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Did you give probiotics with the penecilllin? If not - then he may have an overgrowth of yeast - causing the reaction.

Michele - one of the common symptoms of PANDAS that is documented is the need to urinate often.

tlkinser, So sorry for what you are dealing with. I know how hard it is to deal with the once a second vocal sounds. It is totally normal to feel like you just need to get away from it - and you should give yourself some breaks. If he was diagnosed with PANDAS does that mean antibiotics made a difference at one point? Why is he not on antibiotics now??? I am sure you have read a lot about azith here. While my sons titers remain elevated my doctor feels that in the end that the titers are not as important as treating the symptoms that are being seen. Your son does not sound like he is doing well right now - will your doctor let you try antibiotics again to see if it will make a difference. (sorry if you have already posted - I have been away most of the summer an not in tune with who is who)

I am not aware of any article that says azith is better than amox. I do think amox is still the preferred choice by doctors and immunologists. The only reason we got the ok for the azith is that the amox. was no longer working. If people are getting good results from amox it makes sense to continue with that treatment, and then have the azith in your back pocket incase amox stops working. The fear for us is if the azith stops working I am not sure we will have any other options. I think you just have to advocate for your son - go with info from web sites such as this - about how others are doing well on azith. Beg for a trial of azith if you think it might work - if it is working it tends to work pretty immediately - a big difference is usually seen within the week - we noticed an improvement within 24-48 hours. Ask the doctor to explain if there are any risks of trying the azith for a 5 day course - if he cannot come up with any then beg to give it a try based on info you are reading. Is your son on probiotics as well - I am sure you have mentioned if he is - it is really important with daily antibiotic use.

I am so sorry for what you and your family are going through. Many of us here have gone through similar things - at varying degrees. No matter the degree it is shocking to see our children change before our eyes. Chemar is right that azith seems to be working best for PANDAS kids. I am trying to understand why your ped. would not agree with a PANDAS diagnosis if everyone else is saying he has PANDAS - including Susan Swedo herslelf!!! How was the PANDAS diagnosed? Has he had the ASO titers tested? What are his numbers like now? Sorry if you have already answered this. I get everyone mixed up at times. What stands out to me is all of the "treatment" your son has had getting has been to treat the symptoms that come from PANDAS - but not the root cause - the strep. All of these anti-psychotic meds will attempt to treat the symptom - but many here have indicated their kids have had an even worse reaction to these meds. We have never used anything but antibiotics - although early on chlonodine was offered as a way to treat the illness - I fought against it as again it seemed that would only treat the symptom. Antibiotics are needed to get rid of the strep - some seem to have success with just treating with a round of antibiotics - that did not work for us - every time we stopped using the antibiotics his symptoms came back. We are currently on azithromycin every 5 days with very good results. As Chemar says - it is preventing further infections as well as and more importantly (in my opinion) also working as a immuno modulator. Early on in my sons illness we did some testing for foods/allergies and found he was sensitive to many foods he ate daily (shocking) while for a normal kid this was ok - for him, with his immune system so out of whack - we needed to reduce any stress on his system so removed those foods - also started vitamins. We also found other triggers such as CRT screen tv and flourescent lights. You say he is in a study where he gets no treatment but just gets followed. That would be something I would really have trouble with. I would need to look for treatment - I really think waiting to deal with the root cause could be damaging long term. I have also thought if left untreated - that the brain continues to be attacked and then there is potential for permanent damage - luckily I do feel our kids are young and that they will bounce back - with the correct treatment. My son is a totally different kid now than when he first got sick. He is so happy, healthy, focused etc. No more emotional lability - he does tic at times when sick - or exposed to allergens - but those tics are so minimal often I am the only one to notice - even my husband doesn't. So - there is hope - my son could not go out in public when he first go sick - his tics were extreme - with an overnight onset. Keep searching for someone who will let you try a round of azithromycin (at least that is what I would do). I spent every free moment researching this illness - and begged the doctors for antibiotics. Best of Luck - at such a difficult time. Have faith that things will get better - hard to imagine now - but our kids will bounce back - and one day this will be a part of your past. And somehow - it will have made you all so much stronger. I have a totally different outlook on life as a result of this experience. I find I am a happier person too - much more content and so thankful for little things. When we first started the journey I was so angry and upset - why my child, why us - what good could come out of this - I could not see any way that there would be a silver lining. I certainly wish my son did not have to go through this for me to learn the lessons I have learned - but I am thankful for the inner peace I have found.

