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you said she was clearing her throat when she said her throat was sore - have you had a strep test done?

Check the NIMH website - type in PANDAS and NIMH and you should get there - the article on azith is the one we took to the doctor.

For several years my PANDAS son still did not exhibit normal symptoms of illness - his tics would increase when his siblings were sick - they would have the stomach flu and he would have tics. In recent time he is now starting to get sick like a normal kid - actually feel sick, and want to rest in bed. Symptoms do increase and then decrease as he gets better. A while ago he came down with a stomach flu - the tics started up the night before - they lasted for a few days - we used the l-carnitine to help the vocal tic. I would let things ride out - it takes time to get the immune system back in order - if she was more sick her body will need some more time to get back to base level for her. The other thing to keep in mind - if you are still on an increase antibiotic - that yeast can become a problem too - that may keep tics hanging around. If probiotics work well for you make sure she is taking some extra ones.

I had totally forgotten but my son had usual visual things going on too - early on in the PANDAS journey. We took him to the eye doctor who found nothing wrong - my son would see white spots floating around - and at night he would talk about seeing white spots as well. I can't remember all of the details now - I may have written about them on some early posts here.

That is a good question...I believe it was just short term use - we were not discussing anything long term, just that I had read it had helped other PANDAS patients - I had not been specific as I did not know much either way - I was just grasping at straws as the antibiotics had stopped working - my doctor consulted with the Children's Hospital and the feedback was they would not agree to it.

I talked about steroids with my ped a couple of years ago when my son was not getting better on a whole variety of antibiotics (azith eventually worked wonders) he talked to our children's hospital and they would not agree to it. Said there were too many risks. Not sure what all those risks were though.

good luck!

I think the first day we gave a 1/2 of the 500mg pill (we had thought it was a 250 mg pill). We have given the full 500mg dose as well. I think as Chemar has said many times, our kids all react differently and what works for some does not work for all. WIth hope if you increase it you may see an improvement. IF you notice an increase then I would not increase it -and stay and the smaller level for a few days. Early on when my son was sick - the evenings were always worst for tics. I think by the end of the day they are just tired so their immune system is more strained. Excitement could also be a trigger for my son at times. Sending some good vibes your way - with hope you will soon see the same success we have. It was not overnight for us - we have been at this for many years - but well worth the time and effort.

We don't give a vitamin C specifically - I am sure there is some in his multi. We also notice an improvement immediately - literally overnight. The sound gets softer and more distance between the tics - each day there is more improvement. But is was like a miracle that first day.

I always think starting low in best - so if you dump out 3/4 of the pill contents and then give him that for a day or so, then increase gradually. We went up to 500mg - but our intention had been to go up to 250 - the bottle we bought was mislabeled. Our son is 9 and about 70lbs. Since he did so well at the 500 we kept him on that - then once he stabalized we went down to having it once every couple days, then every 3 days etc then once a week. Then stopped all together. He started again just before getting a stomach flu with a vocal sound so we started it up again - and the tic is now gone. The new bottle we bought was 250 mg and he did fine at that level. Good Luck - we had such great results with this.

Hi Kelly, We had always just used probiotics - at one point we increased the number of probiotics - so were giving maybe 6-8 a day. We saw some improvement and then reduced to 2-4 a day. Then over Christmas we ran out of them - and he stabalized even more - we decided not to re-introduce the probiotics - Ronna had said her PANDAS son did not do great on probiotics. I think as time has changed our sons needs have as well - Yeast was probably a big issue early on as he was on a full dose of antibiotics for about 6 months with no probiotics. We did an OAT test which showed yeast to be a problem - we have never re-tested. Now we give him bentonite - a yeast buster clay that we got at our supplement store - he has it about once a week when we remember. I think as long as you do the probiotics as far away from the antibiotics you are ok - I had always understood it needed to be 2 hours apart - but I would try to have it at least 3 hours apart. Right now he is doing well so we don't want to rock the boat. Just to add..we have become much more lax with food - I still limit wheat - only in that when I bake I do it gluten free - but he does eat regular bread/buns etc.

are you getting the kids chewable? if so - let me know how it tastes. My younger two are terrible eaters and I can't find a good multi that they will take - so against my better judgement they take Flinstones. I have tried many "great tasting" one's and they just spit them out. Fortunately my PANDAS son swallows pills - so it is less of an issue for him.

Hi Em. The brand I use is Goodn'Natural - and I was giving 500mg a day ( my label had actually been put on incorrectly - and I thought I had bought a 250mg bottle. The reduction in the vocal tic was dramatic and it eventually totally 100% went away. At the time he had a loud vocal squeak that was almost by the second at the time and very disruptive - he had been exposed to strep - once we started the supplement it did not take too long (there was actually an improvement over night - tics seemed softer and less frequent) - and each day it was less obvious. I do believe the l-carnitine was what helped as the reduction was so dramatic right after starting the supplement. As always there could have been other variables - one can never be 100% sure. We eventually went down to a 250 mg then reduced to every other day - then maybe once a week - the vocal tic went away for several months - just in the last week a slight vocal tic has started to come back - he was sick last week with a stomach flu and chills - and the vocal sound started the day before - we then started back up the l-carnitine and the sounds are very limited at this time.

