Fixit

i am so glad the combo is working...this thing is so confusing in which direction to go to as there is not one size fits all...or even something similar fits most can you explain..trouble with vocals....did they go away... and i guess you stayed the course with all the abx and do you have a percentage of improvement....are you close to 80%? thanks and thanks for sharing your story

this is just in response to someones question on remittance.... ds 11 used to remit in full with standard course of abx.(10 days)..no one would listen to me about pandas..but luckily there was a strep or other infection to treat and he would return to 100% the 15 or so times of episodes... till this one..which started 2 years ago april.... ds 8 has had many ear infections..i thought non pandas ...got strep 11/11/10 still no pandas..another illness hit 12/16 and on 12/21 he had his first tic...since then while on abx.he has gotten an ear infection, mono, and some other throat infection....he just went 100% week..98-99% last week.. ds 3 had first episode in july 2010..i thought it was from a vaccine a few weeks earlier...or maybe the final trigger...a couple weeks later docs found ear infection..he got better...i take in 2 weeks after that still infected..and then he remits....so that has been since august 2010 sometime... i found notes in ds11 notebook...ds3 had pink eye a month before tic started.... but he did have myco p a year earlier..which i think was ds11 final trigger.... so 2 at 100% and ds11 is not doing well since starting lymes treatment one month ago...we were not at 100% but a solid 80-85..maybe better..depending... why are the other 2 in remittance??? age???? quick action and panda accepting doctors..finally???? why is ds not remitted in almost 2 years???? age??? number of onsets???? no one would treat with abx till 10 months later??????? lymes????? ok..as i'm typing...spoke with grandmother of ds(dh's mom)..the side where this genetic pan/pit cr*&^ comes from.... she told me..that her parents who are still alive and in their 90's , and her sister and herself cannot take... biaxin, augmentin, any pencillian and perhaps a sulfer based abx... can someone throw me a bone!!!!!!???????? they know i have him on different abx?!?!?!...they know all the docs i see?? did not do biaxin recently..but did do aug and pen..i don't even have words..... a year ago..almost to the date...the sh)(** hit the fan within 48-72 hours of starting biaxin(so i knew not to do again) and a steriod(though 21 days later we had 4 days of 95% remission...so was not afraid of steroid (and the taper in july was more awesome 98% and lasted a while longer...no rebound, but stuff crept back in, not to worst point)

Does this have anything to do with it...i don't subscribe...might have to join http://www.ncbi.nlm.nih.gov/pubmed/20434537

what to do... doc b did not call back... everything is still a 7..... i scheduled allergy shots for turesday..was going to bet bicillan too.. but i need at least 24 hours for pharmacy to order...so that would have to be today and soon... we stopped protocal 12 days ago. started vanco 11 days ago..usuall by day 12 i would see a drastic betterment/remittance..still afraid that dose was only 125 daily...other times 125 tid... labs were still not back...hate to call to pay for another consult when labs will hopefully be in tuesday(I PRAY)...... (stopped samento friday..i am afraid i am letting lymes gain ground or build a resistance) do i call scott anyway and up dose...do i wait another day or 2 to see if it is definitley some gut issues...plus we'll be in nj to see him on thurs..as i need to have all my docs in pocket as i now have 3 pandasSOT children... do i call beals again, to ask about shot... or just skip it on our own ...till next week.. not trying to be nag...but his is not your typical muscle pain response and i feel like i need to understan more....and we are new into treatment and may need more handholding..each call was not more than 5 minutes??? we leave on wed to see some of our panda docs to stay on their list when we need help...wont be back till next monday, so tuesday would be the next earlist time to get bicilian)... when doc b saw my ds...(i think and i would have felt the same)..that he was in a good condtion(remarkabley really) to push a little..we have since talked to him once a week..but not last week...our phone consult is set for wednesday..(i'll just have arrived at my brothers in NJ to do consult from there... waiting for myself would not be an issue(there are several things i have not followed through on for me for over the last coulpe of years, that i need to get on.) this is my kid...this is a kid who has been through so much...this is a kid who was so much better 4 weeks ago.. trying to get 504..it's really effecting his school work, per several emials with the teacher... looked at that semi-loose tooth last night..called dentist today and getting it pulled as it is growing over the baby tooth..

