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Hi Kim, So glad that you are getting something from my posts. It is my only intention in sharing the info - hoping it helps someone at sometime. Just to clarify - I have three boys, my oldest is 6 and was diagnosed with Pandas last August. He had a SUDDEN and SEVERE onset of complex motor and vocal tics that literally debilitated him - within three days on antibiotics the tics were 90% gone. Each time we went off antibiotics tics would return. He stayed on antibiotics until January at a full dose of several different kinds. I found this site in late October - and read daily but was still hopeful the antibiotics would clear things up. By late December we realized we had to look outside the box. We started with the elimination of milk and were shocked by the difference. I have posted a lot on my New Here thread so won't repeat it all here. Ultimately to make a long story short, we eliminated the milk, gluten and eggs and the tics disappeared 100% added benefits were a much happier child, better focus at school, looking so much healthier. All of these latter things were not really a concern for us as he is a very social, smart, athletic boy with lots of friends. We just did not realize his full potential!!!! Prior to the elimination of the foods tics would come whenever he had a viral illness - which seemed constant. Since being off the foods he has been sick less and recovers faster. I think his immune system is no longer taxed with the foods so not on overdrive over reacting to every illness. Prior to the PANDAS he did have a chronic cough and an enlarged lymp node on his neck - interesting that the only thing that made both of these things go away was the elimination of the foods!! He currently has no tics. My middle son just turned 4 - he has no tics and no behavior concerns. Just a fussy eater. He was very sick as a baby - with a serious blood infection at 2 weeks requiring many rounds of antibiotics. He was a very fussy baby - he is now a very happy, animated free spirit - but still eats limited foods. We did the testing on him as we were concerned about PANDAS for him in the future. My baby just turned 1 - he has been happy and healthy since the day he was born - other than the colds this winter. He became miserable (much like my middle child was most of his first year) - when we put him on homo milk at one year, it took a few weeks to make the connection due to teething, colds etc. Once we took him off homo he started sleeping through the night again and being happy through the day. We have not got our testing back on him yet but I am sure milk is a problem for him too. Hope that clarifies for you - I know how confusing it is with so many children being talked about on this board, and that most are boys. Good Luck. PS I agree with you about Claire, she has literally changed the path my son was on - changed his life and our families life for the better - Chemar has also been so helpful with her info on supplements and her success story gave me such hope. I am also so thankful that Ronna had posted on her story as I was searching for any info that would give me hope. This has been such a blessing to find this site.

Hi Kim, Just wanted to add that my son tested low on Calcium as well, despite drinking 6 glasses of milk a day and having a diet that essentially only consisted of dairy - cheese strings, minigos, ice cream. He had such a limited diet that I had the same concerns as you about removing the foods. I continue to be AMAZED at how his eating has improved since being off gluten and dairy. He would not eat meat before and now tries everything we are eating, he is also eating home made veg, soup that I puree and put lots of veggies in. This was a kid who ate NO veggies and only happy meal hamburgers for meat. I know the worry though of sending them off to school without proper nutrition. I would not let my son stay for lunches for most of this year as he would not eat his lunch - he is currently staying every day as he loves playing sports at lunch - every day his lunch bag comes back empty or close to it. My middle son also has a very limited diet and eats no meat at all as well, and only corn for veggies, He is off the foods as well and slowly he is starting to try some new foods, I was hoping for the miracle change in eating habits we saw with my older son - but it seems to be more slow going. I was even considering adding back the gluten for him to add to his diet, as his behaviour was worse off the foods due to not eating enough. I am glad I held off as his behaviour is fine again and there are several changes I have seen since being off the food which includes not grazing all day long on the same dry cereal, not pooping 4 times a day, and he seems to be having a growth spurt. I think that off the foods he is absorbing more so although eating less in quantity he is getting more quality. I know how hard this all is, remember how worth it it is. One day you will look back and it will be part of your past. I am still amazed how far we have come and what a good path we went down. At the time it seemed like an eternity, and every day that things were not better were so heartbreaking, it has been 8 months and now it seems in so many ways it flew by. So much good has come from this journey, not just for my son but for the family as a whole.

Hi Kim, Regarding multi - vitamins, my son takes a brand called Quest. He really likes how it tastes and he gets two a day - which is the dose recommended. I found them at a health food store and have tried a few other chewables that have more in them but he does not like the taste so I have just decided to leave well enough alone. Regarding soy - the issue is that somewhere between 30-40% ( can't remember exact stat) of those allergic to milk also have an allergy to soy. When we first went off milk with my older son prior to testing we put him on soy and limited to 2 cups a day - he had been having 6-8 of regular milk. We did see improvements on soy - but once the testing came back and he went off all the foods we saw even more of an improvement. At the same time we put my middle son on soy just to make life easier but we did not limit his soy so he had his usual 6 cups a day - within days he was miserable, terrible temper tantrums which he had never had, then he started having accidents, it took me 2 weeks to put 2 and 2 together, in between that time I took him to the ped 2 times due to the accidents and worried he had a bladder infection. Then he started having diarrhea so on the third visit to the ped we discovered he was severely constipated and compacted causing pressure on his bladder and the diarrhea was just the lower part (yuck - sorry if too much info) He was scheduled for an ultra sound on the Monday ( this was the Friday) that night we gave him lots of fruit etc and he pooped 16 times over the next 2 days. His demeanor changed back to his normal happy free spirited child and the accidents stopped. When we did his testing he came up highly allergic to milk and soy. My older one with PANDAS was highly allergic to milk and moderately allergic to soy. My husband came back highly allergic to milk and fine with soy. So the stats ring true in our home. Hope that helps. My son continues to do amazing, he has not had any tics for a few days now, and prior to this the one he had was very subtle, no one would notice it.

