corn as well. Another one to keep in mind it to be careful not to replace dairy with soy as 30% of kids allergic to milk are also allergic to soy. We had put all the kids on soy when we first went off milk - my middle son who has no tics/behaviour problems started having tantrums and being impossible - and having accidents - we did the food testing for all three kids just to see how they were - the middle one was highly allergic to soy - again I was amazed how food sensitivities can result in behavioural changes. Good Luck - looking forward to reading updates.

bumped for Sarah

Sarah - my son is now 7 1/2 - we do not know exactly when his strep occurred prior to the explosion of tics - as he did not complain about a sore throat other than in passing about a week before. He tested positive for it and had high Anti Titers ( blood work) The blood work is the real indicator of the strep having been present. Sometime throat cultures do not show it which is why it is important to do the blood work. Your son is at such a difficult age to be going through this - Marie and I started here around the same time and I remember e-mailing her about how lucky it was our kids were 6 - they seemed oblivious to it all as did their friends. There is a light at the end of the tunnel, and a silver lining - I would never have believed it myself - but those mild tics I learned to get used to as you say you are as well, have now all gone ( most of the time) there are no more chronic coughs etc - and had we not had the PANDAS experience he would still be coughing and drinking lots of milk. Also wanted to point out the movie trigger - Claire advocated that parents remove all screens for 7-10 days to see if it helped - for most kids it did - for a 12 year old that may be hard - no computer screens, no game boy stuff - but considering how he hates the tics he might be game to try - we have our son money for every day he did not watch tv - Marie is right about not rushing with supplements, I learned the hard way - go slow...I know it is easier said than done... Marie - hang in there - things will get better - my son is doing better - I did keep him home yesterday all day and tics today were more minimal, less frequent and more subtle - he did go to hockey tonight ( probably a mistake) It was a late night and there was a lot of throat clearing going off to bed - but I would think a good night sleep with get him back on track.

