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Just to update - my middle son has completed the antibiotics with no PANDAS symptoms - early on there was day he was crying a lot - up and down all day - the littlest thing would set him off - I was worried, but that has stopped - and it could have been just because he was sick, grumpy and stir crazy! My little one is still coughing (the other day it almost sounded tic like - and I recalled how my PANDAS son at 3 was sick then had a cough that dragged on and on - when we went to the doctor (a different doctor) she said it was a transient tic - that was the first time we had heard of tics with him) - and my PANDAS son after his round of antibiotics got worse - so yesterday I kept him home from school - he has a loud vocal tic - I took them all to the doctors to get swabs. I did ask about omniseph as per Micheles info from Dr. Murphy for exposure to strep for PANDAS kids - the pharmacist is looking into it - as I am not sure it is available in Canada. The doctor was open to trying a round - but feels his symptoms are probably the result of a viral infection - and we had already done the round of azith - so to let things ride out. I am going to keep him home today too - all the rest of the family has been sick over the last few weeks, and the other kids have missed school - as usual my PANDAS son shows no normal signs of illness - just the increase in tics. He had a crazy weekend of hockey and birthday parties so I am sure he wore himself out. Anyway - he continues to be happy - an no emotional lability etc - so all in all - it is really just an increase in the tics - and they are not horrific the way they have been in the past. I am hoping a couple days of resting will improve things. We did take him off Bonnies until things settle down.

Hi Kim, Emma, Chemar I agree about the concern with the Grapeseed Extract. We are only up to 2 a day but his vocal tic is worse - there are so many other things that could be contributing, the recent exposure to strep being the biggest (Although we did do a round of full dose azith) Today is his antibiotic day - so I will see how things go through the day and tomorrow. I am going to go back to my usual multivitamin. My littlest one is still coughing - as am I so we have had a bad viral infection. I am going to take the two younger one's in to do a swab - a follow up on the middle one and a check on the little one. Thanks for all the advise - once things settle down again I will try Bonnies again - when there are not so many other things going on.

Hi Kim, Thanks for the info on the azith - I did not know there was a problem - you are sooo knowledgeable. Where in your brain do you store all this info????? I just asked itsme on another thread about her experience with Bonnies - did you see any increase initially? There are so many variables going on that it is always hard to pinpoint what is causing what. We are starting them slow - and seeing where it goes. From the ingredients - it is much like the vitamin protocol he was on before - but easier as it is in one bottle.

Thanks itsme, How much of an increase did you see? How many pills does your son take? How big is he? We thought we would build to 10 a day - I think by weight it should be 15. How many did you start with? What level of increase did you see?

Hi Everyone, We had a follow up with a neurologist - my son continues to do well on azith and there is no plan to try any other meds at this time. He is 9 now. My main question to the neurologist was my ongoing concerns when I see ANY tics that they are damaging the basal ganglia. My fear is of course permanent damage. She assured me that all the studies done and imagining done to date do not indicate any permanent damage to the basal ganglia with PANDAS patients. She said it was not like a regular injury - like if he have a bad knee but kept running, it just gets worse and worse. She also said that since he is doing so well now - there is a good chance things may not get any worse - and stay status quo. She said she usually sees things get worse from ages 9-11. She also assured us as have every doctor we have ever seen - that he will more than likely be tic free by 18 if not sooner. I know all of our kids are different, and there are no guarantees - but this was good news for us. We have seen our son with terrible tics - and at times worried if he could attend school (luckily things have always been worst in the summer - at the time of onset, and again when we took him off antibiotics). Today he is happy and tics are minimal - and I have also come to terms with them. She agreed with the ID clinic that he would probably stay on antibiotics until 18.

Thanks everyone. We got the vitamins - and started (no problem swallowing) - we are starting slow - just one a day, then two etc. I am not sure it is a great time to start them - as my PANDAS son has been exposed to strep so was on a full dose of azith - we started the vitamins the day he stopped the full dose - he had a vocal tic today - sort of a throat clearing. Who knows what it is related to - yeast from the increase in antibiotics? Anyway - I am going to just see what happens. Will keep you posted. Would be interested to hear from anyone who saw an increase in tics with Bonnies.

