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That is great news. We are on the 500mg once every 5 days - he continues to do amazing, we are seeing a subtle increase the day before the day of and the day after the antibiotics then things clear up again, the increase is so minimal no one else could notice, I mostly notice at night when he is tired and falling asleep. There is a clear correlation between the antibiotics and how well he is doing. I wonder if we did it every 4 days if he would not have any subtle increase - I will ask the doctors at our next apt. I read someone's post recently saying they had been on azith. two times a week - I wanted to ask what dosage - I will have to look back and see who it was. So glad she is doing a bit better.

are you using probiotics along with the antibiotics? My son's tics increase early on after a long run of antibiotics and we realized it was due to yeast - once we battled the yeast the tics went away. We religiously use probiotics now to keep everything in check.

Hi there, There is also PITANDS - ped. illness triggered auto-immune disorder assoc. with strep. I had thought you needed the initial strep to cause the first onset of tics - but you could look into it a bit more. Sounds like illness is triggering him, so I would not be surprised if some other kind of bacterial infection is doing something. My son has increases of symptoms with viral illnesses. Ronna's son had a increase with chicken pox - again - all immune based. Have you thought of remaining on the antibiotics prophylactically? That is what many do with PANDAS. My son is on azithromycin once every 5 days. Good Luck.

Hi there, He is still on azith - we started in late August so it has not been too long but the results are amazing. I think kids DO outgrow PANDAS, when their immune systems develop - in hindsight we now think my older brother had PANDAS, and he outgrew it during his teenage years, my aunt had rheumatic fever, which is something that is outgrown as well. My thoughts on azithromycin are that the drug is not just preventing further strep infections but is acting as an immuno-modulator as well, dampening the immune response perhaps in terms of the strep titers acting up. Also I have read it has anti-inflamatory abilities so I wonder if that is also playing a part. I think there is still so much to learn, and the research is not there yet - in light of the small population affected. Remember this is an auto-immune disorder so I feel the key is working on the immune system to help it manage, I think our kids immune bucket is overflowing, so we need to remove some of the things they could normally manage - for my son going off milk made such a difference, although he had been drinking piles of milk for years with no symptoms of allergy, once the strep filled up his bucket so to speak so that it was overflowing we had to try to remove all the things that were contributing to his bucket but had not resulted in any symptoms all these years. Remembers also, PANDAS starts with the work pediatric, meaning childhood, so the title alone indicates it is something that affects kids - I 100% believe our kids will outgrow this and our job is to minimize symptoms as best we can while there immune systems are working themselves out. Good Luck - and try to stay positive - I know it is hard at times.

Hi Jacobsmom, I have read quite a few times that people have had good results with the penicillin. We used amoxycillin once a day for almost 2 years with quite good results, we went off the antibiotics as a trial, our son deteriorated significantly and amoxicillin no longer worked for him when we put him back on it, we tried several other antibotics with limited success and then tried azithromycin with wonderful amazing results. I think doctors prefer the pen/amox - to azithromycin, as I had asked my doctor about azith. quite a few times over the years, it was only used in the end as a last resort. I just wanted to mention that I have read that strep can remain on toothbrushes and tubes of toothpaste for several days - we now have toothpaste for each member of the family with their name on it, and toothbrushes are cleaned regularly and replaced more often than I used to. When we swabbed the whole family my youngest was positive for strep with no symtpoms - so I am trying to be extra cautious around spreading germs. Good Luck Pandamom - Sorry you have not seen significant changes by day 6 - how are things now?