Thank you Claire for your response here. In my early research into PANDAS I did come across some very disrespectful exchanges on the old Braintalk site. I have at times refrained from responding to some posts there as I was not sure what healthy could come out of it. I have enough stress in my life. I always find it interesting to read people's thoughts that those who limit tv are punishing their kids unnecessarily - and that the reason the kids are ticcing is because they are relaxing, and that by taking away tv we are taking away their time to relax. Interesting how my son ticced when watching a regular tv yet an LCD did not cause ticcing - I would expect that he was equally relaxed while watching both tvs. He continues to be tic free when watching LCD tv and is now watching all of his regular favorite shows, all the japanimation. I realize that removing tv or replacing with LCD is not the answer to all but it sure seems worth trying for a week. Restricting food was the best thing I could have ever done for my son. He does not see it as punishment as I do my best to provide alternatives - ie no ice cream but sherbet it ok. I make his own pizza and take it for pizza days at school. I expect by the fall we will start to reintroduce some things for special occasions like birthday parties. I have taken his lead on the vitamins and have started to reduce the amount he is taking - had he complained about it early on I would not have forced it upon him. Just wanted to thank you again Claire for summing up so much as always in such a clear and articulate way.

My thought was going back to the whole bucket analogy. Maybe by eliminating foods and supplementing even just for a few weeks you emptied out your sons bucket or at least decreased what was in it so there was no overflow (tics). You may find that they come back while on the foods that he is allergic too and if they do then I would try the elimination again to see if there is a correlation. There is also the cumulative effect to remember so you may not see any tics for a while, but..with hope the tics are gone for good. I think when things are going well it is easy to not worry about the allergies etc - as there are no outward symptoms. Your son is older than mine so it would be harder to keep him on the diet, but maybe the foods are contributing to the fidgetyness. Just a thought, as we have found food elimination resulted in many changes for my son - not just tic wise. What I have learned from my recent research is how many symptoms can be the result of food allergies. Environmental factors are important to note as Cheri says, even if you just make a mental note of the tics and when they occur. We have now got a pattern of two years with eye blinking for my son, once before PANDAS so we did not know what it was, it presented as a tic in hindsight, but the doctor did give allergy eye drops and the blink went away within a few days. This year it happened again, and again a few days on the drops and his tic was gone, his eyes presented a very red and irritated and it was at the same time of year - so something in the air.

Marie. So glad to hear how well your son is doing and how the family as a whole is doing. So many times your posts hit a chord with me, things you say really hit home for me. I remember a few weeks ago you saying we needed to put the rear view mirrors back in place...I knew exactly what you meant. I spent months watching and counting eye tics in the mirror. My son was always worse when driving in the car. I no longer watch. In your last post you said that if tics were not involved you would have not altered anything and you would have been on such a different journey. I AGREE. I asked a few (hundred) times early in my journey what the reason for this could be as I really believe things do happen for a reason - I could see nothing positive that could come from my son waking up one morning debilitated by complex motor and vocal tics. In the end, from all that we have learned and the changes we have made he too is such a different child than he was in August. We have had so many added benefits to changing his diet, limiting tv, supplementing, not just the reduction/elimination of tics - but other changes in his demeanor, behaviour, focus, all for the better, not that any of these things were serious problems, but we just did not realize what his full potential was. I remember talking to my ped. when we got the gluten results back, my son had already been off milk for a few weeks and was close to tic free and we were thrilled with how he was doing, I questioned if we really needed to go off gluten as well (partly because of all the work it would be and my worry about limiting his diet even more) my doctor said lets just do it and see, you think he is doing well now but maybe he will start doing even better. He was right. We also spend much more quality time together as a family - which is good for us all. My middle son also tested positive for many foods and has been off them for a month or so now, he has no tics but we have the fear of PANDAS for him - he is a very fussy eater but in recent weeks he is starting to eat a little better, and he seems to be starting to have a growth spurt, he has always been smaller - since being very sick as a baby. Today my mother noted how healthy he was looking. The baby did the test as well but results are not yet in. My husband and I also did the Elisa testing, I was fine with only a reaction to Pinto, Navy, Kidney and Green Beans, foods I never eat. My husband on the other hand reacted to pretty much everything. The Naturopath said she had never seen result quite like it. He did go gluten and dairy free a few months ago and his asthma symptoms have decreased and he had a chronic cough which is probably 90% improved. Interestingly Rice was quite high for him and we have been having a lot of rice in the form of Rices and Rice Pasta - Almonds were also high and he has been drinking almond milk. I am hoping by removing or limiting the other foods that the cough will go away 100%. So....all in all I think there have been many good things to come from this not just for my son with PANDAS but for us all. We eat much healthier foods and nothing processed. (lots of work for me - and I thought I was busy before I became the gluten free diary free egg free Martha - have to admit baking just isn't the same without Martha's butter filled recipes...I thought it was funny that you sneak out for cheeseburgers, I regularly gobble up chocolate bars in the car when no one is around - today a friend came over for a visit and brought me some baked goods from a bakery hidden in a paper bag for me to enjoy in a quite moment,and I have a loaf of bread hidden at the back of the freezer) I really think that my son's immune system was weakened due to food allergies and when the strep hit him he ended up with PANDAS. We do have the genetic link to rhematic fever as well. I hope and pray that my other son's do not have to go through the same thing, although I will be much better able to handle it thanks to all that I have learned from this forum. Thank you for your kind words Marie. Marina, so good to hear your good news as well.