Your whole family is in my thoughts. I hope that things improve soon. It is so hard for us....and for our kids. Seems so unfair. There seem to be so many new PANDAS moms - so I am not sure what your treatment plan is with your son. Don't spend energy worrying about what the future will bring - (I know it is hard, and I am guilty of it too) My son is now 9 - PANDAS was diagnosed at 6. Things are soooo much better. That seems to be the general outcome for these kids. Things were very dark that first year - but it is amazing how far we have come, and I am sure you will be fortunate enough to also look back one day and be so thankful for how much better your son is doing and all that you have learned from the journey. Sending good vibes your way.

Thank you all for your kind words and thoughts. I guess I just have to wait and see what happens. I will keep you posted.

Thanks Deedee, Thanks for the cyber hug! In Canada (in my experience) they don't seem to do the rapid strep test that I hear about so often here. You said exactly what my best friend told me this evening. I called her in a panic as well. She first said, don't worry it can't happen again - but that was not good enough - although I know she meant well. What really helped was when she told me if it happened again it WOULD NOT be the same experience. I have learned so much over the last 3 years - knowledge is power. I don't know what the odds are about having another PANDAS kid - I know it is genetic, boys are more likely to have it - and I have three boys so I have always in the back of my head tried to prepare myself. I am a different mom now then I was then, on so many levels. Thank you for your kind words. They really do mean so much. I will keep everyone posted - with hope it will only be good news - with no onset of symptoms for my middle son. I think these forums are so great as we are able to document these outcomes to help others. With hope I can say he is fine, then some other mom/dad down the road can read this and not worry quite so much in a similar situation.

Hi Everyone, Only you would all understand my stress. So...we have had lots of illness in the house since last Thursday - the little one had croup, then a cough that continues. My middle one had a high fever come out of nowhere on Sunday around noon. It was up to 104 and would go down to 102 on Advil. Monday was a Holiday, I considered going to the ER as his fever was still high Monday night - but after calling a nurse was told he should be ok to wait until the morning. His complaints were that he had a headache and felt hot/cold. Tuesday morning he came into the kitchen and appeared to do a hop - My heart dropped - he has NEVER had any tics of any kind - and I would not have even noticed the hop except it has been a tic my PANDAS son has had before. He may have just been hoping - but it was weird, sirens went off in my head, I asked if his throat hurt and he said no, I grabbed a flashlight and his throat looked terrible (why didn't I look sooner???? I would have for sure gone to the ER if I suspected strep.) I begged the doctor to see us right way and we were in by 11. I assumed he would give us antibiotics due to the fever for several days and what his throat looked like and the possible hop in light of the PANDAS in the family. But we had to do the swab and wait - 2 days! The fever continued but not as bad. I think he did another hop about an hour ago. The doctors office just called and said he has strep - so he will be starting antibiotics. My PANDAS son has been having more symptoms and we assumed it was due to the viral illnesses in the house, but we are increasing his antibiotics as well now that we know there has been strep. What is freaking me out is that my middle son is 6.5 and that is the usual time of onset of PANDAS - he has had an untreated strep infection. I cannot get these two hops out of my head. With my PANDAS son he did have transient tics leading up to the sudden/extreme onset, so I always hoped my other kids who have no tics to date may be out of the woods. I would appreciate any good thoughts/prayers in our direction.

