kkver

Hi I am trying to find out what is the frequency of pandas with your kids and how long they go through without any meds. Mine is having 3rd episode since last march and i have used zithromax in past for 10 days before and then tics go away with in 2 months. During the time zithromax is in the body they vanish but after that mild one comes back and totaly go away in 2 months max. Guess time for 3rd time for 10 day course but not sure so keeping my finger crossed.

My son came back from school today and had complained about stomach ache along with headache. this is his 3rd epsode of panda since last march. Wonder when thee will be cure.

My son complains about headache once a while but it doesn't last long.

She's 16 and still like a PANDA child that is little confusing. May be you wanna get her titer counts checked again and if everything seems normal you might want to go behaviour therapy route.

Rita Very important post of yours. We all will like to know how you son was diagnosed of PANDAS and was recommended for IVIG treatment. What is your location and which doctor recommended this treatment for your son. thanks

I forgot to add this is for PANDAS parents . I bought strep test kit few months back and it is really easy to use and pretty effective in finding out if someone had cold , sore throat or strep. As key to PANDAS is catching strep as early as possible. I use it in my family in case some gets sick. http://www.cliawaived.com/web/Strep_A_Test.htm

Nan New tooth act as a trigger to Tics. Like Chemar said i have seen that too with my kid. Riping out carpet is good idea i did that to whole house couple of years back for allergies and found it very useful. Regarding filters don't buy Ionic ones as buy the hepa or something like that. As of diet i have seen corn / sugar ( candies / lays chips ) as culprit .

this was before pandas and i think it was 5 to 7 days cople of times in 18 months time period with 30mg for 1st 3 days then bring it down to 20 for next 2 and then 10. But i used for only 3 days that too 20 mg only cause i knew what the side affects were as someone older in family uses it for severe asthma control.

I have used prednisone for my son couple of years back for asthma. The main function of this drug is it lowers your immune system so that it doesn't attack against the virus and infection. Like in asthma your air tubes get swollen when attach happens and airway gets smaller and when severity is bad you use it . But got plenty of side affects weight control is one of them. After my son's asthma got controlled by inhalers i never used it. As of PANADS after antibiotics if you see mild tics chances are very good they will go away . Clonodine and other Tics related meds should only be used when Tic are very bad and are obstructing day to day activities that too can be taken care by vitamins and other supplements. Over all there is no medical solution at this point other then wait and watch and let them grow out of it.

Dr Carol is one of the research doctors in SFO about PANDAS. Very hard to get into but if you can she is the one of the best on west cost. I spoke with her couple of times and when i told her about my son she said it matches with PANDAS. She does lot of research on it and keeps in touch with Dr Murphy in Fl. Second if your kid is getting too much infections try using Xylitol, Xlear Nasal Wash frequently. Xylitol is among bacteria’s natural enemies so can do prevention up to some extend. Use it once kids come back from school or playground , parties. http://www.xlear.com/xlear/

Bmom recurring strep reminds me my son had his tonsil and adnoids removed 2 years back as he was getting too much infection in them and they became large and caused sleep apnea.

Bmom Once zithromax goes out of system you might see some tics or some emotional episodes. I have only used it twice after strep but i use it for 10 days instead of 5 . I have seen some tics came back after 5 days which takes roughly 12 to 16 weeks to go way . I don't like continues use of antibiotics so have not gone on that path nor i like the other Tics controlling which have serious side affects. One thing i have seen any 5 day course of antibiotic doesn't wipe out the bug so i find it critical to use antibiotic for at least 10 days .

zithromax normally works best during PANDAS . There was a big article about it on NIMH about it's some property ( i think amino modulator ) . Last year there was a girl around 20 yrs old who has posted she went through numerous IVIG treatments in NY and was on antibiotics.

Sorry to hear about your kid. The key is find a doctor who is willing to listen to you and avoid the medicines meant for neuro disorders. If antibiotics makes it better then he should go on antibiotic though i don't like long term use of antibiotic but if you don't have choice then you will have to go on it. Try calling, emailing Dr Tanya Murphy at Shands in florida may be she can explain it to your doctor or if you can go there she's the best out there on PANDAS. http://www.shands.org/

Judy I am glad the doctor found PANDAS. Only thing is if it is if it is PANDAS why he was started both the medications. CLONIDINE is low blood pressure medication but is also used to control TS but have side effects. As chemar said you should keep a eye on it . If it was only antibiotic ( may be stronger then penn) then it makes more sense . Hope he feels better soon.

Michele I will keep him off the ablllify. there are couple of members on this forum who have posted very negative information about it. " airbucket and Deedee " http://www.latitudes.org/forums/index.php?...&hl=Abilify

Nan For how long ( long term ) have you given allergy meds ? Did the Tics start recently means after she's been on allergy meds ? I feel long term antihistamine & steroid use has something to contribute in to Tics.

OCD/anger control while outside home i think is right. I have seen my soon gets some times get angry on small things at my wife as soon as he enter the the car when she goes to pick him up from school. Second how did she behave while she was on antibiotic ? In PANDAS it is seen that O ASO and dnase titer counts are high or + ve strep and kids will display either ocd or tics or both. these are panadas guidelines but the best observation we have seen with posting on this board is use of antibiotics reduces or get rid of these conditions. Hope this helps.

Judy After reading your post it seems your grandson will need stronger antibiotic then penn. Next in line are azithromycin and omnicef . Some one here posted his/her kid gets better with only omnicef but most PANDAS cases gets ok with azithromycin. There are posts here where kids were on penn or amox which stopped working then azithromycin or omnicef work. Second you will have to find a doctor who understand the situation and is willing to work with you which it self is kind of project which i went through.

trubiano Don't feel bad there is so much you can control. We as parents will think best for our kids and there is no way we know before hand what kind of reaction a drug will cause. But one thing i learned is unless it is absolutely needed , don't use any medication. try to use some local honey for allergies through out summer it might build up some body immunity against local allergies.

judy It will depend on type of antibiotic how it reacts to the specific child. Some gives pretty good response with penicilln and some with zithormax , amoxicilian or omnicef. I have seen kids getting better by the end of 24 hours like 50% and by end of day 4 or 5 they will go between 97 to 100% but chances are you might see them back either full or in milder form after antibiotics. After reading posts here some kids needs to be kept on antibiotic for long periods ( 1 to 2 yrs + ) and some might get better with time.

Jasminky If the tics are mild and not a obstruction in daily activity just let it go and keep a watch on it. I think medication should be only used if required even if antibiotics. Try to use fish oil and vitamins ( multi + extra C ) and other natural food ( vegis and meats ) and ride them out. cheers

Jasminsky My kid Tics stop when on antibiotics which i have use for 10 days and then mild tics come back . Last time it took some 8 to 12 weeks to completely vanish. Right now he's getting better from the one he got from the strep during thanksgiving and are very mild and visible only when he visits any new place or meets someone new due to excitement. I don't keep him on continues antibiotics after initial 10day ( double the normal zithromax) course. Hope this helps.

This thing is kinda exploding now , more and more kids are getting it due to infections and doctors are not ready to accept it. If i was you i keep him on at least 10 to 15 days duration of antibiotics. But you are the best judge on this. I am glad he's getting better but i am getting little frustrated with doctors after seeing more and more posts like yours.

It's good you are trying to find alternative as antihistamines have been named to cause of Tics in some cases. I have read that and confirmed it with my kids asthma & allergy doc. Last year when he got tics 1st thing she stopped was Zyrtec and after that i never used it.