Hi All, Just wanted to send in a little update. No news is good news. Things are going fine here. Very minimal tics from his last illness which was a few weeks ago - really just a very minor nose twitch - not constant and nothing anyone would notice - I still find it endearing. Last illness took 4 weeks to fully recover from and it has been 2 weeks since he was sick and he is doing really well, and in fact during this illness his tics have been so minimal throughout that no one would notice them. Minimal unnoticeable tics and no behavior changes or difficulty with handwritting. What a change! He continues to eat so much better than I could have ever imagined he would. He is happy all of the time, and enjoying school and his friends and everything life has to offer him right now. He is thriving in every possible way. I have decided to decrease the vitamins a little and see how it goes. We are going down to a multi, vitamin C and some fish oil twice a day and will stick with the cal/mag/zinc combo at bedtime. He still gets prophylactic antibiotics once a day and a probiotic once a day. He is also getting a powder to help his intestine. Fingers crossed that things continue to go well. Spring is here now and I am hoping all the flus, colds and fevers that have gone through my house over and over and over again all winter long are a thing of the past. Marie and Dara, I am so happy to hear how well your kids are doing, I feel like we all started this journey around the same time so I love reading you posts. Marina - I hope things are going well with your kids as well. Claire, as always you will be missed tremendously now that you are busy back at work...thank goodness that all of your posts are available for others to read - you have provided this forum with an incredible amount of info and insight. I continue to be amazed at how much you know about so many different topics. I can only imagine how much money you have spent searching for answers for your son...worth every penny as it has changed his life course for the better. Hard to put a price tag on that. Kim - you like all of us are a woman on a mission, and I am sure you will continue to find some success as we have all been so fortunate to find in many different ways. Andy, I was amazed to hear how well your son is doing in general academically after you described some of his tics. When my son was at his worst in the Fall he had constant eye tics whenever he was off antibiotics (and watching regular tv). He was not reading at grade level and was being disruptive in class I think as a way to divert attention from the fact he was struggling. His eyes ticced literally every second at the worst. He was getting 4-5 time outs a day etc. Since January his reading has improved dramatically so he is at or above grade level, academically he is doing amazing and not a single time out since before Christmas. Your son sounds like an incredible kid - to be doing so well with his challenges. He is so lucky to have parents searching for answers to help him. Good Luck to everyone.

Hi Everyone, Things continue to go well here tic wise. It has been very encouraging for us to see our son clearly sick with a cold and fever and have only a very minimal increase in tics and no problems with emotions or behaviour. We have come a long way over the last 8 months. Amazing it has been that long since this all started. The other night I read through this whole thread and it was a good reminder of how far we have come and all that I have learned from the wonderful people who visit this forum. I realize the thread is getting quite long but do hope that it could be helpful for someone down the road to read our story and success without having to jump threads too much. I do have a question...as I mentioned the other day my son is starting to rebel against the vitamins, we tried switching to liquid and he continues to rebel. It may have been timely that some threads were bumped and I came across other threads which talked about trying not to make our kids feel they are being punished. I am starting to feel like my son feels he is being punished. He is starting to eat so much better, and was wondering if anyone had any suggestions as to which vitamins are MOST important so that maybe I could edit the one's I am giving. Currently he is on EFA (8 a day) Zinc (2 a day) Magnesium ( 2 a day) B complex ( 1 a day) Calcium liquid ( 2 a day) Multivitamin (2 a day) Vit C chewy bears ( 4 a day) Probiotics ( 2 a day) Antibiotic (1 a day) He likes the current multi and Vit C and is fine with the liquid antibiotic and calcium. He has been on the 8 EFA for about 3 months, so I wondered about reducing it to a lesser amount. Marie, I did look for the Animal Parade multi but the place I shop had not heard of it, I will have to check if it is available in Canada. Since he is eating much better I wonder if just a really good multi might be enough?? I feel it is worth trying as he is doing well right now and if things deteriorated I am sure he would be willing to revisit the vitamins. Any suggestions would be appreciated.

efgh, We always found out about low iron through routine blood work. I had my older two checked a few times over the years due to their terrible eating habits, when I would tell the doctor at the yearly check ups I was concerned about their diet the iron was always the test I was sent to do. Now that I know what I know, I realize how much more they were becoming deficient in. Speaking of vaccines, I have never had a second thought about them but now I am worried, my middle son ( no tics) is going for his 4 year check up on Friday and will be getting his vaccine, I think sometimes they give the 4yr and 5yr at the same time, but you can also spread it out over the year, I will definitely opt to spread it out.