Hi Sarah, It is me that they are talking about...I read your posts this evening and planned on replying but had to go to Hockey - and am just back and have a minute to post. I will bump up the thread I started when I first found this site - I have gained valuable insights from all those who post here - and so much support. I think regardless of how good your friends and family are there is nothing like feeling understood by another mother (or father) going through something like this. Ronna's posts were the one's I focused on initially as her son also has PANDAS. She has posted so much great info on the medical info related to PANDAS. I followed Cheri ( chemar's) info on supplements, I printed off her post and went into health food stores trying to educate myself - this was all new to me. Claire (who has moved on to greener pastures - has many amazing threads and info - so keep an eye for her posts as well) Anyway...trying to keep it somewhat short - you can read more details on the bumped thread called New Here. Your son does sound a lot like mine. My son started with a chronic cough at 3 - we had recently had a new baby - and after several weeks of coughing we took him to the doctor - she said it may be a transient tic - new baby jealousy - behavioural type of cough. We thought fine and that was that - the cough continued. As a side bar he had chronic ear and throat infections from 18 months to 2 years - and several prior to the 18 month mark - his first requiring antibiotics was at 6 months. He had ENT surgery at 2 and was never sick again - or so we thought. Our PANDAS overnight sudden explosion of tics happened a few weeks after he turned 6. During the 3-6 year the cough never went away - it drove me crazy! He also would have occassional sniffs, eye blinks, very minor that no one would notice - even the cough no one noticed - all of his symptoms would easily be dismissed by others as allergies. During this time he did not miss one day of school for illness - he had a very limited diet - ate ketchup sandwiches for about 4 months for all meals - but he drank lots of milk so we thought that was at least good. He is tall for his age, a good weight, sociable, lots of friends does well in school. When my son was almost 5 we changed pediatrician for issues related to her care of our second child. When we met with the new doctor my son was blinking at the time so I raised it to him and said I understand he probably has transient tics - he looked in his eyes and they were very irritated and red - he suggested it may not be tics but an irritation - he gave him antihistime drops and the eye tics were gone within a day or so. He also wanted to rule out the cough as anything else - so he put him on biaxin in case there was an underlying infection - after three days the cough was gone, for the first time in so long - we were unable to get the rest in to him and the cough came back - we tried amoxycillin and the cough remained. So we lived with the cough but I kept wondering why the biaxin made it go away. The summer he was turing 6 his cough was getting quite bad so we had him see a asthma specialist - he was too young to do the proper tests - so that was inconclusive, we were starting to see more subtle tics at this time, finger movements - I tried to ignore it - that was hard. Then in late August we were at the cottage for a few weeks - his cough was getting so bad, like a gasp - he also had a shift in personality, lacking empathy which is very unlike him - he was getting up during the night to put on his music -which he liked to fall asleep to. He seemed restless - nothing was fitting him right, ( he always hated tags - and was particular about clothing, but the clothes that were usually fine were no longer ok) he complained about being no good at anything, terrible at riding his bike etc. I took him into the doctor on a Monday - saying I don't know why I am here, he has no fever, no symptoms of illness but something isn't right. I described how he was at the cottage - and I remember clearly saying, I get that he has tics, I am learning to accept that but I just don't want to be missing something bigger. He asked about his throat if it had been sore, I said no - although later we remembered one night him telling us his throat was dry. He looked in his throat and it was red, he did a culture which was also positive. He told me about PANDAS - of note is that the time we were at the doctors office tics were emerging, one's I had not seen before - I spent about an hour at the office - and in the end the doctor said he through he might have PANDAS and we could wait for the results of the strep or go ahead on antibiotics - he is not one to give antibiotics out easily. I opted for the antibiotics - we gave two doses that night - the next morning when he woke up I could not believe what I was seeing. There was nothing subtle about the tics - we could not take him out in public - we cancelled a park play date - I was horrified - tics I had never seen on anyone were happening, complex motor and vocal tics. I called the doctor who said he suspected it was PANDAS even more now and that I should give the medicine 36 hours - the next day he was still terrible, and the next day still terrible, school was starting in a week and there is no way I could send him - like a miracle by mid afternoon tics diminished 80% - during the remainder of the 10 days essentially all tics were gone except for the cough - which I vowed I would never complain about again! Unfortunately tics came back after a week off antibiotics, then back on them things got better, then worse one's off them - eventually I convinced him to keep us on them until we sorted things out - we saw a child psychiatrist - who agreed with the PANDAS diagnosis - and did not prescribe drugs, we saw a neurologist who was the same, and the infectious disease clinic who just gave the go ahead for the prophylactic use of antibiotics. It was now the end of December and he was still ticcing alot even on antibiotics - they would get worse when one of his siblings was sick - so PITANDS seemed like an obvious diagnosis - pediatric illness triggered auto-immune neuro-psych disorder assoc. with strep. We started to look outside the box over Christmas - and that was when I started to take the natural approaches more seriously - I had hoped the antibiotics would do the trick - and I have never been into alternative things in general so this was very new to me. I love your post name because I know that I was a mom on a mission myself. I would go to the doctors with pages from here printed off - anecdotal was all I had - there is very little concrete info on PANDAS research as it is so new. Anyway....sorry for being so long winded - ultimately I believe the immune system is KEY!!! There seem to be many trigger which are common for many of these kids. Food allergies are one - I would never have believed my son had any food allergies/sensitivities as he did not have what I would consider the normal signs of this - upset stomach etc. For fun I took him off milk after seeing it as a common problem and knowing how much milk he drank, consumed - within a week the tics decreased significantly, we had also started supplements so I assumed it was that that made things better - so we let him have milk again - then he got worse within a few days. So - we did the IGg testing for food sensitivities just for some answers - he was highly allergic to milk, gluten soy and eggs - we have taken all of this out of his diet - and seen amazing results. Another clear trigger was the tv - we initially limited then removed it 100% this also helped - we have an LCD tv for him which he can watch without a problem. Flouresent lights are a big problem still for him - his classroom lights are off for him, but if we go somewhere brightly lit within about 15 minutes his eyes start to bother him - he is managing better as he used to go into full tics - Movies are not something we have done since the PANDAS - but a few weeks prior to the onslot of tics he did go and see the YuGiOh movie, and his throat clearing/cough was really bad - non stop and much louder than normal - so it was obviously a trigger. We have been supplementing - but have reduced the vitamin regiment significantly in recent months - he eats really well now. Ronna has had the experience of Amoxycillin not working for her son - I think Keflex is what works for her son. If he does have strep he NEEDS to be on the antibiotics for the full course to kill the infection ( although I think there was a poster before me called Heather whose son got worse on the antibiotics because of yeast problems) Giving a probiotic is important - I did not do this for the first 4 months - (thought it was too alternative - why wouldn't the doctor have told me if I really needed it) Currently my son is doing amazing ( minus the last few days were we have a down turn - but it is getting better - and is no where like those first 4-5 months) Illness does trigger tics which are usually very subtle - of note is that once we went off all dairy his chronic cough went away and has never come back - so it was an allergy - not a tic. He goes for many weeks 100% tic free - then when his immune system is struggling he gets very minor tics - slight eye squint many 3 times in a day - nothing anyone would notice - but me of course. Other things that happened when he as sick early on - ADHD type behaviour - lack of focus, separation anxiety -which plays out for him in his fear of dying and others around him dying - and deterioration of handwriting and emotional lability. Not sure if this has been helpful - somewhat therapeutic for me to think what a journey we have travelled. Please ask me any questions you have - I would be happy to answer. It does sound like PANDAS is a real possibility with the explosion of tics you are describing as well as the strep infection. Hang in there, I know the shock and heartbreak of watching a child tic - when it is an indicator that something is not right. You have come to the right place for support and information.

