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We bought DS's for our other two kids over the holidays - we have stayed away from these kinds of games in the past but feel my oldest son is now able to understand while they are not good for him his brothers are ok with them - and it is something that they play during the long hours we are at the ice rink for his games. My PANDAS son has been ok with playstation on an LCD screen - we got that a year ago - over the holidays he was sneaking some games on the DS - and watching the other's play and he started doing a head nodding tic - the other day he told me he realizes the DS does cause him to tic - in the past if he used a gameboy within about 5 minutes he would have eye tics. He so desperately wants his own DS but realizes the negative impact they have on him. Ronna's PANDAS son who has a DS does not have the same issues with photosensitivity. I wish my son was ok with them even for just limited time but he is clearly not ok with them yet - we do see his photosensitivity continue to improve - so with hope one day he will be ok with these kinds of triggers.

No - it was not that fevers were a problem - more that over the last few years he NEVER had normal signs of illness - just an increase in tics - so it was so nice to see him get sick where he actually felt sick - and wanted to rest in bed. We would keep him home when tics increased as we felt it was his body's way of reacting so he had to rest - even though he felt fine. Fortunately school has not really been a problem - we have had good teachers - we have a specialized program only in that they reduce flourescent lighting where he is sitting, they purchased an LCD tv for his classroom to use, and that when he has an increase in tics - he also becomes more forgetful and not able to follow direction as well- so we make sure the teacher is aware and double checks his homework agenda etc. His teacher has seen him doing well - so in October when he was more forgetful and not doing things as well - she understood it was due to the illness. He does well in school and sports and has lots of friends - so we have been lucky not to have those issues as well. His handwriting is still pretty terrible, if he is getting sick his letters get even worse - some backwards as well. I am sure even without PANDAS he would probably not have the neatest handwriting. The ped did diagnose him with PANDAS which was also then diagnosed by the ID clinic and neurologist. At the beginning we only told close family and friends - with others I usually just say he has an autoimmune disorder - if they ask more I say it is like rheumatic fever, but instead of the body attacking the heart it is attacking his brain. The photosensitivity has been a bigger issue as at playdates I have to ask what kind of tv they have if they are going to watch anything and also give the no gameboy rule. I usually just explain that it's due to photosensitivity. His tics are pretty mild these days - in October he did have a vocal tic which was difficult - the l-carnitine cleared it right up - another little miracle. We also find l-taurine works wonders if any eye stuff starts. In the early years I did tons of research - and really went in asking to try things - the doctor had heard of PANDAS and had another possible pandas kids but he also had lots of other issues - fortunately the doctor was willing to hear me out - at the beginning I also printed posts off here - so much is anecdotal - but I wanted to try anything and everything to help make him better. We have come a long way over the years - thanks to this site.

I will try and answer all the questions....let me know if I have missed something. My son is 9 1/2. He was diagnosed with PANDAS at 6 with a sudden and severe onset of complex vocal and motor tics - along with emotional lability, ADHD type stuff and overall change in personality. We were on amoxycillin for the first few years - after trying a few other antibiotics - Biaxin was one of them. We stayed on amox for about 2 years then went off it as a trial since he seemed to be doing better - it was a disaster - tics emerged within days and we went back on amox and it no longer worked - we then tried MANY antibiotics over the course of that summer, combinations of antibiotics etc - nothing worked. We then tried azith - the last one my doctor would agree to trying -and it was like a miracle - tics were gone within days - we stayed on a full course for almost 2 weeks since he was starting school - we then went on every 5th day. We did have issues with yeast - shown in the OAT test - I had not given probitoics in the beginning - so after about 6-7 months on full dose Biaxin I put him on probiotics. Interestingly, over the last few months he has not been 100% after strep went through our house. Over the holidays we ran out of probiotics and he seemed to improve not on them so we have not started back - Ronna mentioned that her son also did not do great on probiotics and wondered if it could have anything to do with the strep strains???? Anyway - we did start giving him yogart - which he had not had in years as we went dairy free when he was bout 6 1/2. Our ped. prescribed the azith and the Infectious Disease doctor gave the go ahead for long term use. We used to split the 500mg and give one pill in the morning and one at night - now we just give both at the same time. We determine the exposure to illness by his increase in tics - when others in the family have the stomach flu he would get tics Our prescription for azith is every 5th day or as needed - so I am the judge as to when we increase the dose to a full dose. We find it usually happens once every 2-3 months. We haven't given a full dose since the end of October - but that month we did a couple runs. We have done titer testing - his remained elevated for years - it was slowly coming down - after a couple years he was down to 700 - we usually test twice a year - the last time he was under 300. We do throat swabs at times but they never come back positive now - being on the antibiotics skews the results. Ultimately I have made decisions to up the antibiotics when I feel it is needed - we always see an improvement even with the viral illnesses - again, azith is also an immuno modulator so I think that is why we see the improvement - I am not sure what immuno modulating effects omniseph has. I actually tried to get omniseph when we had the strep as I was feeling the azith was no longer working like it did - but it is not available in Canada. Fortunately he seems to be better again on azith - and he had the normal signs of an illness over the holidays with very few tics - his first fever in years. Hope that helps.

