Fixit

since thanksgiving son has something going on with left hand across all knuckles...he is right handed 3 weeks ago son sweating playing ball...says each time he wiped sweat from his head both hands felt like bees were stinging him. ped said put polysporin as that is better for someone with (i hope i remember this right) high allergies, or multiple sensititvies.....seems to be working then go to hydorquartizone once it settles down

Not trying to argue but i totally disagree.. My son would be tic free..... I would see a tic start,, get swabbed, pos on strep, get antibiotics and tics are GONE!! For us Tics would completeley remit after by 4th week post biotics..... I'd get oppostional behavior and walking on eggshells but that could be because they are sick... IE the sneezing girl( it is just one repetative tic) doesn't have strep, i believe she has Mycoplasma pneumoinae.. For us with this last onset ,,,,we saw a doc the day before his tics started...he said he didn't feel good, and everything from the neck up was red, swollen, fluids, shiners, slight conjestion doc said, neg on quick test...Woke up the next day a ticker.....i just think it is so odd we saw a doc the day before????? Still persuing other illnesses. From my experience,I'm saying strep makes you just tic. Pandas/pitands is not just strep. Maybe check out some of Dr T's thoughts/threads He has come up with a couple new accronyms, cute. Unless you are saying rule out as in, persue it till you can com;etely eliminated it as an option...that i would agree too....but now there are whole list of illnesses and i bet more to come,,,check herpes, lymes, epsteins, pyloria, ceilicas, mycoplasma pneumoniae to start, and you may want to check the pandas board on occasion. Besides the helpfull info over here! Hi Fixit, Bev and I live in the UK and our health service has a very different view on treating children who present with symptoms of tics. It's a gentle approach of monitoring for 12 months to rule out very common transient tics and for a dx of TS. Very few have heard of pandas/pitands. If we went to the drs asking for all these tests, they would think that we were "raving mad moms"! To see a specialist can take along time, and they would often want to know on what grounds you think that your child needs the tests for. The Drs here do not like to do invasive tests on children if they see no reason to do so. I believe as bev is new to this journey she now has to gather the evidence just in case it is pandas, and then have a justified reason to approach the gp to see a specialist. I don't think that it would be fair to say that abx can stop tics dead. If...it is pandas then I was trying to give a balanced view of the fact you need to find the right abx that your child responds to, and to remember even though our childrens tics cease on abx some pandas children only improve. If your child has a strep throat infection here, then you will only get a prescripton for a 5 day course of abx. Some of the pandas children are only showing improvements at around this stage of treatment. I was trying to give basic advice about the onset that most see with this condition, and also what our Drs would ask too. As her child is only having the tic symptoms then a gentle, balanced start maybe the most positive way to go. In fact in this country it's required. Our case was different, my dd would explode into a different child a few days into an infection, and our dr could see a clear unusual pattern, he was aware of pandas and we were lucky to have one of the few that do know of this condition. If however, a noticed change is seen with the onset of infection of any kind, then it is the right time to follow the evidence/specialist road. I have seen quite a few children with transient tics that often start with a change in lifestyle, like starting high school. These childrens tics settle when their stress levels lower. This is what the Uk drs will be looking for. If changes are noticed with a trial of abx (or even different abx) and a noted improvement in the 5 days, then it is time to take the next steps of reading up on the causes. A positive dx needs to have positive results to back it up. I was just advising bev to take the first steps and keep an open mind while doing so, unless she is blessed to find that one rare Dr that will listen and try abx/steroid just in case it could be autoimmune related. It's a beautiful country that we live in, but we are wrapped up in red tape with a bow on top PS.... Plan two, you could send one of the PANDAS Drs over as we are in very short supply No worries....and thanks for informing me how your system works....waiting a year to start to figure things out,,,i feel for you guys. i come to this board everyday to see if the cure was found and i missed the announcement overnight!!! At least on a good note it seems like every couple of months there are some new ideas that come about via the great people on these boards. Do you have alot of ts in the UK? more than 1 per thousand as they say here? And for my ds it wouldn't be gone in one night...it would be like a rock star till we started anti's and then after about 5-7 days start to see it deminish and be gone by 4 weeks....that was a lovely time, it wish it were back

i try to cook with tumeric...will that help? or in these cases do you need it more concentrated like curcumin....and what about the spice cumin???? i've heard tumeric is good for aurthritis and an anti-flamatory..i know some use it for that and it helps!!!

Yes, there was a cough in our case! Also some occasional chest pain. Also eye pain can be a symptom of mycoplasma. And on it goes, like a club within a club. chest and eyes.....just when you start the meds or other times.... we have had rare unexplained chest pains and occasional light sensivity and unexplained pain...

If anyone does...is it something you take forever, a year, till symptoms abate? And what about side effects?