sptcmom ..your box is full

and once you get to the wheel of bugs..you can scroll over it and it give some symptoms http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf and it has a step by step feel/layout

thanks phila..ok will give more alleve...no samento till sunday...maybe start back there at 3 drops bid.... thanks again..his b=day is monday...

i asked him if he feels sick..wont let hubby look at throat...he says its from the head nodding/shaking..pretty severe

Need some help... ds home from school..first words in car...mom they're an 8...what happens when it gets to 10....i said "i don't know son" his vocals are constant...litterally...screech, suck, cough, click..head nod, shake, stomp, suck, spit..kkkk, nod, shake, screech...cough, clear.... recent info.... we are up to 6 drops samento..i stayed at 3 for 2 days then stayed at 5 for 2 days... vanco 125 am clyndamicyin 75 mg bid detox after school..burbur or clay...thistle in am or pm.... triphala to move bowels.. yesterday exhauted after school..took 2 hour nap.. at bed gave 2.5 mg mel back to bed at 9pm he said a coule days ago he has a loose tooth..not very loose though... said neck hurts, i gave 2 ibuprofen.. hopeing doc calls back... should i back off of samento...i wont give tonight or tommorrow... thinking restart on sunday at 1 or 3 drops... his b-day party tomorrow..another shi%$$%^ one...just want him stable enough to enjoy.. today is day 9 off of protocal... day 8 vanco..though concerned still not high enough..and ususlly i didn't remission of vocals till day 12 or about 2 weeks. day 7 of samento.... was going to get next bicillian shot on tuesday...maybe should wait another week till more stable...waiting won't back track us right...just one more week...... i heard some times you have to back off or slow down a little..... i also heard the clindamycin is used sometimes to treat lymes any thoughts

jmho..chronic infection..what...idk

I am mom of ticcers...and never disclaiming anyones thoughts, experiences or information ds3 remmission ds8 remiission 2 days ago..then ramp yesterday..wt!..tells me as falling asleep, some kid threw up next to him on the bus today.. ds10 to be 11, was at a 2 on tic scale, recently ramped to 7 upon start of lymes treatment not trying to be curt..just so busy.... ds11 ish the one i always talk about...his ramp could be do to multiple abx and creation of herx, or from my past experience...after alot of abx..yeast/c.diff.. trying to get ds stable and once results come in will tell me which it is, what directon and how hard to go... this will not be popular...the cunningham test should only be used as tool, indicator and guide..like other tests are used to help diagnose lupus, ms etc... my ds 1st draw 105..(to me, still not normal range,so something going on, but would be classified ts) and i was disheartened, cancled appts with some respected docs...as i have eyes rolled at me for7 years prior..trying to convince someone of my ds having pandas, didn't want to post as I KNOW IN MY HEART AND ALL THE 15 ONSET WITH STREP AND REMISSION WITH ABX..IT IS NOT TS...and EAmom was one of the parents who said don't give up..it was nice to hear someone else say it!!! second draw is when he was in bad shape was 160.. i believe it is chronic infection and the goal is to try to find out what it is and attack..some recent blood work is suggesting my ds has little or suppressed immune system....did the lacking immune system come first or did the infections come and suppress the immune system....it is a long, difficult road.. in the jouney you should aslo check other parts of the immune system to see if that alone is the trigger and support it where you can, because that will aid in recovery... thyroid, vitamin levels, yeast, c.diff, crohns,..check immune complexes, sub-classes.. check for mono, myco p, etc... if pen worked in past..then that may be the one your child responds to and you need to try that one again...not all children respond to the same abx....after a while some abx may stop working,...your child may be herxing..but i do not know enough about herx or your child to even guess...i am trying to figure that out for my own... EAmom and so many others have great ideas and info and this is such a great resource! Don't give up...

but. . . when you break a bone, they say you will never break it again in that spot. it heals stronger than it was when complete. there will always be a mark there and you can see it on an x-ray but it will be stronger for the break. it's all perspective. . . . i like your answer better!!!!