Faith, There seems to be a tendency for PANDAS kids (from reading the forums the last few years) to have had a history of "always being sick" as babies/infants - just as my son was . He was constantly on antibiotics from 6 months to 2 years - so already had a weakened immune system. Literally - we would stop the 10 day course of antibiotics, then the next day he would spike a fever. He had the "touching tonsils" they were so huge all the time, and non stop double ear infections and he snored like crazy. He had the ENT surgery and from that day on he was not sick once (so I thought) Not one day of school missed - through nursery school, JK, and SK. So I think that when PANDAS moms have talked about their kids always being sick it has often been when they were younger. It would be interesting to take a poll. I just know in our experience, my thought is that it is NOT normal to never be sick - and it is clear that currently my son gets tics when others around him are sick - so I often wish if I could go back in time, that I would have paid attention to what else was going on in our household when my son had the transient tics from 3-6 - he was also a challenging kid at times, kind of ADHD ish. What I do know is the main tic he had was a throat clearing tic - which did not go away when he had the antibiotics for PANDAS - although I no longer cared about it as it was nothing compared to the sudden and severe onset of the multiple and complex tics he had - he continued with the throat clearing until we removed milk from his diet - 6 months after the diagnosis of PANDAS. The throat clearing has never come back. Milk is also supposed to be the culprit for ear infections for some - I wish I knew then what I know now. I would have removed milk a long time ago. I think these forums are so helpful as we all have our own experiences but there can be some similarities.

My son has been 100% tic free at times, but they still come and go with viral illness etc. His titers remain elevated - the lowest they have been is 450 ( I think) they slowly went down from about 1500. We are checking them again next week - we usually check every 6 months now. He hates the needle, and he has enough to deal with. I think after an infection they can stay elevated for 3-4 months ( I think the info is on the NIMH site). As my doctor has said it is best to look at the symptoms and try to ignore the numbers, but I still would love to see normal numbers one day. I have read that some kids just always have elevated titers (non PANDAS kids). In terms of symptoms and PANDAS I have read that even after the round of antibiotics it can take 3-4 months for all symptoms to go away. Personally, if it is truly PANDAS, I would go on prophylactic antibiotics in hopes of helping prevent a further infection - just my opinion. We really had no choice, every time we went off antibiotics, within 2 days we saw the increase in tics and they would just get worse until we went back on them again - there was a clear correlation. Even after 2 years when we did a trial off antibiotics a year ago it was a total disaster. We plan on remaining on antibiotics for a very long time, the ID clinic talks about 18 - the same practice as was with rheumatic fever. All of our kids are different and it is great your child is doing well even after 6 days off. Very good sign.

Your post that your son is "never sick" is interesting as you are looking for answers I will share our experience. I too thought my son was "never sick" He was from 6 months to 2 years with constant ear infections, throat infections etc. Then had the ENT surgery, tonsils, adenoids and tubes then was "never sick" What did start to happen was that he had transient tics from 3 to 6. Nothing major and nothing others would notice. Then at 6 had the sudden and extreme explosion of tics like nothing I had ever seen or could have imagined. What I believe now - is that when he would have the transient tics he was actually fighting something. His illness was just presenting as transient tics. I have three kids, he was my first. I realize now how UNUSUAL it is for a kid to "never get sick". It can be helpful to keep a journal of his symptoms, but also keep a journal of what else is going on in the house and environment. When my son was very sick with PANDAS in the first year we would see an increase in tics when is rained. Currently I have a house full of sick kids - my middle one was just testing for strep (get results today) he has had a high fever for 4 days and headache, my little one had croup and a bad cough - my PANDAS kid has had an increase in tics - no cough/cold/or feeling tired. His body shows illness differently. Also - when my PANDAS so had his initial onset - he did not present as sick other than in passing the week before say his throat was dry - he had a drink of water and we did not hear about it again. The immune system is so complicated. I agree with Kim's post on the other thread - TS is just an easy way to classify vocal and motor tics - but I think there can be so many underlying causes - it is just searching for them and correcting them. You are at the right place. I also agree with Kim about the impetigo - there is a clear connection to your child's tics and another child's illness. Don't forget PITANDS - illness triggered.

I stayed away from anything formal for the last 3 years for the fear of labeling etc. We always just talked with the teacher. What I learned is not all teachers are alike and not all will follow through with requests - even when they say they will - they are busy people and sometimes just forget - when something formal is not written down. This year I decided to do an IEP and am really glad we did. His accommodations are minimal and mostly environmental - lights in the classroom need to be reduced, he needs to sit near a window and he has to have an LCD computer and an LCD tv - this year they finally bought one - so I no longer have to take mine in. If he is a little sick he has difficulty remembering things like homework - so she will check his agenda to make sure he wrote down what needs to be done, if his letters are backwards (writing deteriorates when fighting anything) he will not be penalized - he has lost marks in spelling tests in the past when clearly it was just his backwards letters. I feel a weight lifted as I know the other teachers he has have to read his IEP so I do not have to chase people down and explain everything. We are lucky that we have not other issues other than PANDAS - my son is social, does well in school and sports and enjoys school.