I have a PANDAS child - recently after an exposure to strep he had a vocal tic that was constant - we tried l-carnitine (thanks to Chemar) and it was amazing.

Thanks as always Carole.

yes - paint fumes can trigger tics

get her throat swabbed asap. I am not sure your history and if PANDAS is suspected - but lack of empathy can be a big one with PANDAS - and changes in personality. My son did things WAY out of character when he first got sick. And did comment later that his brain felt twisted around. He knew what he was saying/doing was not right but could not help it.

In October we had done three rounds of full dose antibiotics - which would help a little but not tons for the vocal tic he had - it was loud and intrusive. I was pretty desperate as I felt that the antibiotics were just no longer working - much like how amox stopped working for us a few years ago - and I knew there really were not any other options - it was a hard time. I asked Chemar for advise and as always she was fabulous - I knew I had read about something for vocal tics. She suggested L-Carnitine. My package says L-Carnitine Fumarate. My plan was to give 250mg but the bottle I bought was mislabeled and they were actually 500mg capsules. The improvement was literally overnight - the tic was much milder the next morning and within a few days was pretty much gone. I am convinced it was the l-carnitine and not the antibiotic - I have a feeling at that time he may not have even been on the full dose of antibiotic, I had tried a few rounds hoping that would work -then had to look at alternatives. My son is about 70lbs and 9. We gave him the l-c for a couple of months - I think I was scared to stop. I still give him 250mg every once and a while. He has absolutely no vocal tics now - and hasn't for a few months - and no visible tics other than a very periodic nose squish that no one would notice. Most importantly he is so happy, no emotional lability and he is focusing well in school.

If tics are not noticeable to others and not a bother to him I would let it ride. Remember there are risks to ongoing antibiotics too - for us there is no question the benefits outweigh the risks - but it sounds like your child is pretty much tic free - if I am reading correctly. Faith - I posted a while back about our amazing success with L-Carnitine for vocal tics (thanks Chemar). After our exposure to strep my son had a terrible vocal tic - non stop and loud - it cleared up with L-Carnitine. It was a mini miracle!

Kelly, He did not test positive for strep - but his brother did. His symptoms increased tremendously. He has not tested positive for strep since the initial onset of symptoms 3 1/2 years ago- the doctor has told me that since he is already on antibiotics it can skew the results. He has been on antibiotics since the initial onset. First amoxycillin then we went off it as he was doing so well - and things went so downhill - we went back on amox and it no longer worked -he was not getting better - we then tried many different antibiotics none worked - azith was the final one the doctor was willing to try - it was a miracle -and we have been on it for almost 2 years. His strep titers have been tested every 6 months or so - They slowly came down over the years - from about 1500 to 600 then last summer we tested and they were around 300 - we have not tested since.

He is on azith every 5 days. Jaminsky - when my son was first diagnosed with PANDAS the antibiotics made everything go away - but within a few days being off the 10 day round the tics all came back - keep a journal of symptoms - as it is easy to end of forgetting the sequence - if tics do return (with hope they won't - I have heard that can be the case for some) then ask the doctor about prophylactic antibiotics. Good Luck.

Just stopping in quickly...PANDAS is different than Tourettes - the tics and more spiky/sawtoothed - they come on quickly - often overnight then it takes a while for them to settle down - a at least that is what I have read and what our experience is. I have found as time has gone on and my son is doing better and better - that the spikes are not at all as extreme as they once had been - and the time it takes to get better is much quicker. To give PANDAS moms lots of hope - our son is doing amazing - we had strep in our house in October and things got pretty bad - he missed a bit of school - but things got better (after a few full rounds of antibiotics) - and he has been doing really well since Christmas. Interestingly we ran out of probiotics and fish oil over the holidays and that was when he stabilized the most - we have not added them back in to his vitamins. When we first added probiotics and fish oil we did see improvements - so I think it just shows that the body does change and what worked in the past may not work now for some reason. He is happy and no noticeable tics.

in the early stages of our sons illness we talked to our local children's hospital about IVIG treatment - and they were absolutely opposed to it saying there were too many risks. Had my son continued to be as sick as he was at the beginning and not responded to antibiotics I would have pursued it in the states if needed - but was glad not to have had to. I was always glad to know there was another way to treat him if he did not get better - but was concerned about the risks that are involved. I have read over the years several stories where the IVIG was life changing for PANDAS kids - and they recovered very well.

we try to just let things ride out - rather than upping the antibiotics, but if things do not improve on their own or tics are at a level where they are a problem then we do a run of antibiotics - our son is on azithromycin which is an immuno modulating antibiotic - so I think that is why he improves on those antibiotics - even with a viral infection - usually within a day or so we see significant improvements - in the past we on average would have to do a run every 3 months - the last time we did a run was October - when we had strep in the house. Over the holidays we had the flu - he has a slight increase in tics, but we did not increase the antibiotics -and he got better on his own. I feel like we are starting to come out of this long tunnel with him (knock on wood). As he is getting older his symptoms are decreasing significantly. I certainly believe that this will pass....

I would wait until you have done the blood work before changing anything. Then there is no second guessing.