Hi tlkinser, My son actually does not test positive for strep with the throat swab - the only time he did was when we had the original onset at 6 - my doctor said with him on antibiotics all the time it may skew the throat culture - he has had extremely elevated strep titers since the onset - going down slowly but surely. I took in an article from the NIMH site on azithromycin (you can click on the publications on the site- Ronna has also posted this here before) - at the time we had taken my son off amoxycillin as a trial (since he had been doing well) and it was a disaster - within 7 days we were putting him back on it but it no longer seemed to work - we tried many antibiotics and had all but given up - then the doctor humored me and agreed to try this as the last one - and within 24 hours things got better, and then by the end of the run he was 100% tic free. He does still have tics at times but they are minor and not really noticed by anyone - and he no longer has any emotional lability. He is one happy kid! Azithromycin works as am immuno modulator as well - which I think is making such a difference for him. I just pray that it continues to work for a few more years until we are through puberty. Absolutely - I don't think a trial run of azith can't hurt- I would beg for it. We saw a difference very quickly - and it has been life changing for us all. Michele - I would just beg the immunologist to try it. My doctor was very open and I went with lots of research from the beginning. Initially when my son was first sick he was reluctant to agree to long term antibiotics - I went with any info I could - a big binder of even stuff from this site. In the end we saw an infectious disease specialist who agreed to the long term use of antibiotics - originally amox and now azith. We had our last appointment a few months ago and he figured we would be on it for many more years. After our bad experience of trying going off the antibiotics I am in no rush to try again.

my son has PANDAS (and PITANDS) - any assault on his immune system causes tics - less and less as he is getting older. He is on azithromycin and has been for a year with good results. Before that he was 2 years on amox. We find tics can start in the spring from seasonal allergies - and have had good results with aerius. We did try benadryl for a while - but find aerius seems to work better for him. Our doctors said it was find to give daily for the summer months - which is what we do - we stopped a week or so ago - and started back today - he was clearly doing better when on it.

Just wanted to add- azithromycin is not just used for preventing the infection but it also has an immuno modulating effects - which is why I am guessing it works so well with PANDAS kids. I would check his titers for sure ( do not rely just on the swab - since he is already on antibiotics there is a good chance you would get a false result). He could just have another infection or something else bugging his immune system causing the symptoms. It is good his symptoms are not quite as severe - you said no tics this time. I like to think that means his body is managing this assault on his immune system a little better than it did the last time. My son is on the same dose as Ronna's. He is 9 now.

Hi Michele. Someone named Heather ( I think) used to post here - her son got MUCH worse on antibiotics too. You can search for her posts. In the end I think she believed it was due to the increase in yeast due to the antibiotics - are you using probiotics? The other culprit may be the color in the antibiotics. Or it may be that he just needs a different antibiotic. On the correct antibiotic - PANDAS kids should get better not worse.

Hi Deedee, That is wonderful news. I am so happy for you and your son. After reading your post just before lunch I made sure to give my PANDAS son EFA. I had not been giving them to him for months and months and months - he went through a time where he was refusing to take the vitamins so I let it go - currently he is agreeable to a multi and probiotics (never up for negotiation) and his usual azith every 5 days. He took the EFA with no problem today and I will get back to giving it to him. We are on azith and have been for almost a year with good results. Amox stopped working all together for us. We went off it as a test, things got bad quickly and then we went back on amox and he did not get better. I am hoping the azith continues to work for him long term - he is turning 9 this summer - so we have been dealing with this for 3 years now. So glad amox is working for your son - it is nice that you know you always have azith in your back pocket if you need it - I am worried that if azith stops working for us we won't have anything. Hoping and praying it never comes to that.

yes - in my sons case the infection was the big one! In her book she talks about it actually putting a hole in the side of the bucket. I don't think you have to pinpoint anything - and it may not be possible to either, it may have just been a number of things at one time - so now you know her bucket is full or overflowing (assuming she has symptoms) so keep trying to empty her bucket a little at a time. When it is emptied out more - then the cotton candy may be no problem. For the first year my son could not have any pizza without having a reaction that lasted a few days - as he has gotten better he is now allowed pizza lunch again and has no reaction anymore. So - things can get better. With the food - we often found the reaction was not immediate but the next day. Food sensitivities can occur anywhere from immediately to 3 days later (if I recall correctly) That is why removing foods from your diet you need to do it for more than three days to see the results. We found within the week their was obvious improvement - actually within the three days.