Hi Brandi, I am so sorry you are having such a difficult time, I know the feeling well. My son was diagnosed with PANDAS in August - and was on full dose antibiotics for 5 months, every time he went off them within days the tics would return. During that time he had constant tics, but very up and down and the bad days coincided with viral illnesses. I am so thankful that we found this site - I post on the tics board here - I have a thread called New Here (Pandas) which outlines what we have been going through - ultimately the antibiotics were not the answer for us in terms of clearing up the tics ( we also only had tics) ultimately we did several things that have resulted in my son being tic free or close to most of the time. Supplements were important to boost his immune system, reducing/eliminating TV helped as well, ultimately we now know the flicker on tv was a problem, and he can watch LCD with no problem. Probably the biggest change has been discovering he had food allergies - we at first did an elimination of milk after I read several threads where this seemed to be common with kids with tics, we then did blood work, Elisa Test - a delayed sensitivity test - and found he was highly allergic to milk, as well as gluten, soy and eggs - all things he ate daily, especially milk - he lived on diary - once off the food it was like a miracle, the tics literally started to disappear, he became so much happier, his focus at school improved and his sleep patterns changed for the better. I would NEVER have guessed milk could have been causing or contributing to his tics. I always assumed allergies to food caused upset stomachs and hives, not tics. To put it very basically I think his immune system was under attack after the strep infection and then never managed to settle out as he ate foods daily that were also causing an immune reaction. We are thrilled with how he is doing. He is still on prophylactic antibiotics but we do hope to take him off that sometime sooner rather than later. He is currently sick with a cold and he has had very minimal increase in tics - nothing anyone would notice. His tics at their worst were very noticeable, although we are lucky that he was only 6 and somehow the kids in his class did not make fun of him or call him names, I am sorry your son is going through this. I would guess he may be a little older, I imagine even a year older would make such a difference in what the other kids would say. Please know there is hope, I was completely lost in November and December, I had hoped the 'medical community" could cure my son, ultimately it was the research that I did and the WONDERFUL people on the tic/tourette board who have put me on the right path to change my sons life for the better. We also started to see a naturopath to assist on supplements etc - many main stream doctors will dismiss the idea that the foods/vitamins make a difference. If you read over on the tic board you will see that many people have found great success. If you have any questions please ask...I check the tic board daily and it is a very active board so if you post there you will be sure to get many valuable responses and much support. Good Luck.

Andy, Just curious as you mention your third is too young for the fish oils, what age is safe to start? We are now all using fish oils as well - my husband, me, oldest child with PANDAS, and middle child with terrible eating habits - baby is 14 months and I have not thought of when he would start. The naturopath we go to says she recommends fish oils for every patient, children, middle age, elderly - everyone can benefit. Your comment about not losing your brain gave me a chuckle.

Yes, I give 4 mg a day. I have always had a concern about my son not having enough iron so always looked for a multi with iron - he used to eat no meat, then graduated to the happy meals and then some hot dogs. Whenever his iron was tested it was on the low side so there have been times I have supplemented with liquid iron - I am not really too concerned about him now as he is eating meat almost daily - pork, turkey, chicken, beef, - this is only since going off the dairy. I still cannot believe what he is eating. If only my middle one would start eating more than cheerios and rice krispies all day long - he has not had any meat in years - and we are meat eaters. The only time any friends of mine have mentioned giving iron free multivitamins is when their kids have constipation problems. Vitamins are becoming a little bit of an issue here - my son is just starting to rebel against them - now that I have started to taking vitamins and fish oils, I am taking 6 pills 2X a day and it does get monotonous. He is taking much more so I can empathize with his feelings of hating the vitamin routine. I am trying to get as many liquid vitamins as I can - we had started off trying liquids but he hated the taste, now he is willing to try again with liquids - so I plan on mixing it with a strong tasting drink to mask any taste. I tried a little today and he seemed ok with it. Does anyone know if zinc comes in a liquid form. Also, it is ok to just crush vitamins and dump out capsules into juice, I am assuming there is not a problem with this. RONNA - I seem to remember you saying your son had gone to just a regular multi and some fish oils before Christmas, but then I think I saw a post from you saying he was on bonnies vitamins still - did you try to go off them and found you needed to go back. I am just hoping to someday soon decrease the amount of vitamins we are giving, especially since he is now eating so much better. The illness he currently has - still feverish today - has caused minimal tics. Really only a slight nose twitch which I actually find endearing ( never thought I would say that). His nose is stuffed up so I think it is his reaction to the stuffy nose - much like his eye tic was the result of eye irritation. He continued to have no eye tics - and today I looked at them underneath and they are nice and pink - only a little red, last week they were fire red and bumpy. He has had a limited appetite so I have not been getting all the vitamins into him - I will keep him home tomorrow just to be sure he fully recovers. I did some juicing today, I borrowed a juicer to see how it goes - have not tried giving the kids any of it yet, but am freezing ice cubes of the juice so I can add it to their regular drinks - hoping to hide it from the middle kid - although nothing seems to get by him.

We give our son Quest multivitamins - 2 chewables a day which is the recommended amount. It does have 2 mg of iron. We tried to give him vitamins called NuBears which were recommended to us, they have 5mg of iron in them - but he did not like the taste ( they were pretty bad). The Quest have no artificial colour, flavour etc. Based on blood work for him we have supplemented with iron at different times. We are currently planning on supplementing with iron (based on slightly low levels on the last blood test done) but the liquid I bought he did not like, I am going to try another brand. I am not so concerned about iron now as he now eats a variety of meats - what a change from the only meat he would eat would be in a happy meal burger - so we used to get him at least one to two a week - we have a ton of happy meal toys floating around this house. There was recently a thread about iron which I did not get around to replying to - I was just going to add that we were advised iron is best taken with orange juice - I think Claire already may have replied to that effect.