Hi Cheri, Jeff and Marie, I had thought of Halloween as a possible trigger, but had somewhat dismissed it probably prematurely. We had initially planned on buying all of his chocolate candy from him and then he could buy a toy with the money - he was game with the plan until he had all the chocolate in front of him and the deal was off! We then allowed him to have one small chocolate bar a day after school and one candy (jelly beans etc, gum) After a few days with no ill effects he wanted to know if we could still do the deal as he had a toy in mind - and I guess decided it was worth giving up the chocolate. So, he ate no more chocolate and got his toy ( I enjoyed all his chocolates) - I had dismissed any concerns around just the elevated sugar and colours etc from the non milk candy - until reading your posts. Again - sometimes the obvious is not so obvious until someone points it out. Cheri - I hope your son stabilizes soon - his story was very moving in the book - I had not known as many details until reading the book - what an incredible journey you have been on. I am so grateful for all the you are willing to share and all the time you put into supporting others. Marie - Hope your son is already on the mend, I had considered clariton myself today but decided to hold off - he says his throat feels a but funny. He has a humm still today - but it was not as constant - it did get worse as bed time approached which is common ( worse as in more like yesterday). Eye Squints were better today than yesterday - so all in all I think he has improved - I am going to try and coax him to stay home again tomorrow. He loves school and recess so much it is hard so we may do a half day. Through all of this his hand writing has been perfectly fine and just a slight amount of emotional lability. I have to keep reminding me how much better he is now than when we first started but it is hard to hit a bump in the road.

Hi Marie, This is cosmic - again we are going through something similar. I too have not posted much although read daily - and reply when I can and it seems it might help - my son has also been doing amazing and I have been meaning to put aside some time to update on my original thread to give PANDAS moms some hope - he has been tic free for quite some time, doing amazing in school, no behaviour concerns and the most minor tics that do come are clearly related to an illness and I usually have him stay home for a half day and they go away completely. The minor tics he has had over the last few months are one's no one else would notice they are so subtle, no vocal or complex tics - just minor eye squints, maybe a couple a day and they come every couple of weeks. He is currently only on a multi, B combo and L-Taurine, and probiotic as he is still on antibiotics. I was planning on stopping the b complex and l-taurine once the one's I have run out. He is eating wheat a couple of times a week - in the form of a bun or piece of bread - I still bake a lot and he is generally gluten free and always milk free - until this Sunday at a birthday party when I let him have whatever he wanted - so he had 2 big pieces of pizza and some cake. The other thing is last Friday/Saturday I was quite sick with a flu - in bed sick. So....I have two working theories on the current increase of tics ( the tics consist of a pretty constant hum, throat clearing, this evening it was once a second - and he has had no vocal tics for months - and nothing like this for ages- he is also doing some eye squint with more of his face involved, so not subtle.) Anyway, back to my working theories - his body is fighting the illness that I had - or his body is now having the reaction to the food he ate on Sunday. Either way I am amazingly ok with it all - I know it will pass, it is not a big deal, although he is noticing it and tonight asked when it would stop - that part is hard, but I just told him not to worry it would all pass soon - and so he will stay home tomorrow and have a quiet day so his body can rest. So....since your son has been doing so well I would guess that this is being triggered by something and it will pass as well, I have been reading Sheila's book (fun to recognize some familiar quotes etc - including one of my own) and one point that stuck with me this evening is that tics are a symptom of something that is not right in the body - I already knew this but liked the way it was described in one of the case history's. The tics are sending a message that something is out of wack. The odd squints my son has had over the last few months often coincide with illness or him complaining of his legs being really sore, so I am starting to think growth spurts could be a trigger - to these very subtle tics - he is growing like a weed. Not sure I have been of any support - but could not help reply - as your timing was incredible. Maybe again it is a change of season thing, we last had this happen in the spring - where it seemed so many kids tics were increasing. It has been pouring rain here for days so I also keep in the back of my head the mold issues. I will have to start keeping a log again - I have not felt the need to for so long as he has been doing so well. Claire - it was so nice to read your post and hear how well your son is doing - you have helped so many and will continue to do so with what you have contributed to Sheila's book.

Hi Susan, We were using Patanol as well which worked really well until September when his eyes did not clear up 100% as they usually did within a few days. After 10 days on the drops his eyes were still very red when pulled down and there were still minor eye tics. I actually decided to try some homeopathic eye drops - and within 24 hours the eye tics were gone and within a couple of days his eyes were nice and pink. We have not had to use them again since early September. My son said he really liked the homeopathic one's as they did not sting at all going in - he said the Patanol did. Aerius - we tried on our own this summer after a week of nose twitching which we were trying to ignore - it was minor but getting worse. My husband asked him how his nose felt and he said itchy, my husband who has allergies that were getting bad at the same time wondered if the allergy was triggering the nose tic - so the next day we tried the Clariton - but he did not like the taste so went to Aerius - I think I chose that only because of the label - might have said bubble gum flavor. He stayed on it from mid July to early September - then when he went off it some minor tics came back so we went back on it and he is tic free again. We plan on taking him off it soon. We just took him off most of his vitamins so did not want make too many changes at once so we would be able to figure out how he is adjusting. The ped. does know that we are on the Aerius now. With respect to natural remedies - my husband started taking Quercetin - which is supposed to be good for allergies. He has found it has been helping. He also started on some homeopathic allergy pills which he said have helped a lot as well. I could find out the name if you want - but if you have a good health store that sells homeopathic stuff you could always ask.