Fixit

does anyone have any thoughts..... i just read somewhere, it might have been here...that someone's doc doesn't like pred and does hydro instead is it safer... less side effects long or short term.... or is that not enough for a pan/pit kid.... we have been trending better....there is this little bit i can't kick...but then there are these cluster of days that are bad enought to make me do a big gun.... maybe because we are going on 2 years with this episode and ds will turn 11 just before 2 year mark.... ah...but in hind site....november wasn't bad last year either..going into the colder months i wanted to get this question out there...got to run

I have also read that i probably, takes 18-24 months of abx to truly clear lyme.....just what i read, no experience i have read about the same for myco infections...probably more true in our type kids, with some type of weakened immune system... and the more i hear from parents the more quick fixes are less likely..though not impossible

i handled ds tics the same..told him.not a big deal, everyone is different...so i too was in a pickle... i would tell her..if she has the ability to hold them..not too...to let her energy go, just like at home...this doc undertands them and just wants to check us out...and see how much energy she has. you can ask dr l to talk privately at first...i did...it can be alot for them to have to think about as you are sitting there talking about them...it can be a long visit.....on the other hand if she can hold them...and wont show doc...maybe talking about them in front of her will force them out a little....but doc l is pretty good about seeing subtle ones and realize there may be some control going on Don't be scared..but easier said than done i realize....

do you know what station and time... maybe can get on utube?

oh ..didn't even thnk of that.....we've been through so much , i can't remember anymore ds was told at 5 no more pen based abx...so we didn't.. then this year..we tried aug xr as per doc t...about 9 days in joint pain blah blah... so we stopped biaxin, aug...then we to see scott smith in fl ... he wanted to retry aug..and i was scared as per trying 4 years after being told no more.... but scott said..since reaction wasn't immediate..i think his system is getting wiped out entirealy... lets do aug with diflucan....and sure enough we can do aug but he has to be on difluc..the yeast was getting in hie muscles and joints..... like i said before....my ds has gut issuses and any sligth move i make i have to be very careful.. i don't think i will ever say that x isn't causing y......because that is what people have told us for years.... so maybe for you child that is the case

Thanks NGU!!! This has been a pretty good week of posts.... lets keep it going!!!

just throwing this out there....maybe your brother has pandas/pitands, it doesn't necessarily go away as you enter adulthood.

how long on azith.... for ds as per other post...i think my ds gut is so messed up..i am litterally standing on top of a needle point... it could be herx and/or clostridia....make sure no red dye.... doesn't mean i won't revisit azith again.....

Hi Stephanie, I have searched around and cannot find any references to clostridia causing tics. Do you have any info. on that which you could share? It seems to me that any abx could aggravate clostridia -- right? We are trying to decide whether we switch from azithro--to something else, and if there really could be any connection between the Azithro. and tics? Thanks-- its my son....clostridia makes him worse and gives him screeches....clear clostridia and screeches remit..still other vocals and almost no motors......did this about 4 times

basicly start with culturell for instance(about 10 billion units)..i would at night before bed so it has time to work... after 3-4 days try 2....then maybe go up to 4...over time.... some people do trillions...we haven't gotten there yet...and my ds is 78 lbs some do it 2x a day..but it is hard for us to all that scheduled in day.... i would suggest to start...also stay away from anything with a strep strain in it...some do ok some don't...but start off w/o and maybe try those later..ie stay away from most yogurts and read labels on probiotics...

Thanks for updating....it is nice to get all of these at one time... i am sooo glad your ds is doing better and it sounds like you are too... THis is so tiring....and it was good you took a break from here...but i am so glad you came back to update us..

just want to ditto what all have said...and make sure you caught the part about...if the neuro doesn't know about, believe in, or understand pandas..(as it sounds to me like that is the case) you will spend way too much time going down the wrong path....i suggest you see a panda experienced doc...as in i have a panda friendly pediatricain but is not able to really treat the condition,..gets it, believes it ...but doesn't have a grasp on the ins and outs and resistant to long term abx...which may be needed ,,i see other docs for that

MOM...ssssooooo happy he is recovering so well!!!! Thank you for being persistant in making sure other kids might have the same opportunity to heal and recover... And while i'm at it...thanks to all here, especially those in the health community..for spreading the word...and not just being hushed by your peers, because it is not a popular diagnosis!!!!!!!!!!

yay....hope this is the last part for you ds.... thanks for posting...and let us know in the coming weeks if anything peeks in.. but if it does...i think now that they are out..and things were mild..you might just be able to bop it on the head with some more abx of some sort..or tumeric or something and just be done!!!!!!!!

things that make you HMMMMMM indeed!!!

Thanks for posting...i'm glad things are on the up trend and give him a squeeze from the board... please continue to update!!!

we have not done ivig.... but as a mom of a son with tics...i know how heart wrenching it is, to watch and to see that they have no control over their physical body.... i want to hug you both... maybe..not that he has don ivig ..he may have more relief with a steroid than in past...i would talk it over with the doctor....you can try ibuprofren every 3 hours for a couple days... try the epspon salt baths...they didn't do anything for my ds...but i hear alot of good stuff...and we may try in future as things and body changes....(it contains magnesium)..so a good detox, good for the muscles...so might give some relief and just feel good....at least a 20 minute soak going to church in a minute...will pray for your ds and all our pan/pit kids

are you talking alopecia(falling out) or trichatela...(pulling hair out) ds pulled/s his hair..he said it felt like something was under there, crawling or biting... then then next go round of it...he said if he didn't pull it out..it felt like it was just going to fall out??? ps...cant open link

one more thing...as i've been pondering,researching....probiotics are really becoming mainstream...and i recently posted a couple of things about gut flora and fighting seasonal flu and allergies.... so it wouldn't hurt to start probiotics now...get a running start.... if you think you have yeast, some are considered better than others.. if you have clostridia, sach, bifidum or maybe just start with a broad spectrum.... or just grab some cultruelle and take that at night.... i started all of us on probis...not just the pan/pit people in my house....

It's good to be bored..... I hope you get bored more often...it brings out the creativity!!!

this kinda explaines it...and puts a little twist i never thought of.... maybe some are more sensitive to the yeast itself, as in allergic...so a little or alot doesn't matter if you react to it...where if someone isn't "allergic" it doesn't effect them.... the only thing i can say in support of this test is...iv'e been doing it for years with our family.... and it is always the SAME...but i feel the condition hasn't changed for any of us yet.... DH...disgusting, leggy, cloudy.... me...normal...(i keep telling you guys i'm normal ) ds...a little cloudy, a little leggy ds7(non-p) normal.... ds3 haven't checked yet....next go round...i think he'll enjoy it we've done this test at least once a year or more over the course of yearsish.... i do think my dh an ds have a problem with this as they are the ones who have been on abx more times than to count dh is middle ageish...x 3x a year...is alot of abx

Thank you!!!Thank you!!!!!

not sure how long or what your protocol is.... but my ds would completely heal in 4-5 weeks from start of a traditional start of abx.... UNTIL...this last onset 1 1/2 years ago...i don't know if it was too many exaasperations..or the fact that it was myco p this time...or that he was 9 vs younger....

i don't have answer on doseing... in the mean time, can you get shot moved to monday mornings???...so your bad days would be the weekends

article Cnn... talks about taking probiotics to help immune system.... maybe things are coming round to the whole body aspect ignore...getting vacinee part http://www.cnn.com/2010/HEALTH/11/03/health.avoid.cold.flu/index.html?hpt=Sbin