Hi Kim, My oldest son who is the one with PANDAS is 6 - going on 7. I really think that food has been a big problem for him - and the lights seem to more of a newer thing, although I never thought to pay attention to lights - until we had the huge increase in tics at a toy store at Christmas, I assumed he was just excited - Claire drew my attention to the lights, I kept it in the back of my head - and the next time we went to a brightly lit store the same thing happened. We do not take him anywhere where there are bright lights, and he moved seats at school to be close to the window and the teacher keeps the lights off when she can, and when they are on only half are on. She has been such an incredible support though all of this. I will have to read through some of your old posts to remember more about your kids - I have trouble keeping everyone straight sometimes! My son is not allowed to play with his friends gameboys and he knows why, he tell them his eyes are allergic to the video game - I am hoping that we get to the bottom of the photosensitivity - Claire has pointed us in the right direction, as she has for so many others. I will keep you posted with anything I learn and any test results. My son still has a fever every 8 hours, but no noticeable increase in tics so we are thrilled, he has even been allowed to watch a little more tv than usual ( had been watching none while eye tics were bad last week) and he has been on the computer a few times, which is not LCD, and he has been fine. Claire, I have really come a long way to not be demanding more antibiotics for my son, I actually have several months supply so could have upped it if I wanted, which I probably would have done a few months ago, I am getting more and more confident as time is going on. We are so thrilled to see him doing so well, this is the first illness with no emotional stuff, and no obvious tics - eye tic is also completely gone after a week on drops. Here is hoping Spring is much better than winter was.

Kim - I had the same fears about my kids starving without milk - but have found that goats milk is fine with them, as is almond milk - only one of them liked rice milk - I hated it. I have also been buying goat cheese for pizza - there are so many kinds of goat cheese, I always thought there was only the soft cheese. It is amazing what you discover. Keep in mind if you use soya that something like 30-40% of kids with milk allergies are also allergic to soy - the case with both my kids. Marina - I am so thrilled to hear about how Matt is doing - 95% tic free - you are a superstar! Claire - I so enjoy reading the wonderful advise you give to so many - but do know the time it must take from your work day. Update from here, not sure what is keeping me from having a meltdown - seems when things are going well, a new problem arises. Last post my son's eye tic was almost gone with the eye drops, it did end up going away 100% - so he had NO tics, then yesterday he came home from school saying he did not feel great, he had a high fever and I found out strep was going through his class. He went to the doctor and we have decided not to increase his antibiotics at this time as his throat seems fine - we did swab it, he has a bad cough and high fever. Initially when his fever was high he started to have a few tics - one's we had not seen since January which made my heart drop as I thought we were heading back to the terrible tic explosion, once his fever was managed all the tics went away. He has continued to spike a fever every 8 hours and we give him motrin, and the tics have been very minimal - often non existent. He is a little more emotional than usual, but that makes sense since he is sick. This is the first illness he has had where there has not been a significant increase in tics, last time he was sick with strep about 6 weeks ago, tics remained for about 4 weeks but were minimal but regular - a throat clearing/ cough. This time they are very irregular and even more minimal. Knock on wood this means that his body is finally starting to react more normally to viral infections. Currently all three of my kids have fevers so something is going around. This has been a winter I hope never repeats itself.

Hi Kim, I think you summed up my thought on the tics and the flare ups much better than I did! I remember months ago reading a post here or on Braintalk from someone saying they could see specific tics result from particular food intake - ie - humm vocal tic with milk, head shaking tic with corn etc. You do mention your son has a limited diet - sugar and dairy. I am not sure if you have already done the ELISA testing, we did that with our son with tics whose entire diet consisted of dairy - I really did not put much stock in the food allergy/tic correlation at first - I assumed if he was allergic to foods it would be obvious in terms of gastro discomfort of some kind. In the end dairy was a big problem for him, once he stopped diary and then gluten and eggs and soy as well - his appetite has changed dramatically - as well as the tics all going away. He eats or at least tries everything that I make for dinner - meat, vegetables, all different fruits. My middle son also has a very limited diet, we did the Elisa test for him as well - no tics with him- and he was highly allergic to all the same foods as my oldest, and had a reaction to pretty much every food on the list at some level. I went to the naturopath for him and when we reviewed his history it became clear his system has been very taxed by antibiotics which have caused problems with his peyer's patch ( sp?) and his reactions to foods. He was put on prophylactic antibiotics within hours of being born due to concerns about his kidneys - at one week he had an invasive procedure done, a few days later he was in hospital grey, lifeless and diagnosed with a blood infection. He was put on several antibiotics immediately and remained on them for 5 days in hospital then several weeks at home, all the time he continued on the prophylactic antibiotic to prevent the kidney problems. Ultimately his kidneys were fine - the problem was that they were enlarged, but by 6-7 months they were fine and he was off the antibiotics. The invasive procedure was in relation to the kidneys - so all in all he did not have the greatest start. I could go on and on about him and his health - hospitalized a few times for severe respiratory distress - as well as many regular colds etc. So clearly his immune system is not up to par. I had hoped that once we went off the food that he would start eating so much better but this has not been the case, he has started to try a few more things but still eats no vegetables (except corn) and no meat. I think he has had nachos for breakfast, lunch and dinner today. We are seeing a nutritionalist tomorrow so I have to get some guidance from her. The naturopath has given him some powder to take everyday for his intestinal tract and he is starting on probiotics as well. Not sure why I went babbling on about him....I just pray that what we are learning now will help prevent he and his little brother from ever being diagnosed with PANDAS. Just thought of something in terms of changes since being off the milk for my middle son - 1. I feel his language has developed significantly, 2. he used to always almost have chapping under his mouth in the winter, it was like he was drooling and then the moisture when outside would chap - this has gone, and when we first went off the milk it was still quite cold - so I do not think it is from the change in weather. 3. his pull ups seems to be dry every morning, he has been toilet trained since 3 but always woke up with a very wet pull up until he went off milk - he does still drink goats milk or juice before bed so there has not been a reduction of intake of fluids. All 3 could be dismissed as resulting directly from the elimination of milk, but I believe there is a connection.