So glad you are seeing an improvement - my son did play soccer last night and was none worse for wear today - today no vocal stuff when eating - so no vocal stuff at all! Can't believe we had a summer of once a second vocal stuff. Today is his antibiotic day - he still has some minor eye stuff but it really is more like an eye irritation, and is mostly when watching tv - even though it is an LCD. My son woke up early on his own today, after a later night and doing homework after soccer - his choice as we said he could do it all tonight, but he wanted to spread it out. He has chosen to start coming home at lunch and I think this is helping too - he is eating a good meal and having a short break. I feel like my son continues to do better and better as time is passing on the azithromycin. I was telling a friend today that I feel he has been more stable the last few weeks than any time over the last two years. Stable not just tic-free wise but emotionally, we are not having the ups and downs we have had before. I am going to do some research on azithromycin's use with Cystic Fibrosis patients as an immuno-modulator. I am starting to become convinced that the drug is modulating his immune system somehow. We are thrilled with the results, and Ronna has also had great results, it would be great if you do as well - as we would be seeing a clear pattern and be able to point other PANDAS moms in this direction to try. Keep us posted. So glad our story is helping give you hope! I know Ronna's posts gave me so much hope early on as well.

HI Pandamom What you are doing is exactly what we are doing, and started at the end of August - we have seen amazing results - in all areas - vocal tic 100% gone (well 99.9% - comes back very softly when eating a times, but only a couple times a meal - not every second and not loud -no one would notice) Behaviour is so stable, he is on such an even keel - he came bouncing out of school yesterday - running full spead. He may even go to soccer tonight, and has not played all summer. Good Luck - keep us posted. We saw a significant improvement by day 3 - but saw some improvement even overnight the first day. By day 10 - 100% tic free - eye stuff has come back in a subtle way - with lights at school - but even that is going away now.

Hi everyone, I just wanted to update, seems there are a few new PANDAS mom's joining - we continue on azithromycin once every 5 days( dropped to this dose last week) - our son had been symptom free starting school (while on full dose) and then had some eye tics from the lights. More lights have been turned out and his desk moved and the eye tics are going away - they are not extreme - but still there. Vocal stuff was 100% gone on full dose azith. By day 4 off azith we heard some vocal stuff come back, it decreased again after the dose of azith. His next dose it on Saturday. He is not 100% free of tics, but doing well - most of the time tics are subtle. We saw the infectious disease specialists again and they were agreeable to running some tests ( thanks Mustang Carole!!) We are also going to be referred to immunology and neurology - so I am happy about that - mostly the immunology. We are also scheduled to see rhueumatology in November. I am really happy we have to date not needed to use meds - but never say never. I am concerned that if tics get worse again, and we have tried everything, that I may have to try that route, very cautiously. As my son gets older I recognize the impact tics could have on him socially - to date when he has had tics, no one has noticed ( even in the early PANDAS days when they were NOT subtle) I am really getting so tired of all of this. But thank goodness for the internet and all of the support I have found here. I went in today with a list of questions and a list of tests I was requesting. The doctors were so kind and recognized my need to not leave a stone unturned. I figured the worst that could happen was they would say no to me. I could not have asked for a more positive outcome of our appt today. Good luck to all the new PANDAS mom, keep searching for answers and advocating for your kids.

I think the other key thing to remember about PANDAS is the sudden onset or exacerbation of symptoms along with the strep infection. We can pin point the exact day of the sudden onset - and when I say sudden and severe I am not exaggerating - he had complex motor and vocal tics that were constant, his body was never not in motion, tics I had never seen in my life, even on tv. The other key thing is that there is a significant improvement when on the correct antibiotic. Within 72 hours his tics decreased 90%. The first few days he could not go out of the house, by day 4 no one would have noticed anything at all. PITANDS - seems to come along with PANDAS often - which is illness triggered symptoms. I think once the strep has done it's number than the immune system is all messed up. Other things that can come along with PANDAS kids when they are sick - joint pain, handwriting problems ( my son's letters and numbers go backwards when he is sick), emotional lability, separation anxiety, trouble sleeping, needing to go to the bathroom more. If you go on the NIMH web site you will find the things needed to be diagnosed. Just google NIMH PANDAS and it should come up to the website. Many many many kids get strep - and many have transient tics, but I think the criteria is clear on the NIMH website around the sudden onset of symptoms along with the improvement once on antibiotics. If you have TS or transient tics, my understanding is antibiotics would not result in an improvement in symptoms. I do think however that there may have been many many people who had PANDAS before it was known, then over time perhaps the assault on the basal ganglia eventually resulted in the diagnosis of TS. Just my thoughts.