I always go back to my (Doris Rapps) bucket theory. As I had the same questions as you did - my son has PANDAS - then we found out foods were causing problems that he had ate before with no problem - bucket theory is basically think of your kids immune system as a bucket - it can take a little of all the things that could cause a reaction - without it causing any problem, but add something else into the mix - like an infection, or growth spurt or something else that causes a big reaction - now those small amounts of milk etc make the bucket overflow - causing tics, whereas without the infection, the bucket had room for some of the milk - or whatever. We find my son tics more if he is sick - so foods that he can be fine with when he is well, then cause a reaction when he is sick - because his bucket is already full - we also find this true for the tv - when he is well he can watch tv no problem, if he is already sick we have to limit the tv. I think the body is sooo complex - this theory just seems to fit my son - and it does make a lot of sense to me. Hope I have explained it ok - you could always read up on Doris Rapp.

give probiotics at least two hours before or after the antibiotics. Good Luck - hope he feels better soon.

Hi Deedee, My PANDAS son has had high titers for a long time. When he initially got sick we did both blood tests and both were high - I think 7-800 for the titers. That was in August 04 (wow - that is a long time ago), then in January 05 we re-tested and at the time he was doing much better - they were 1200 - I was shocked. My understanding now - is that when first tested at 700 it was just when he had a strep infection - the numbers rise over a few weeks - so now I think they probably rose to a much higher level ( I have read they can be up at 2000), then when we retested they were probably coming down - to the 1200 number - so if we had tested in Sept/Oct we probably would have seen the really high numbers. That is just my best guess. Anyway - we continued on antibiotics - and then over time the numbers came down to 700, then I think then around 600 a few times, at the beginning of last summer I think they were in the 650 range, then we started azith in August of this year, and re-tested probably in November and they were down to 400's - the first significant drop in a long time. My doctor says not to pay too much attention to the numbers, but I like seeing them come down. We will re-test in the summer. Good Luck at the clinic - looking forward to an update.

That is great that you saw such a reduction on azithromycin - similar to our experience. I found at the beginning we would start to see tics emerge after 3-4 days, then on the 5th we started to give azith, then they would reduce again. This was a pattern but as the weeks went on the increase in tics before the antibiotics decreased to the point where we would start to forget to give the azith as he was symptom free - early on we knew the day was coming up as minor tics would emerge. My son's titers remained elevated for two years - it was only after starting azith we actually saw a significant decrease - from about 750 to 450. We have not tested since about October or so - we plan on retesting in the summer. Will your doctor allow you to go on a prophylactic dose on azith?

Hi Mike, As Chemar said, dosages of prophylactic use should be made by a doctor. Azith is given once a week as it's half life is really long - so it continues to work in the system for days after being given - when my son was on amoxycillin it was given once a day as it has a short half life. The dosages changed as he got bigger - from 5 ml a day to 7ml a day. I would ask you doctor for the appropriate dose to work. Good Luck.

Thanks Faith and Chemar, It was only recently I started thinking of it more as OCD and that does make more sense - he has also been sick (viral cold) - we are noticing an increase in this OCD type stuff than tics - so I wonder if as he is getting better the way the brain is affected when he is sick is changing a little and resulting in more OCD than the tics??? Whatever it is - as you say it is no big deal. Nothing like the tics we lived with early on in this journey. Thanks for sharing.

Chemar, Was your response that you don't think it is stimming to all of us or just to the Deedee and Patty? Not sure if you missed my post? I has read the info you posted before - Kim's post is interesting - as not just stimming to stimulate but to almost calm down when overstimulated. Either way what he is doing is pretty harmless and does not bother him nor us nor do others probably notice. Still would like your feedback as to if it seems OCD or stimming.

When you removed milk what did you replace it with? If is was SOY - something like 30% of those allergic to casein/milk are also allergic to soy. My son had a throat clearing tic from ages 3-6 then the PANDAS onset of severe and sudden tics - on antibiotics all tics went away except the throat clearing one - which we were then happy to live with - amazingly after removing dairy from his diet this tic went away - so now I think it was more an allergy than a tic for all of those years.