We had started once every 7 days (500mg) - but changed to every 5 as we saw increases of tics - which stopped when we went to every 5th day (500mg) - others have found the same. I think the immuno modulating effect comes into play and explains the decrease in tics when it is every 5th day instead of every 7th day. A full dose is 500mg on day one and then 4 days at 250mgs. We do a full run if tics increase due to exposure to illness, usually it helps things settle down by day 3 on the full round. When we first started on azith we did a full run first before going to the proph. dose.

The way you describe the water glass is similar to Doris Rapp and her bucket theory which I always go back to - if the bucket gets too full of offending things - be it food or environmental it will overflow. She also takes about infection being like a hole in the side of the bucket - so things spill out immediately even if the bucket is not too full. We see this as the case with out PANDAS son.

I found potato milk once. Strange but true. I mixed it with chocolate sauce and the kids drank it.

We use Becel for heart margarine - it was the only one that had no milk products that can be found at our local grocery store - it does say not to use it for baking - when we bake with it we usually use half that and half canola oil. We have also on occasion come across goats butter.

There is no casein in goat's milk. There is lactose in goats milk though. My son can tolerate some gluten - when he is sick we get strict with the diet - but when he is tic free he can tolerate some gluten - we now also allow diary for special occasions - pizza party's etc.

Lots of kids seem to do better off casein. For some they can replace it with soy - although 30% with casein allergies also have soy allergies. Other alternatives are goats milk (which I cook with when needed) and almond milk - which the kids drink as a replacement to cows milk. We have also tried potato milk - who knew? - amazing what you find when you are looking. We use goats cheese mozarella for making pizza which the kids like.

He has been on antibiotics for 3 1/2 years.

Our ID doctor suggested staying on until 18 - the same protocol that was used for rheumatic fever. We have no plans of taking him off as a trial - as the one and only time we did that it was a disaster.

Hi everyone, I just wanted to share this - my PANDAS son was exposed to strep in October and tics increased (understatement!) - but were really only vocal - but enough that he was off school as they were loud and disruptive. Like a loud hmm deep in his chest. They were at times every second. I was really having a hard time with it - as he had been doing so well - I had a great fear that the azith was just no longer working - we had gone on 3 rounds of full doses and each time things got a bit better then increased when we went on the lower dose. I had started to look into other meds - as I felt he could not live like this - we got very strict with diet as well. I asked Chemar for advise and she suggested the l-carnitine for vocal tics - which I had read about a few times before but never tried (we do use l-taurine when eye tics emerge and it works really well) Anyway - I said a prayer and gave him the l-carnitine hoping for a miracle - well it was just that. By the next day things were much quieter (literally overnight) - there were still tics but way softer and much less frequent. Fast forward a few days and tics are pretty much non existent - I hear a few throat sounds in the morning, and going to bed - but nothing anyone would notice as anything other than a normal thing a kid would do - unlike a few weeks ago when people would turn if they heard him - he would have flurries of loud noises. I just wanted to share this - as maybe it could help someone at sometime. Thanks Cheri as always for all you do to help guide us (and support us) all through this. I am always so grateful for this site and all those who contribute with both their questions and their answers and suggestions.

My Pandas son never feels sick - and does not show the normal symptoms of illness - my other kids will have fevers/headaches/need to rest/ etc- he feels fine- just has increased tics. It makes it hard to have him rest as he does not feel a need to rest.

lighting can be a trigger - supermarkets usually have florescent lighting - same as doctors offices.

PANDAS is an auto immune disorder triggered by strep. Pretty much every child has strep at some point - and very few kids get PANDAS as a result. You have to be genetically predisposed - Running in families is the genetic factor - not one catching PANDAS from another.