Hi Evie, We did do the ELISA testing and he was sensitive to gluten, dairy, soy and eggs - so removed all of that from his diet. We then started to re-introduce gluten - he is still 100% dairy free and soy free but not 100 gluten free, he has bread for school lunches ( although just 1/2 a sandwhich) I still do all the baking of muffins, granola bars etc -with rice flour. We did see a real improvement when we removed the foods and did gradually re-introduce with no problem - we are still trying to be mindful of his gluten consumption. Going dairy free is easy, the gluten free is a challenge - we did it 100% for about 6 months. Hope the azithromyicn kicks in - we did notice a difference pretty immediately, by day 3 it was significant. Have you seen an immunologist?

Hi there, We have never used meds for our son. He has been on antibiotics for the last 2 years. We had a very dramatic overnight onset of symptoms when he had just turned 6. Going off them this summer was a disaster. With PANDAS the root cause is the infection, if you figure that out then the symptoms should get better. I think the immune system is just soooo complicated. I think the meds just get to the symptom, not the root cause. That is my opinion anyway. I think there is still so much to learn about this. We are currently on azithromycin and I would say he is 99% symptom free - and the 1% is only noticed by me! 2 weeks ago we did not think he would be able to start school. Good Luck with whatever you decide to do. I imagine the age of your child would also factor in - as they get older they want to be more "normal" - whatever that is! When was he diagnosed with PANDAS. What are his titers like now? Did antibiotics clear things up initially?

Hi everyone, Just a short response - I am soooo tired, eyes stinging kind of tired. This has taken a toll on me - can't sleep at night, up in the middle of the night searching for answers on the computer. Anyway- just wanted to give a quick update - things are amazing - he is doing so well. The doctor gave the go ahead for a longer run on the azithromycin - I think I may add on another couple days to get us to the first day of school, then may slowly move to the prophylactic dose - not waiting a full 5 days the first time. He is so happy, he went skating today for about a half hour - I had forgotten how he sounded when he laughed, I did not realize how little he has laughed in recent weeks - it is like he has come alive again. Not just lethargic - I am sure all the antibiotics did a number on his system. The vocal tic is at a minimum - no one would notice it at all, it was always worst when he ate, I often had to leave the room it made me so nuts, I think he made one noise through all of dinner tonight - and at that it was soft. He was hiding on me this evening in his room - I could not hear a thing - silence. He has been doing a little eye stuff, very subtle looking down - no one would notice - and I am not caring about that - compared to the once a second loud squeak - this is nothing. I will re-read your posts as I know I have wanted to reply to specific things in them, but have been too tired to start a response - but am reading everything. Thank you all so much for all of the support you have shown me.

Thanks Kim, I am hoping to get some answers from the infectious disease clinic and rheumatology - I am really hoping they do some immunology panels so we can better understand what is going on. All we know is he has had high ASO titers. He is not doing as well today as yesterday - he started to decline last night after playing outside - not sure if it was fatigue, allergies, or the antibiotic not working as well. We are still on the full dose, we added in a few extra days - I had tried to get in touch with the doctor for approval of this but did not hear back so went ahead - now I am scared to go to the prophylactic dose even more. I have had an upset stomach as did my husband so the increase could also be a viral thing as he was not very hungry over the last few days. I have to say that today I went out back to school shopping with him and he almost seemed better on the drive home than the drive there - I hate this... I added in allergy medication incase the increase was from something outside yesterday - my husbands allergies have been bad recently. I met with his teacher today and she seemed like she will be fine with the floresent lights being off and me bringing in the tv etc. Thanks you again for the time you have taken replying to my posts. I will keep you posted... Just wanted to add...regarding PANDAS - it is thought to be something that these kids will outgrow - it is a pediatric illness. My fear is any possible permanent damage being done to the basal ganglia. My doctor has a few patients who have PANDAS - different treatments have worked for different kids. Some choose meds to deal with the symptoms. That would be my last resort - but never say never.