Let me lead by asking for any info on a 504...please pm me..because ds does well...and they know he has the capability...they are still fighting me when things are obviously tought for him... Em..just to give you another side, incase you haven't read some of my posts...ds was approximately at a 2 on the tic scale prior to startign lymes... he quickly ramped to a 7, including some impulsivity and add/adhd issues...its been 3 going on 4 weeks and we are still at 7. idk if this is a true herx...or yeast/c.diff. as screeches have always correlated with the latter....i did OATS test last week and waiting to see if its a gut issue or herx...most of me thinks it is gut...part of me wants his results to be normal so all the lymies here can say i told you so... ....but then i am scared no matter what the answer is because this is mentally and physically challenging and exhausting for him...and i don't know how long he will have to endure this. he stayed home last friday..as the tics were too much and of cours he tries and has to suppress...because if he screamed all day like he does at home...they would send him home(and he loves school)... yesterday..he came home and slept for almost 2 hours and then went to bed at 9pm...he NEVER naps and will be 11 soon i am not posting this to scare anyone...it is information..information is power...and once he makes it out the other side of what ever the H&^% is going on...we will have another protocoal to hopefully help more children.. lastely i did feel as though i was really maintaining his gut..he was already close to 200bllion probis a day and detxoing before starting "lymes" treatment... but if you start off with an already, irregular system, it is easier to mess up than someone with a better digetive track.. ie...if you have a metal rod...it is strong and true...if it gets bent..and you straighten it out...it is never as true as one that has never been bent...it will always have that weak spot

pharmaceutical co. get out of jail card http://www.cnn.com/2011/CRIME/02/22/us.scotus.vaccines/index.html?hpt=Sbin cell phones and increase in brain activity http://www.cnn.com/2011/HEALTH/02/22/cell.phone.brain.activity/index.html?hpt=Sbin just thought i'd share

sorry..i will go clean up

Sorry for the backslide..i know it is so hard to be somewhere good and loose it all.. we recently changed cocktail to pursue lymes..i think c.diff has shown up and we are treating that even though labs have not come back...and then will readdess lymes once stable... why did you change meds...if not pursuing other infections, can you go back to the one that worked? besides probis listed...there are a variety that come in powder form you can add to drinks and such... prayers and pvs on the way

Phas..great follow up..great find with new neurologist...shw sounds awesome!!!!! what are your thoughts on hd vs ld..it seems like you are getting such a great response..that if you had to go again...well....idk..just seems like that is the right measure for your kid.... how far was that for you? I wish you could have picked her brain on the lymes thing...now i am so curious..as you know that is the path we are on.... so you son had nothing marked for the igenex test... as far as kicking self....trying to set one of those pully systems up in my basement...you know the kind with the big boot on the other end!!.....(just realized ds does that as that tic is back in full force..no pullies..just jumps in air to kick self) and the reading thing is gone!!!!...is your ds at 100% then??? SSSSOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO happy for you!!!

when ds 10 was 5 the ped mentioned it...i was hesitant..but all the streps and other i could have saved us...ds also has terrible allergies..so as mucus builds, germs just get stuck and fester...then turns into infection ent said ds10 looked fine...upon removal..they were terrible..no current infection in them as he been on abx for many months prior.. when dh went in..doc was quite direct in that the number of infections he had and theire condition that takeing them out was a no brainer... on the panDAS site there are a few stories of children going into remission once they were removed...for those who flared..obviously there was an infection ligering and alot of them said they cultrued positive once removed... my husbands brother is contiplateing ta...but after seeing rough recovery for adult he has backed off..but like your son..he complains of constant swollen/sore throat.. he aslo has arthisits and psrorsis very bad and he is not 40.... a couple of studies out there about ta improving/curing psorsisis and i wonder about the arthisist...(his bro had impetisgo so many times his mom cant't couunt)