When I did this test a couple of years ago - I was advised to STOP supplements for a week ( I think it was only a week). There was someone called FJ on Braintalk who was the expert on this - braintalk crashed and her posts may be gone too - I have not been to the site since the crash.

I think that is the regular way of going - and what my ID suggested too - we were on amox. for a couple of years -and then it stopped working - I think you are going in the right direction - I would start on it and be sooo glad that he is willing to look at other antibiotics if you are not having success. If amox was still working I would have stayed on that. My ped knew nothing about pyroloria either - he did look it up after.

Hi Michele, I have not been past begging for antibiotics over the years (holding back tears)- do whatever you can is my philosophy. I have asked doctors before what they would do if it was their child - what if something may work - and is not harmful to try - would they try it? Sometimes when you put it back to them in personal terms - they think about it differently. I also have said to doctors before - I know you see kids much worse off etc - but this is my kid and my reality etc. and I will do anything I can for him now.

http://intramural.nimh.nih.gov/pdn/pub-9.pdf Here is the link - hope it works

If you go on the NIMH site - there is a published section - and you click on there and the articles are there. I don't know how to link - I usually type in NIMH PANDAS and google it. It does not say azith is better - but it does say it worked - and amox was NO LONGER working at all for us.

We got azith after everything else was not working. I was a last ditch effort - after reading the article. Now the doctors are ok with it as it is working for him at this time. I am not sure they would have agreed had other things been working. This article is right over my head. I don't know how you understand any of this stuff Kim! (and others) I did do some research early on when we were starting azith - on CF patients using is due to immuno modulating effects - I think in studies they were taking it daily. I seem to recall the ID doctor or allergist saying they were even starting to research the use of it prophylactically for asthma patients. (not 100% sure as it was a while ago).

Hi Michele - sorry things are not going as well as you had hoped. The usual prescription for azith is doing a full run initially (500mg first day then 250 mg for 4 days) My son takes the pills - 250mg each. When we first started we did a full 12 days or so as it was the beginning of the school year. Then it is usually 500mg every 7th day (as per the article) - but we have been doing it every 5th day and I believe Ronna does the same - we found waiting the 7 days was too long. At times of flare ups (like now) we increase to a full 5 day run. Even if it is a viral illness we find tics die down - we are assuming due to the immuno modulating effects of the azith. We are going into day 4 today - things are improving but he will still be home from school. With azith we have usually seen an improvement almost immediately - by the next day things are a bit better - but by day 3 there are quite a bit better. Azith has a long half life so keeps working for the 5 days.

All the info I have read on PANDAS indicates it is a pediatric illness and will be outgrown! The neuro we saw a last week talked about the worst time being between 9-11 for PANDAS patients. All the doctors I have seen have indicated they believe he will outgrow it and eventually his immune system will manage himself - the same as rheumatic fever. They all seem to think we will be on antibiotics until he is well into his teens. I have read many posts over the years - and when people do come back to post they are saying their kids are so much better - that is Ronna's experience - with her now 11 year old - and also mine with my now 9 year old. I would take it slow with the vitamins - add one at a time - then wait a few days - and see what your child can manage - I know at times in the past I was giving so many vitamins and my son would periodically say he wanted to stop taking them so I let him - we would find tics coming back after a week or so and he would ask to start taking them again. Good Luck!

I have chickened out on using Unda drops for my son - but when I have used them for myself I always start really slow - if it says five drops 3 times a day I start with 1 drop 2 times a day - and slowly build up. With hope you won't see a reaction - and if you did you can know to slow down or stop.

Hi Michele, The vocal tic is like a throat clearing grunt - it seems to come in flurries - like every second for 20 seconds - then slows down - then there might be 10 minutes with nothing. It would be disruptive in the classroom - although he tells me he does not have habits at school. We were finding at times his coming out of school and having a flurry - but the teacher said she saw none - the neuro told us last week that he needs to let them out - so does it when he feels safe etc - so we should not bother him about it or ask him to quiet down. (easy for her to say) The doctor called and Omniseph is not available in Canada - we are waiting still for the throat swabs - should know more tomorrow, My son is on azith - every 5 days and has been for a year - before that he was on amox for 2 years. I will probably keep him off school tomorrow - he did lay low today - which is not like him. Emma - I learned the hard way about vitamins - like Ronna said - do one at a time, then wait a few days - or you just don't know what is working or not working. It is all so complicated and what works for one does not work for all.