Azith prophylatic

[P_Mom]

Hi!

Just a question for those who have children on Azith prophylatically. Do you give your kids a 500 mg dose? The article from NIMH says to give to kids it once a week, twice in a day, but, I have heard people give it once every 5 days, twice in a day. What do you all do? How is the "full dose" course given?

 

THANKS!!

 

Kelly

[michele]

Kelly,

Did Dr. Berger prescribe Azith?

Michele

Hi!

Just a question for those who have children on Azith prophylatically. Do you give your kids a 500 mg dose? The article from NIMH says to give to kids it once a week, twice in a day, but, I have heard people give it once every 5 days, twice in a day. What do you all do? How is the "full dose" course given?

 

THANKS!!

 

Kelly

[ad_ccl]

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.

[P_Mom]

Thanks. I am asking because I want an idea of what to do if I see an increase of symptoms. Right now we are on Pen VK and so far so good, I just want to know about Azith "just in case." When you give 500mg, is it in two separate doses? Do you give a full round even with a viral illness, and does it still help??

Thanks!

Kelly

[P_Mom]

ad ccl,

Sorry, forgot to ask. How old is your son? Have you ever had yeast issues and do you do probiotics?

[michele]

What other antibiotics did you try before azith? What kind of Dr. prescribed azith? Did they have a background on PANDAS syndrome? How do you determine the exposure to illness? What kind of behaviors surface? Do you have a routine you follow when you think he was exposed to strep? virals? Sorry for all the questions but I feel so alone on the treatment of this. I wonder if you see bad behaviors and tics resurface is that a clue to give the higher dose or do you go for titer testing? Do you get throat swabs? I just want to get a grip on this. On 250 mg of omniseph once a day we have had a set back. I don't know if he was exposed, is getting sick or what is going on. An increase in ADD and emotional behaviors and anger. I have also seen more eye blinking. I am wondering if I should just try to up the omniseph to twice a day for a week. I have been to so many Dr's and nobody seems to have any experience except for Dr. Murphy. I probably should send her an email. She is the one who said to do the 250 mg of omniseph. Usually my son gets urination frequency with an episode but we haven't seen that yet. If you don't mind can you give some history of your experience with PANDAS.

Michele

 

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.

[ad_ccl]

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.

[michele]

Thanks for your detailed response. When you mentioned fevers, were they a problem for him at one time? Our initial tics came on with high fevers 104/105 degrees and strep. My son would always get high fevers which I associated with the tics for along time.It took me time to see the tics were brought on by strep/virals and not the fevers. I thought the high fevers initially reached a threshold more then his body could manage which damaged the neurological functioning. Now he rarely gets sick. Like yours he is neg to strep while on antibiotics but gets weird symptoms at the time of exposure. If you don't mind me asking how have you managed to deal with this at school? Does he have ADD issues in the classroom? Does he have a specialized plan? What about motor delays? We are in OT therapy now and seem to be getting better at strength and multiple tasks. Do you explain this disorder to family and friends? Did your ped diagnose him with PANDAS? Had he heard of it or treated it before? You were very fortunate to find an informed Dr. We have been through many and none seem to up on the diagnosis or willing to learn about it. In fact many seem to question its existance. Thanks again. I am glad things are going well!

 

Michele

 

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.

[ad_ccl]

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.

[michele]

I just wish the Dr's read up on this like we do. I am so glad you explained how he gets when exposed and how you just up the meds for a week. My son has been having issues this past week and duh I just figured he was on the Omniseph and he wouldn't be getting sick. So I will up the omniseph to 2 tsp once a day instead of one tsp. and see if it makes a difference. Since the teacher noticed it this time when before he said he had never seen any of the behaviors I described at school. The flashing lights at the High School Musical on Ice really increased his blinking too. Andrew makes his letters and numbers backwards sometimes too. His writing gets messy too and he has trouble crossing midlines. I wish there were more books that had case studies on this disorder. It is tricky to explain to people. I explain just like you with the autoimmune and like rheumatic fever but attacking the brain. Are the DS Nintendo screens okay? This site is great. I am so glad for those like you, who take the time to post.