Thanks Kim - I will have to read read the last post a few more times until I fully understand it. Your post from last night hit the nail on the head - the two things I am concerned about in light of his titers is that we never fully eradicate the strep - or he is re-infected from exposure- which is why when my youngest tested positive for strep with no symptoms we thought he might be a carrier. We have now swabbed him twice since the antibiotics and he was negative both times - so the doctor says he is not a carrier - I do remember your comment at the time that your son would be positive a few months later so I will re-test again in a couple of months. I am sure you understand the info you have posted for me far better than I do - any advise for me??? Does the info you have provided mean ultimately all antibiotics could stop working and then we are out of luck? I am going to re-read it all once the kids are in bed.

Hi Kim, Thank you so much for the info! You continue to amaze me. I had found the info on the 68 hour half life, I have also read 63 hour. I am assuming a full life is not always double the half life - but even so, 68 hours x 2 is really just 5 days. Ronna has advised she found her son symptomatic waiting the full 7 days. I think I will start at the 5 day prophylactic dose and see how he does and maybe increase after a few weeks by one day. I have a tremendous fear of him deteriorating as he has done so many times when he goes off or lowers the dose of antibiotics, then it seems adding back in the antibiotic that had been working, they no longer work. It feels like we are creating some sort of super bug in him. He is doing really well right now - at the point where no one would notice anything. Big change from a once a second vocal tic. Regarding the titers, my concern is that with PANDAS the idea is the strep antibodies react with the basal ganglia - and if they are still elevated than any insult on the immune system will kick them into actions. The bucket theory. My son's remain at about 600 - normal on the test he did was under 65 although I have seen normal as under 200 as well. I am thinking, since he has these antibodies that are not going down, then anytime his immune system is bothered they are ready to attack the brain. If they were down to a normal level - then we would not see tics emerge from pizza lunch etc. He has been on prophylactic antibiotics for almost 2 years - why are these antibodies not going down? I wrote to NIMH to ask and got a reply that consisted of some research papers - ultimately saying they can stay elevated for up to 6 months - but this is 2 years later. We are going to be going back to the infectious disease clinic so I will ask them about these titers. Thanks so much for the time you spent finding the info - you are a pro. It took me several nights to finally figure our the half life info! I am so thrilled with how well he is doing right now, and thank you all for your support - and for Ronna and Mustang Carole for pointing me in the right direction in recent weeks. I am so fortunate that we live in times when we can learn from others through the internet.

Just another update - we decided to switch to azithromycin - symptoms had hit a plateau with the amozycillin and cefxil - the vocal tic was atleast once a minute- better than once a second which it had been but not where we want him to be - when we have seen him free of all tics. We started Thursday night- we have already seen a great improvement. Tics are quieter, and further apart - much more subtle. We are at about 48 hours so with hope he will continue to improve. I am really concerned about going off after the 5 day course on monday - since we have seen him decline so many times when we drop down the dose (although this is the first time on this drug ever), I am having trouble wrapping my head around the prophylactic dose being once a week at 500mg as per the study. How does the med stay in and be effective that long? 7 days is a long time. I have been searching and searching the net and finding nothing, I am not sure if I am looking at the wrong places our googling the wrong words. I know there are some super moms and dads here - who seem to be able to process this info so much better than me - any help would be appreciated. Thanks in advance, We will be seeing the infectious disease specialist again and a rheumatologist. I am trying to figure out how he could still have any infection after so many years of antibiotics. And could the antibitiotic be interacting with the antibodies - rather than an infection. And most of all why his strep titers remain elevated after 2 years.