My son has a diagnosis of PANDAS. I agree with Karen, my thoughts now are that regardless of what the diagnosis is - be it TS, transient tics, chronic tics, PANDAS - that the issues seem to be so similar - and the alternative treatments seem to help all the various tic disorders. Obviously with PANDAS there is a need to be on antibiotics whenever strep is present. The jury is still out on whether prophylactic antibiotics are the way to go, I believe there is currently research going on to look into this at NIMH. We decided to err on the side of caution and keep him on the antibiotics, although as time is going on and he is doing so well I do think we will continue to re-evaluate this. My original thoughts were to keep him on the antibiotics until he was 18 - like they did with rheumatic fever - we are now thinking this summer we may take him off them - big change!

Just wanted to update - I took my son to the doctor yesterday just to check his eyes as he was complaining about them being sore and stinging - I started some eye drops I had in the house - looking back it was around this time last year he had some blinking that we were worried was a tic and when we took him to the doctor he looked at his eyes and they were very red and irritated underneath, he gave him anti-allergy eye drops and the blinking stopped within a few days. Yesterday the doctor looked at his eyes and they were extremely red and bumpy under his eye - fire red. He suggested we continue on the drops and perhaps add allergy medication (over the counter) if the eye drops alone did not help. His eyes today are still red but not at all as bad - and his eye tic is almost gone - whereas on the weekend there were times it was constant. My current thoughts on this is that probably there is something in the air bothering his eyes but initally he was able to manage it without presenting with eye tics, the bright lights at the store and at the lake made things worse and then we got the eye tics - the bucket theory at play again. So...now that he has the drops to decrease the pain of his eyes he is better able to manage the lights - he has been wearing sunglasses outside and over the last few days, especially on the weekend he was wanting to wear the glasses inside as well - his eyes were so sore. Today he has not worn them inside nor complained of sore eyes. His teacher said he had a great day. I think it is important for us to not always assume everything that our kids have is a tic, there are sometimes underlying problems easily resolved. We saw this twice this winter with chapped lips, whenever his lips were chapped he would get a wierd mouth stretching tic, not what most kids would do when they have chapped lips. This 'tic' lasted a few days each time and went away once the lips were healed. Just wanted to mention this in light of several recent posts on eye tics and possible seasonal allergies. We are hoping to do some more testing over the next few days - our naturopath is looking into shipping etc. We did do the ELISA testing yesterday for the baby, myself and my husband - (cha ching, cha ching)- the baby has been sick a lot. One thing after another - presenting much like my older son did at his age - so my fear of PANDAS continues. With hope by learning what foods he may have problems with ( we already know milk was a problem) we will save his immune system from added stress. I would hate to see one of my other boys go through this. I still do belive in the end the silver lining has been well worth the dark cloud. On another note, I went to the naturopath for myself as well - just because I feel quite spent - emotionally, physically, mentally, etc - I know you will all understand those emotions. I think adrenalin kept me going somehow - really looking back I am amazed I managed to function somewhat normally. Now that the real crisis in many ways has passed - although this is all still a worry, I do feel that PANDAS will eventually be in our past - my body is probably almost just processing what I have been going through - anyway - the naturopath gave me a tonic of ginsing among a few other things, and recommended a good mulitvitamin and fish oils. I am amazed how much better I have been feeling - I have truly been converted to naturopathy. I had been to my regular doctor due to the chronic tension migraine I had been living with for 4 months - and was given some medication that did get rid of the headache after about a week- but the plan was for me to stay on this medication for several months - I was not feeling great about that. But every time I missed a pill to try to get off it my headache would come back. Since starting on the tonic last Thursday I have only taken 1 pill - instead of 15 - big difference. I have more energy during the day and sleep better at night. I know earlier on this thread Ronna and Claire both told me to look after myself - which I was trying to do, but I do wish I had gone to see the naturopath earlier to look at my "whole self". We as parents all know how much better the household functions when we are functioning well. Just want to remind everyone to look after yourself - the entire family will benefit.