 

Michele

 

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.

[ad_ccl]

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.

[kkver]

when i read these posts it just hit me in my gut as i recalled 2006 december i bought xbox on Xmas and PSP on his birthday in Feb and from march last year he had onset of Tics with PANADAS and i had to keep both of them away ( 5 unopened games) even on LCD screen for Xbox. All i figured out his tics come from excitement in games , going to new stores, new places , new freinds , seeing fast cars on road , new eating places. There's mall near my place where he has been going for last 4 yrs and i never see a tic there in any shop or food place.

 

Michele

Just wanted to let you know my son used to have very upset stomach with little increase in doseage of Omniseph after that we used azith.

[michele]

My kids got the Wii for Xmas. This could probably cause the increase inblinking. I know we have a flat screen but I don't think it is LCD. Andrew is so good at the boxing. It must be because he is so hyper he just punches so fast! He does love his DS and plays it before he falls asleep . It seems to help keep him in bed until he gives in to sleep. Could be causing blinking too.

 

Thanks for the heads up on the omniseph. I will push the primodophilus. If I wanted to increase the doseage would it be okay to go from 1 tsp to 2 tsp once a day? It is 250 mg strength. I guess I never thought about what to do in a flare up once I started giving him the omniseph everyday. I was so hoping that would be the fix. How dumb of me. I had better have the azith available in case of the omniseph is not working anymore. This is like a vicious cycle. Don't you feel like you should have become a Dr.? The last Dr. said he would not be opposed to prescribing azith or omniseph. I am waiting on the blood work he ran two weeks ago. I am trying to stay positive and not get too worried. At least he is not peeing all the time right now and doesn't seem too obsessive.

 

 

Michele

 

 

when i read these posts it just hit me in my gut as i recalled 2006 december i bought xbox on Xmas and PSP on his birthday in Feb and from march last year he had onset of Tics with PANADAS and i had to keep both of them away ( 5 unopened games) even on LCD screen for Xbox. All i figured out his tics come from excitement in games , going to new stores, new places , new freinds , seeing fast cars on road , new eating places. There's mall near my place where he has been going for last 4 yrs and i never see a tic there in any shop or food place.

 

Michele

Just wanted to let you know my son used to have very upset stomach with little increase in doseage of Omniseph after that we used azith.

[P_Mom]

Hi!

Just to let you all know if you hadn't seen the post about it yet. There are warnings on video games, for sure Xbox games, and I also saw it on a PS2 game I WAS going to buy for my son. Anyway, it states that video games can cause "seizure" like disorders, even in people where no previous condition exists. Check for it on the back of your games, or even their web sites. The older games may not have it posted yet, but, I believe it is mandatory from now on.

 

Aslo, kkver, what dose and how often do you give the Azith? Any yeast problems or other problems with it? Do you up the dose with illness (even viral) and does it work?

 

ThANKS!

Kelly

[kkver]

Hi!

Just to let you all know if you hadn't seen the post about it yet. There are warnings on video games, for sure Xbox games, and I also saw it on a PS2 game I WAS going to buy for my son. Anyway, it states that video games can cause "seizure" like disorders, even in people where no previous condition exists. Check for it on the back of your games, or even their web sites. The older games may not have it posted yet, but, I believe it is mandatory from now on.

 

Aslo, kkver, what dose and how often do you give the Azith? Any yeast problems or other problems with it? Do you up the dose with illness (even viral) and does it work?

 

ThANKS!

Kelly

 

 

Kelly

I don't give azith all the time. He had gone through strep 2 times since last year and tics came. I gave zithromax for 10 days after last strep and stopped 1st day 400mg then 200 mg for next 9 days. I saw shoulder shruging which is in the process of tapering off. He has wheezing issues so it's get lil complicated if i have to give breathing corti steriods. Weather here in So cal had been chaging so rapidly he was hit with flu+wheezing so i am using them now and i saw some tics which were in the process of going away after last strep infection.

Chemar

Some thing i noticed today that the albutrol which i use to control his wheezing when needed has sulphate ( albutreol sulphate ) which may be the reason i am seeing some Tics just as seen in epsom salt bath use.