Hi Ronna, I PM'd you but wanted to write here too to make sure you did not miss it - just about clarification of dose for azithromycin. I won't repeat it all here - please check you PM. Thanks!

Hi Ronna and welcome back! So glad Kurt is doing well - I had read the article you had posted - and had given it to my doctor. We had decided to try going off the antibiotics as a trial - hoping he was now stronger, older etc. Clearly it was a bad experiment! When we went to the prophylactic dose of the amoxycxillin at the 10 day mark (just after my last post) and continued on the cefxil full dose as we were only on day 4 of that - he deteriorated before our eyes which was so shocking - we assumed the amoxycillin was doing nothing since 7 days on it full dose did nothing for him. Anyway, we added back in the full amoxycillin and he starting improving immediately. So now - it seems to be taking the two in combination to get him better. ( The two on their own seem to do nothing) We are on day 6 of both together again with a plan to do it for 14 days and see how he is doing. It is hard timing them all - and making sure we get lots of probioitics. I have asked my doctor about the azythrimycin a few times and he does not seem to like that drug - he said on full dose it is given 4 times a day - maybe I said zynthrimycin - my head is spinning. Did you go on a full dose first for a 10 day cycle then drop down to once a week? I will let him know about what you are doing when I go in and see him next week. At this point I feel the amoxycillin will not work prophylactically - at least that is my fear. I will keep you posted. Thanks so much for your reply.

Hi Giselle, No advise on stores in London, just wanted to wish you a fabulous and safe trip. What a fun place to visit.

Good News update....the cefzil has been amazing - squeaks got a little better on day one and two and day three a.m.still improving - but still frequent, every few minutes ( better than every second) , but at the 72 hour mark the change was incredible. Tics became moresubtle sounds ( squeaks ) and more infrequent - he had a cavity filled yesterday, we were at the dentist for a good 1/2 hour, I noticed one subtle tic the whole time - on the drive home he was silent ( the last fews days he has been silent only when reading) I assumed he was reading in the car, and asked how the book was, he said he was just looking out the window. This morning when he woke up I had a 15 minute conversation with him without a sound. Last week I could hear squeaks from him by the second the moment he woke up. Even during the night if he was waking up for a second and falling asleep he would squeak ( we were in a cabin all together last week) I have been out all day but my husband says he has been good, a few flurries here and there - but nothing like what we had been experiencing. He is now finished the 10 day amoxycillin full dose so will continue that prophylactically - then continue on cefzil full dose for the 10 days - I will call the doctor monday to see how long we will keep him on it. Fingers crossed he continues to get even better - although I am thrilled with where his is now. Hope I did not jinx it by writing about it! So glad there is this forum - with hope our experience will help someone down the road just as Ronna has helped us so much by writing about her experience.

Just another update - for future and current PANDAS's moms. My son's squeaks got worse again, they seemed to be getting better the 2nd day of antibiotics, and slowly got better for a few days after that - as much as 45 seconds between sounds - from 1-2 seconds. Then they got worse again along with some behaviour things, lack of impulse control, being a little rude ( not like him) so we saw the doctor yesterday - he will continue on the full dose of amoxycllin until Saturday when the 10 days is up, then go prophylactically - but we also added a full dose of cefzil - one we have not tried to date ( although I remember when he was little it did not work for his ear infections) We tried it based on Ronna's posts about Keflex - I guess this is in the same family - but the doctor felt it would be better - and is only taken 2 times day. Re-reading Ronna's posts last night I saw Keflex eventually stopped working for her son. I am wondering if the same is happening for us and amoxycillin. He is definitely better today than he has been for the last week - but I will reserve judgment - usually we have found on the 2nd-3rd day we have seen a complete or almost complete recovery from the tics. Fingers crossed I will have some good news in the days to come.... His blood work from last week came back at 620 for ASO titers, up a little from the last test which was 590. 590 is the lowest he has been.