Just a quick update. Light continues to be a problem - today it was by way of bright natural sunlight near the waterfront. YIKES - I can keep him away from the brightly lit stores, I can prevent him from watching a regular tv, I can take the LCD into school when the class is watching tv - but I really cannot prevent him from being exposed to sunshine! We also spend the better part of the summer at the cottage which is on a lake. It was quite clear to me today - his tics had decreased from the lights last week - and were pretty minimal and consisted of only a few eye tics sporadically through the day- nothing constant and nothing too obvious - he has not watched any tv since last Sunday as even the LCD was bothering his eyes. Today we were out for about 2 hours and it was very bright, his eye tics just got worse and worse. Then he started to complain of a upset stomach - I rolled me eyes up a few times like he was doing and it made me feel queasy too. By evening he was saying his eyes were really sore, and stinging - he was not himself, just wanted to go to bed. I am trying to figure this all out. Obviously viral illness as well as Strep were the obvious triggers before, and I think we are slowly getting a handle on that by building his immune system - now it seems bright light is his biggest trigger. I am trying to decide what tests I should do - and have another appt with the naturopath this week so I want to make a decision soon. I am going to go and get him a good pair of sunglasses tomorrow so I hope that will help. His behavior has been fine - and he has no vocal throat clearing stuff going on. He wanted all the lights in his room off and his eyes did seem a bit better once he was settled into bed. He hates what his eyes are doing and wishes it would stop...I hate this..... Ronna - your comments about allergies are interesting - I am trying to remember last year when my son's eyes started to act up - it was probably in April - antihistimine drops would settle them down. This was before the PANDAS and we did not see his eye stuff as tics but just as an allergic reaction due to them getting better on drops.

My son has a few tiny white spots on his nails, I also have some white spots as does my husband. I am somewhat confused as I was thinking about the white spots the other day when I read the post and seemed to remember hearing that the spots were the result of a deficiency in calcium - this was from childhood. Anyway - I did ask the naturopath this week about it and she said the spots were calcium and I think magnesium deficiency. Is there a consensus about the spots or do some think it is zinc and others calcium or a combo? Just curious. Anyway - we did a hair test for heavy metals...it showed a deficiency in zinc - normal range was 180-220 and he was 95. It also showed a deficiency in calcium - normal range was 180-760 - he was 105. This surprised me considering when the test was done he had just stopped all dairy a week before, so previous to that he had a diet that consisted of mostly calcium enriched foods. Obviously he was not absorbing. He did do a zinc tally test - not sure if anyone knows about this - you drink some liquid and if it tastes like water you are deficient, if it tastes like metal you are fine...he said at first it tasted like water then within a few seconds said it was yucky and tasted like salt. I would guess he would have no words to describe something metallic. So this test seems to say he is not deficient. Such a guessing game. ( I tried it and it tasted like water to me)

Hi Sherry, Sorry to hear that your son ended up with tics again. Your story is sounding very similar to how mine started out. I have written a lot on the tic forum ( I don't check this board very often, only when I see a thread with PANDAS) - under New Here - I kept a running log in hopes of it helping someone someday. If you have the time you might get some ideas and learn from what we finally have discovered. I won't repeat it all here. I can answer your questions from what I know - others probably know more. 1. My son does not have tonsils, they were removed at age 2 - he is almost 7. I would think that if the strep infection is in the tonsils that it should help prevent further infections, but I think there is conflicting info on this. It was not something I have researched as it was not an issue for us. 2. We started a supplement program that seems to help. I have the info on my thread 3. My sons tics were ALWAYS worse when in the car. The two obvious triggers for us were the car and the tv. Hard to eliminate the car rides but we were able to eliminate the tv then introduce the LCD tv. The car and tv are both related to light and flicker. In the car the light flickers through buildings, trees etc. Keep an eye on how he does with florescent lights. This is also a trigger for my son. 4. My son's tics were also always worst at bedtime. I think it was probably a combo of being tired as well as having just watched his bedtime show. Others have also said their kids tic more when tired. 5. As you will see from my log - it seemed that each time we went back on antibiotics they did not work as well - we are currently using prophylactic antibiotics but had used full doses for over 4 months. Ultimately the antibiotics were not the solution for us. Please read the thread and feel free to ask any questions. If you post on the tic forum I will be sure to see it. To give you hope - my son is doing so much better, and I truly believe that with the proper treatment, both antibiotic to get rid of the strep, and boosting the immune system that this is a temporary illness and he will grow out of it.

I HATE FLORESCENT LIGHTS....just had to get that off my chest. So, I happened to post yesterday about how great my son was doing, no vocal cough etc, minimal eye ( 4-5 in total) and that with hope he would be tic free again within a few days. This morning he was even better - not a single tic and he continued to be tic free until we went into a store to return something and there were florescent lights. He really has not been in a store with florescent lights ( he can go into grocery stores, toy stores, cosco etc. anywhere with incandescent lights without any problems - which rules out the possible stress factor which is what my doctor initially thought would be the cause of the tics in stores) since our horrific Christmas experience when he was getting his reward for not watching tv - he had been tic free and basically started to convulse in the store - I had assumed it was excitement and Claire suggested it might be the lights, I was skeptical...until a week later when he was again tic free he had the same reaction in a baby store - nothing exciting there. So, I was returning a deep fryer ( yet another small appliance I have bought in recent weeks for these food issues) and he was with me as we were planning on getting him some new shoes as well. I could hear him start to cough almost right away, then even a few motor things started - nothing like the ToysRus episode - that was a 10 on a scale of 1-10, this was more like a 3-4, but when he was at a 0, it was upsetting. I reluctantly went on to get the shoes, and he continued to have vocal coughs - and his eyes were darting up as well. We got out as fast as I could and he had eye and vocal tics in the car - (he had absolutely none on the way there in the car) Things have settled out since being home, but not gone away. I guess the good news is that his reaction was nothing as severe as a few months ago, but I do feel I have to get at the bottom of this photosensitivity issue. Was his reaction less as yeast is less of a problem now than then due to the use of probiotics? Was it less as he has been having supplements? All questions which I wish there were easy answers to. We are going to see the naturopath this week and I will be asking about the pyroluria test as well as yeast test as it seems both of these conditions can cause photosensitivity.