Though I am Polish(purbread...only problem i have is stubborness)....this comes from my husband's side...who mostlly hail from maine...they are English, Belgium etc (Saxony)

Not trying to argue but i totally disagree.. My son would be tic free..... I would see a tic start,, get swabbed, pos on strep, get antibiotics and tics are GONE!! For us Tics would completeley remit after by 4th week post biotics..... I'd get oppostional behavior and walking on eggshells but that could be because they are sick... IE the sneezing girl( it is just one repetative tic) doesn't have strep, i believe she has Mycoplasma pneumoinae.. For us with this last onset ,,,,we saw a doc the day before his tics started...he said he didn't feel good, and everything from the neck up was red, swollen, fluids, shiners, slight conjestion doc said, neg on quick test...Woke up the next day a ticker.....i just think it is so odd we saw a doc the day before????? Still persuing other illnesses. From my experience,I'm saying strep makes you just tic. Pandas/pitands is not just strep. Maybe check out some of Dr T's thoughts/threads He has come up with a couple new accronyms, cute. Unless you are saying rule out as in, persue it till you can com;etely eliminated it as an option...that i would agree too....but now there are whole list of illnesses and i bet more to come,,,check herpes, lymes, epsteins, pyloria, ceilicas, mycoplasma pneumoniae to start, and you may want to check the pandas board on occasion. Besides the helpfull info over here!

thanks for posting that well if one takes extra tyrosine i guess some are saying it would be bad for tics...i guess i want to know why? and if you stop taking it do things go back to the way they were? so don't even test it? has anyone tried to take tyrsoine...or is it just too scary? and this paragraph from bonnies site: High phenylalanine in the diet can block other "Large Neutral Amino Acids", such as valine, leucine, isoleucine, tryptophan, tyrosine, histidine, and methionine from entering the brain. Notice that tryptophan is on this list, which is the precursor for serotonin, a neurotransmitter necessary for the feeling of calm. Phenylalanine is also a precursor for dopamine and may cause problems in TS where certain dopamine receptors may be supersensitive. so pheny's bad...but it blocks tyrosine which i thought that was supposed to be good but it also block tryptohpn which would be bad...i don't get it high phenylaline foods include wild game including buffalo which is supposed to be one of best meats going, fish etc and i just looked up all of these:valine, leucine, isoleucine, tryptophan, tyrosine, histidine, and methionine from entering the brain and they look like they would be good for you this on tyrosine from u of Maryland Medical center http://www.umm.edu/altmed/articles/tyrosine-000329.htm restless legs http://www.helpguide.org/life/restless_leg_syndrome_rls.htm and i'm not sure how reliable this is http://naturalmedicine.suite101.com/articl...s_legs_syndrome my son says it feels like socks are falling inside his legs and he tries to get them up...ie first link with creeping, crawling...but its during the day oh and he muscle tested low on dopamine twice maybe the problem is dopamine isnt' being taken up enough??? anyone's thoughts welcome

how long after rf did he get pandss dx...or were symptons there during rf? as consult with doc K i told him of strep episode at 5 yrs we couldn't shake with severe jont pains crying and screaming from pain...at time docs said reaction to penicillian now that i know more ,Dr k agrees and says RF. ds now 10 ....does rf trigger something later or make you more subseptible later? another questoin if strep is in gut, sinuses, anus....it's possible to still not have high titers, right?

i hope this is where the urine test comes in......when my boy started brain balance they did a panel and he show high in taurine, low and in need for tyrosine i thought after we added he vitamis we added the aminos and i thought he always seemed more wound , movements since then..i asked the monorator and he said no way just keep going...we stopped taking everything by end of Oct. .well i looked at it a couple of months ago it had taurine and i am still trying to cofirm the tyrosine..... so as per threads here i felt like taurine would be good and added it seperate....i stopped again....nothing monumental but i don't think my boy needs more taurine...i would like to get the test redone to see where we are but $$$$$ I am contibplating adding tyrosine....again if anyone could chime in as to why its bad....if correct it picks up more dopamine???? but according to his panel he has very low vanilmandelate and homovanillate which indicate a need for tyrosine. also his tsh was a little high which could be low tyrosine and half his tics are in his legs..again not sure if indication of low tyrosine or that tyrosine has helped or indicated in restless leg sydrome i

Amen...there is always that first person!

He wanted to know how they knew it was PANDAS then For some...diagnositc.......isn't it mostly diagnostic for lymes, lupus, epsteind,fibromialga,ts(laugh sadly), and a lot of other things??? that is why doc K thinks my boy is still pandas

i agree also and just like the link below someone posted on the pandas side, the neuros don't want to hear it...fingers in their ears...going blah, blah, blah http://www.ctv.ca/servlet/ArticleNews/stor...ub=TopStoriesV2 I met with another neuro yesterday(if you recall i talked with a neuro in PA about 2 weeks ago)...looking at chonidine(does it matter if its generic or brand name?)....but agian like the other thread i started, offered me no hope as to his future...None! So is this a death sentence....why is the only next worse thing a death sentence.."oh he could have cancer" that is why every parent who hears this diagnosis, i believe dies slowly inside....the neuros are killing me, killing me..... one more thng...looking at get ds a 504 plan..he his smart enough but his tics can get in his way...does this effect him as he goes to college or scholar ships or getting a job????

i agree..son had braces taken off 1month before onset..but at that time had a permenanat metal retainer installed...if it is his tmj i wouldn't contribute it to the metal (or couse he only had 8 braces) but more to the whole realignment of teeth, jaw

Just saw this as waiting for ekg http://www.fitpregnancy.com/yourpregnancy/...g-82410902.html so if it's effecting IQ, brain, what else might be going on w/i the brain from this once i found out i had a thyroid problem i always wondered if this would effect my first kid...i was on meds for other 2

seriously i've got to go but...son has allergies really .....i think i gave him a nasal spray like nosonex a couple of times(steriods?) any thoughts? after onset i gave him NOTHING other than vitamins.....we had no tics for 4-5 months prior...i thought we were home free(remember son said he didn't feel good the day before and doc said serious allerigies, glands swollen etc!!!)