Thought an update was in order. We are back on antibiotics, my son deteriorated over the last few weeks since being off the antibiotics to a point I was not comfortable anymore, two nights ago he was sqeuaking every second for over 4 hours. Through the day he had this vocal squeak every 3-5 seconds. It was loud and intrusive - and would not work well in a school environment. I had called the naturopath last week to see if there was anything else we could do and we did start some homeopathic drops - not sure if this was a healing crisis or not, but ultimately since being off the antibiotics he has not stopped having vocal tics through the day that in my mind were not very subtle. While on antibiotics he certainly had weeks of being tic free and when he did have tics with illness they were very subtle. We did start the vitamins mentioned in the article by Mustang Carol. Yesterday we went back to the doctor, re-swabbed my oldest and youngest and did the ASO titers blood work on my oldest. Our plan is to re-test in 8 weeks - my doctor agreed that trying the vitamins listed in the article was fine and he wanted to do the re-test to see if we saw a difference in titers. He continues to be stumped - and was agreeable to going back on the antibiotics. He started the antibiotics yesterday afternoon and by evening he was 50%-70% improved, I only heard about 10 squeaks as he was going to bed, much different that 1 a second (no exaggeration here!) This morning there were a few squeaks but no eye squints at all ( a new tic that was emerging yesterday and the day before) My naturopath is away right now so we decided to stop the homeopathic drops and wait until she returns to see if we can just continue them while on antibiotics as well. I will post the results of the swabs and the titers when we get them.

Hi Deanna, I am sure others are more well versed on this issue, but thought I would answer as well. In terms of the foods not being an issue in the past then becoming an issue, I think this speaks to the idea of the bucket overflowing. So, when there is a strep infection or something else causing the immune system to react, the further reaction of the food tips the scales, whereas when there is not an infection, the food may be causing a reaction, but not one that is noticeable - the bucket is filling but not overflowing. In terms of re-testing, we have only tested once, and over time were able to add in gluten without any reaction - we have not re-tested nor do I think we will, it is not a cheap test to do. I have read that by healing the gut that food intolerances improve. We have found that pizza does not usually cause any reaction anymore, and in the beginning he would react 2 days after eating it on the pizza day at school. So his body as it is healing is able to manage more things. We still have not added dairy back into his regular diet nor do I expect to anytime soon - but being gluten free was really difficult, so I was glad when we were able to start adding in some gluten. Carolyn- my son tested positive to many foods that he had never had before. We have only tested once.

Thought I would update. The tics subsided again with increased probiotics. He completed the 10 day course of antibiotics. My younger son re-swabbed after his 10 days and was negative. Unfortunately off the antibiotics my son started to have tics, on a regular basis, and although not full blown at all they were no longer the very subtle one's we had seen when he was sick with a viral illness or ate foods that he was sensitive to. So...we have decided to ride it out for a little longer (only since it is summer), and are trying some homeopathic things. We will take him and his brother back to get re-swabbed probably next week and also re-do the strep titer testing. If he is not back to where he was prior to going off the antibiotics (tic wise) or at least going in the right direction I think I will be very tempted to go back on the antibiotics again for the school year and try again next summer.... I was happy to read Mustang Carol's post on the Vit A, Vit E and Vit C. I think I will try and have him start on these. He already takes vitamin C. I think Marie would be interested to read about the beta-carotene, being such a carrot juicer. I hope she and her sons are well, we have not heard from her for a while. With hope no news is good news.

Thanks for posting this! I will show my doctor and naturopath, and will be off to the vitamin store tomorrow! On-going elevated strep titers seem to be an ongoing theme for Pandas kids. I have always said to my doctors, if we could only bring those titers to a normal level, he would not have symptoms anymore when his immune system in challenged by the enviroment, foods, viral illnesses etc. It is those antibodies that are attacking the brain, not the infection itself.