Hi there, I remember reading your post last week about diet and I meant to reply but did not get around to it. I was also very overwhelmed with the diet changes - I have three small children and am busy enough without baking from scratch. While I am still in the process of learning and reorganizing my kitchen to make it function better, it is getting easier. We had to eliminate all dairy, soy, gluten (wheat), and eggs. Quite a challenge when you are used to buying a lot of convenience foods. I did buy a bread maker after buying several gluten free breads which no one would eat - the baby actually did throw up after eating it - it is disgusting - at least all the white rice breads we tried. I was trying to get as close to plain white bread as possible. After about 5-6 attempts with the breadmaker, changing the recipe a little each time - we did finally have some success - although the kids will only eat it the day it is freshly made. I bought a breadmaker that makes bread in 1 hour 10 minutes - so it is not too bad. I also started baking and found a few recipes that work and stick with them for the most part. A couple cookies. pancakes, cupcakes - the end result is nothing like Martha Stewart recipes which are full of butter etc - but the kids like them well enough. I cleared the kitchen of all foods that the kids could not have - so they would not be upset seeing something and being told they cannot have it. We know my middle child has allergies to all the same things - although we have no medical concerns with him - but with hope by catching the food allergies early we will possibly prevent PANDAS in him. With respect to getting vitamins into kids, I have heard of some giving vitamin shakes, and finding all the vitamins that are in liquid/powder form and adding them. We have switched to goats milk and almond milk - the almond chocolate is quite good. We have also been making gluten free pizza dough in the breadmaker which is remarkably easy and very delicious - we use goats cheese - it come as hard mozzarella, cheddar etc. I had always thought of goats cheese as only soft. It grates fine and the kids have not noticed any difference. I have resorted at times to giving treats for things during this journey we are on - when we went off tv he earned money for a toy. There have been some days recently my son has grumbled a bit about the vitamins. This is fairly new - I have on occasion given him something he really likes once he has finished his vitamins. Sorry if I am rambling, not sure if any of the info is helpful - I know how overwhelming it all is. What I can tell you is when we went 100% off the foods the changes we saw in my son were incredible - and happened within a few days to a week. We were only hoping for a reduction in tics - but his concentration improved, his fine motor skills improved - these were actually things we were really not concerned about - so were amazed to see how much better he was able to function globally when his immune system was not being assaulted. He is also happy pretty much all the time, a real joy to parent. The teacher was shocked - he had not been a problem in school and was doing fine academically - but the shift in his focus and his improvement in handwriting and drawing was incredible. The other thing we noticed immediately with the vitamins was he started to sleep 2 extra hours a night. I do not know much about the yeast - although it is something I am hoping to look into this week - my son was on antibiotics for over 4 months with no probiotics so I am sure this is an issue for him - from all that I have read - yeast can be a problem that results in tics. I have read that when treating yeast some kids get a little worse before they get better - "die off" I think, or a 'healing crisis". So don't be alarmed. I am sure others will be able to fill you in on the yeast -I will be watching for the info as well. Good Luck.

Hi Marie, Interesting about the weather. It is thawing out here - around 0C and just above. There was also a Monday a week or so ago when the teacher told me he just had such an off day in general - it surprised me as he had done so well that weekend, it had been pouring that whole day and was very unusual weather, as the next day we had a snowstorm. I had been reading the day or so before a post about rain and mold - so I made a mental note that it was raining that day - just to see if there is any pattern to it. Could have been the kids were indoors all day so a little off in general. It is amazing the little pieces of info I learn here - all parts of the puzzle. I have not read anything specific about thawing and tics - but it sure seems possible. The last two days my son has been doing amazing - the eye tic is pretty much gone, very infrequent - maybe saw it 6 times today in total, and no vocal stuff - the hmm umm thing is gone. I hope it was all related to the strep and his immune system is almost back to pre-strep form. Look forward to hearing from you.

My son also sweats at night. Like Ronna's son my son prefers to wear little to sleep, in the winter it is a struggle to get him into pjs and often he goes without and does not wake up cold. Meanwhile, I have three layers on and still feel cold. He is never cold even on the coldest winter days. I think he would go without a coat and hat if I did not insist. The few things I have noticed in recent weeks/months - since his tics have improved so much, is that he is more willing to wear pjs at night, he likes to be tucked in with the blankets ( he used to sleep with no blankets on top) and in the last few nights when his tics have almost completely disappeared ( hooray) he has asked that all the lights be off in his room. He always wanted all the lights on, not just night lights, but often the overhead light as well. I had taken notice of his wanting to turn out the lights but had not put much thought into the pj's thing. I wonder if this is common?