Hi everyone, I am thinking of ordering Bonnie's vitamins - seems they have everything in them - and it would make life a little easier - less bottles of stuff around. I would love to hear how people like them - and also what dose you give - the recommended dose - or less? Seems like a lot of pills - I am hoping they are small. Thanks in advance,

Faith - yes my son increases in symptoms will viral illness - but does not usually show normal signs of viral illness (he is just started to - ie. runny nose, cough) but in the past he had NO symptoms other than tics. So my other two sons could have stomach flu, and he would have an increase in tics. He also does not "feel sick" So right now I have been sick for a couple of weeks, just getting better (cold/flu) my littlest one has croup and my PANDAS son has an increase in symptoms - and does not feel sick at all, not tired etc - I just wanted to lie in bed - he is up and playing hockey. So I try to explain to him that his body is telling him he is sick by his increase in habits - and he needs to listen and slow down etc. I also try to be more vigilant about foods when he has an increase in tics. I am much more lax than I used to be - it is just so much easier to give him bread for school lunches etc - and since he is doing so much better I have been letting it slide. I need to work on that. Regarding when PANDAS occurs - I think the official line is that it is usually at about 6 give or take a few months. But of course there will be exceptions and that is the average age of onset. My son was 6 years and one month. Trubiano - I agree with faith - best to go to a naturpath for the Elisa blood work - delayed sensitivity - often regular doctors or allergist do the prick test for immediate sensitivity - and many doctors don't believe in this stuff. Emma1 - This is hard! It is the hardest thing I have ever gone through, but the thing I am most proud of. I now have an answer if someone asks what my biggest accomplishment has been - it has been all that I have learned on this journey - and how I did not give up looking for answers, and how my son has benefited so much - my son is sooo much better today than he was when I started this journey - but I still check in daily, always looking for answers and seeing what other people are learning along the way - I am finding the posts from Michele about Dr. Murphy so interesting. Hoping everyone here takes some time to think of all the things they have to be thankful for. We are all blessed to be the mom's of our kids (and they are blessed to have us - searching for ways to help them) - and while the journey may seem dark at times with no silver lining - you will all find in time so many blessings that will come from this very difficult chapter in your family's lives.

Are you going to do the prednisone? If so - please report back on how he does.

I have to chime in here - while PANDAS is a illness caused by strep... it is first and foremost an auto-immune illness. The immune system becomes primed to overreact to strep and usually to ANY OTHER thing bugging it, which can include FOOD and ENVIRONMENTAL stuff. It took me a while to get this - and it was a good 6 months before we did the food testing as I could not believe the foods my son had ALWAYS been eating with no problem could be contributing to his illness. I was shocked to find he was sensitive to MANY things he ate daily and "for fun" decided to remove them - totally not believing it would make a difference for him - well it DID!!! My understanding of all of this is that the immune system is like a bucket - it can manage many things in small doses without overflowing - add in an infection then the bucket gets fuller and those foods it could manage before are now causing it to overflow. Doris Rapp talks about this in her book. Many here have talked about the improvements they have seen when removing certain foods - the big one being milk - Claire did a survey a few years ago here. Many doctors do not believe this stuff - but my feeling was I would try anything that could make him better - many doctors also feel we should just be treating our kids the way they treat the usual OCD and Tourettes - but our kids do not have this same illness, that would only be treating the symptom - not the root cause - which is the strep and in turn the immune system. Early on in my journey a special person on this site told me the key is the immune system - I read it and put it in the back of my head - but still just hoped the key was the right antibiotic and it would all go away. In the end she was right - the immune system is complicated but it is what needs to be focused on - through antibiotics - to keep further infections at bay - or to modulate as azith does - as well as keeping their bodies strong by giving good food, vitamins and probiotics and removing anything that could be causing the immune system to react.