I have been meaning to ask about this as well. My son started doing something a few months ago - that I would not describe as a tic, as it is fluid and not jerky. He moves his hand in front of his face - often with one finger up - so - kind of like pointing his index finger up then passing it in front of his face. I notice it but don't think anyone else would. I notice even when he is running, he will pass his hand over his face, to others it would look like he was just running normally - pumping his arms but every few strides one hand would pump higher and he would put it more in his sight line. He is doing track now - and I noticed that before he starts to run to do long jump - etc, he does this before he starts - again no one would notice but me. I had looked into stimming a few months ago - as he told me he did it because it makes his eyes feel good - like he is scratching them. When I copy what he does it does cause a little air to pass by the eyes. I decided to not freak about about it and let it be - not such a big deal and I am sure it will pass - he continues to be happy and healthy otherwise. Yesterday when watching him I started wondering if it is more an OCD thing - which he has not really had before. He has been ticcish for a number of weeks now - we did an increase of antibiotics that helped - he was sick with a cold, and allergy season is upon us - and I think he is having a growth spurt - all of which is probably putting his body out of whack. Any input would be appreciated - has anyone else had this? Chemar - how do you distinguish stimming from OCD induced tics, and tic induced OCD? Does this sound like stimming to you or OCD - I just don't see it as a tic. Thanks in advance

We have seen an increase with growth spurts in the past - also with teeth coming in.

The article from NIMH that Ronna is referring to recommends 500mg of azith once a week. We do it every 5 days instead as at the beginning would see symptoms start to appear on day 4 and 5. There have now been many times I have forgotten to give the medicine and he has been fine - whereas before I could see the subtle tics start so knew it was time for the next dose. He like Ronna's son seems to have a hard time this time of year - with probably the added stress of allergies - he has actually had symptoms more so than usual this last week and has been off school - we have all also been sick. A couple of days ago we went on a full dose of azith - also started allergy medicine and added some vitamins back into his routine (he was down to just a multi) - he now seems pretty close to tic free again and was back at school yesterday and playing soccer last night. So I am assuming it was mostly the azith that calmed things down - so again showing its immunomodulating effects.

Just a quick reply... We also saw a change within a 24 hour period after starting azith - going from a once a second vocal tic to several minutes between them, (can't remember all the details now - whether it was 5 minutes or 15 - either way it was a HUGE improvement - by day 5 they were probably 95% gone - we stayed on for about 10 days as school was starting - and by then he was 100% tic free. We have had great results with azith - tics do still come and go with viral illness - PITANDS - but they are not severe, mostly unnoticeable to everyone but me - and when they do drag on for a period of time due to illness we just up the dose of azith and things settle down again. Regarding specialists - we have seen them all. I think the key is just having one doctor willing to listen and learn and run some tests within reason. Our doctor has been amazing - we initially were testing titers every 3 months or so - his titers remained very elevated - a year after the onset they were still around 700. We had them tested in the early summer and they were about 650 - we tested around November and they were at about 400 - the first significant drop we had seen for a long time. All the doctors we have seen admit they really don't understand this - the body is complex and there is still so much to learn. The use of azith as an immuno modulator has been around for CF and some testing for Asthma and I am sure other things - the specialists we have seen since starting azith and having such good results just tell us to keep on doing what we are doing - they are just happy that something is working so well for him. I have read titers can remain elevated in a normal strep infection for up to 4 months - I think with all the molecular mimicry going on with PANDAS that the titers remain elevated as they continue to think they need to be elevated to deal with the mistaken target - the basal ganglia. Just how I put it together. There really should be no strep in my sons body in light of him having been on antibiotics for almost three years now. Yet his titers are still double what is considered normal - but going in the right direction. We will re-test probably in the summer. I am less concerned about the numbers at this point. I would wait on the testing - I am not sure it will tell you anything - as it would be normal for them to remain elevated for a while - plus I am sure your child would happy to have one less needle. Good Luck - I hope the azith continues to work for you - is your doctor ok with the continuing on a prophylactic dose?

When one of my younger kids was on antibiotics for an infection, I tried a kids probiotic and it just clumped in his bottle - and he would not drink it. I then tried opening a capsule - adult one - that my 6 year old (at the time) was taking, and sprinkled a little into the little one's bottle and it just dissolved and he drank it no problem. I have tried the chewy ones once and my older son loved them - but we stick with the adult capsules that he swallows. Good Luck.

Thanks everyone, I have just ordered it. Will keep you posted.