i agree..good choice of words... please do not let them do this..behavioral theorpy should not be done be trying to catch it out of the corner of your eye... it will make the tics worse the more attention drawn... what do they care if he is opening his mouth!!??? let my son come in stomping, screeching, and hitting himself...that will give them something to work on

this was a post from mati's mom on the pandas board.... Fluoroquinolones are not licensed by the U.S. FDA for use in children due to the risk of fatalities as well as permanent injury to the musculoskeletal system, with two exceptions. Ciprofloxacin is being licensed for the treatment of complicated urinary tract infections and pyelonephritis due to Escherichia coli, and inhalational anthrax (postexposure), and levofloxacin was recently licensed for the treatment of inhalational anthrax (postexposure). However, the fluoroquinolones are licensed to treat lower respiratory infections in children with cystic fibrosis in the UK. Within the studies submitted in response to a Pediatric Written Request (ciprofloxacin, circa 2004), the rate of atrophy was reported to be 9.3%.[61] Within the BPCA Pediatric Studies Summary for ciprofloxacin,[61] it was stated that the overall incidence of adverse events at six weeks was 41%. This would be consistent with the safety profile found with the other fluoroquinolones studied in the pediatric population. As such, the current ban on the use of the fluoroquinolones in the pediatric population is both reasonable and supported by various clinical studies. The most recent long term study, BAY 0 9867 Cipro Pediatric Use Study (QUIP), which followed pediatric patients from 1999–2008,[62] supports the current expert opinion that the risk of permanent injury continues to outweigh the potential benefits of ciprofloxacin therapy in the pediatric population. Within the United States, the FDA has stated it is their intention to pursue the licensing of the fluoroquinolones for pediatric use in spite of the evidence presented at that 62 Meeting of the Anti-Infective Drugs Advisory Committee that the fluoroquinolones cause irreversible joint damage in the pediatric population.[63]

regarding tonsils..... it is my understanding...that once the they are"over infected"my words...they become disfunctional...then they are just a harbor for yuck... it is not like they will return to their full, round, lively, functioning state...almost like a deseased liver... in our case ds has had roughly 15 known strep infections and dh is probably in the hundred area..he had his removed in december.. (unfortunately ds8 had strep in november that sent him into his first pandas episode, but has had many ear infections and ent said his look worse than the other 2 i just mentioned) and for the 2 ta's..i had them both on abx for a month prior to surgery and a month after.. i am not trying to push ...just giving you my info..and that i wish i had them out for both dh(grown man bringing/catchign strep 3 times a year) and ds10 years ago... i also wish i had started allergy shots years ago for ds...but that is hind site

thanks for posting this... not that we are using it..but if presented, will decline.

Scott sure does know his C. Diff. and i may be prejudice..but you will not find a better board..... disputes and all

This is just a thought..if it hasn't been discussed yet.. if cd57 doesn't start/kick in till 13-15.... that would be the age where some childrens symptoms remit...or ease so once the cells become "active" i guess...they do thier job and start killing unwanted infections... but just as a second thought/question... if ds is 11 and his cd57 is 16...wouldn't that still be low...not looking for someone to yes me...but asking...do the NK just kick in one day...or do they build over time?

This is why i am always reading...i don't want to miss any tidbit... not that i remember them, where i saw them, or what they are in realtion too...i just kinda remember ..bad thing, bad thing... anyway...according to wiki Quinolones, in comparison to other antibiotic classes, have the highest risk of causing colonization with MRSA and Clostridium difficile. For this reason, a general avoidance of fluoroquinolones is recommended based on the available evidence and clinical guidelines.[6][7][8] The majority of quinolones in clinical use belong to the subset fluoroquinolones, which have a fluorine atom attached to the central ring system, typically at the 6-position or C-7 position. do you use quino- fluroquinos...and risk mrsa or c diff..cdiff being suspect for my ds right now.... or..(we just started samento..i'm doing it withe ds to see if i get any/or some results)...because as we wait to see if it is c diff ..i didn't want to loose time...it takew about 2 weeks to get results... does cat's claw reduce effectiveness indefineitly, forever, or a period of time till it clears out...like 3-6 months?