Hi there, So sorry for what you are going through - you have come to the right place - to try and put the pieces of your puzzle together. There is a lot of info in the Tourettes/Tics Forum. Pandas - as you will know results in the sudden onset of either tics or OCD as well as other things, emotional lability, need to urinate often, ADHD type stuff. My son had a sudden onset of tics just before turning 6. We went through many antibiotics etc over the years - ultimately you will have to find what works best for your child. For us, we are now on azithromycin prophylactically, with good results. We also did some food sensitivity testing and removed those foods, gave probiotics and vitamins. Removed tv - then when we added it back used an LCD. I won't go into tons of details as you can read several of our stories on the other forum. Read all you can. There is lots of hope and as the years go by there is more info out there for new moms. Good Luck.

My son has PANDAS - he had chronic ear infections from 6 months to 2 years - and enlarged tonsils (touching). They did ENT surgery at 2 , tonsils and adenoids out and ear tubes in. He was diagnosed with PANDAS at 6 - very high titers - with no tonsils. Just our experience.

over the years a few PANDAS moms have posted their kids tics get worse on antibiotics - one reason could be an increase in yeast (make sure you are giving probiotics) another is artificial colour in the antibiotic - the kids immune system is usually so sensitive that things that in the past were fine will now cause a reaction. Also - if they think Pandas and one antibiotic does not work - then try another. Our kids are all so different - one thing does not work for everyone - although many are having success with azithromycin - I believe partly due to the immuno modulating effects. If you do a search on this site for HANDLE - I think you will come across some old posts about it. I think at least one mom talked about it a couple of years ago?

Hi Everyone, I keep hearing about coromega as the fish oil choice for PANDAS as suggested by Dr. Murphy. I checked their home page and there are many different flavors and packets etc. What is she recommending? Are they all the same quantities? I am wanting my younger kids on fish oil but they cannot swallow pills, this seems like a powder. What kind do your kids like? How much does the doctor recommend? Thanks in advance,

We had the high yeast with out OAT test as well. We gave lots of probiotics - maybe 6 a day - and we saw an improvement in his symptoms pretty quickly - coincidentally - a lump that had always been on his neck - since 2 - and always got even bigger when he was sick - went down for the first time. For the first 5 months of his illness he was on full dose antibiotics and we did not give any probiotics - I was new to the naturopath way and thought it was risky. Lots I have learned! My son was also sick all the time early after the PANDAS onset - sick not with normal symptoms - but with tics - when others around were sick. Their immune systems are so weak and any assault is 10 times worse for them - since their bucket it already full. We started to treat the increase in tics as a sign he was sick - and keep him home from school - or just do a half day. We felt it was his body's way of telling us he was sick. We used to do rewards for no tv - or taking pills. Checking off everyday and getting money for following through - then he could get something at the end of the week. He hated taking his pills at times - and sometimes we just let it go for a few days to give him a break - he would notice tics emerge and then ask to take his pills again. I have never heard of a connection between PANDAS and it evolving into Aspergers. Sounds like your son actually has symptoms of illness - ie, flu. My son never had any normal symptoms of illness - never a fever, sore throat, runny nose etc. If everyone in the house had a stomach flu - he would have an increase in tics.

We see an ID clinic and they have talked about the immuno modulating effects of azith. The proof is in the pudding - we see dramatic improvements even with viral infections when we increase azith. If my son has increased tics that stick around for awhile - we give a 5 day course and by the third day tics are gone - this is a consistent result we have seen. Probably once every 3-4 months we give a round of azith - usually when others in the house have been sick with a viral illness. We had the dramatic overnight onset, personality changes, handwriting, etc etc etc. Strep titers remained high, slowly coming down - PITANDS makes total sense to me - the strep titers remain elevated for my son so any attack on his immune system causes these already elevated antibodies to attack the brain. I am quite surprised by the info the assistant is giving. I truly believe in PITANDS.

Thanks so much Carole, I too picked up on her comment that azith is as good if not better than pen. I do hope studies come out soon to help clarify that statement - so people can share that info with their doctors. So nice to see you pop in. Hope things are well.