Does anyone else think i should have less of a concern if it is 5 days at 1per 35 , 2 xs a day vs a 30 day starting at 20ml 2xs and tapering down each week till 5ml 2 xs a day. I guess should i not be as worried being on it less time , does a short burst make a difference? Chemar...how long was your hubby on his pred, at what dose, before he noticed his tics flare up? has anyone done it and regretted it and why? anyone with long term problems after? Got a neuro today too so got to go....

Does anyone else think i should have less of a concern if it is 5 days at 1per 35 , 2 xs a day vs a 30 day starting at 20ml 2xs and tapering down each week till 5ml 2 xs a day. does the less time on it make a difference? has anyone done it and regretted it and why? anyone with long term problems after? Got a neuro today so got to go....

Ds has had strep at roughly 10-14 between the ages of 2 1/2 - 8 so about 2-3 times a year, tic with each and remit complet by 4 weeks post drugs...I'm afraid there was too much damage prior to this onset which wasn't pos....titers low.... As per Dr K i'm doing acouple more tests. I guess per our history Dr K thinks he is pandas...and if i got this right, even if we fail the burst and fail ivig, he doens't feel it necessarily excludes pandas/pit for us, he is still looking for answers and info to( so no matter what i wil always be lingering out there,,,,unsure) Just Got back from endo..i told him we were gf/cf and it didn't get necesaarly get better at that point, but as i look back they were better than they are now.(as they seem worse)..he said it may take a year or more to get the inflammaton down and correct all that is going on That diet s.jlini!! i am going to do a lyme titer though i realize that may not be the best test but it's covered by ins. He's suggesting a stool sample to Enterlabs??? to get a real IGA test....he suspects there could be something there...but i'm getting a full immuglobuline panel as that again will be covered by ins. I wish i had these test done earlier....all the sudden i now have a couple of docs to work with!!

1) correct, 2-3tests////aso antidnase and mycoplama....then straight to burst...then stright to ivig i asked about abx and he says i can try if i like but that is not a long term solution or is would be trial at best....i don't get it...hasn't he done long term /or high dose anitbiotics for anyone here.....or is it just me 2) i don't know about ivig ...i guess if i had a 90% gaurantee and of an 80% recovery, i'd sell my house.....i know he is 10 and dr k said it wouldn't hurt to try, for a month at longest but that's it...i think he's concerned about ticking clock and that tics are the hardest to resolve.....but only a 60-80 %chance of working...gollyy.....and he said even if it doesn't work doesn't mean he still doens't have pandas 3) i'm not sure about ibuprofen....i get concerned giving it so i'v only given one 200mg maybe 3 nights in a row if things are really bad...maybe from being sore from ticcing.....can i give more than that he is 79 pounds... i'm concerned about bleeding/thinning i also give him 3 fish oil a night which i've read can lead to excessive bleeding if given too much 2)did cunning test...105 camk maybe marginal as per eamom and buster pointed out a couple low scores in chart

i have another neuro appt tomorrow???? its been about 9 months since i've seen this doc...she says her son and hubby have ts.... Now a couple of thing i know...missory loves company and i attest to that in my own life. And i've mentioned pandas to this and another neuro in PA that i cried about on the other board and they are not biting on anyone having pandas....i'm mainly going so if DS wants meds i would lilke to be more informed on them...i will now ask about the steriods though. thanks for reminding me BIG PS.....none of the docs have ordered ANY labs or tests...i have done them all myself....so all diagnonsis is on physical presentation(tics) not looking for any possible other causes...so to them everything is a duck...to me, just because my kid has feathers and wings could mean he's a duck or chicken or a sparrow. There has been no formal dx , it hasn't been a year yet,but even if they did, so what...they didn't run any test, no mri's and like Dr K says...nobody knows.what's happening with ts...at least he honest....and even though they may be starting to find commonalities in gene links, i would love to see if that very same gene commonality is the same for pandas and pitands Also on tics the board a woman recently said her boys ts went away after 2-3 years and is now back...and now questioning ts and i think might be on this board now...so being over year might mean diddly..if you are reading i would love for your thoughts So my concern is pandas and what if i miss the time line as dr k is concerned about his age and what if it is also now towards Ts after so many onsets and i really screw things up, AND go broke

right just the 2 weeks that's what i thought zith, was supposed to be better at this... Can anyone else back that up....and at what dose, since i have to go back to my ped myself? any reason you are waiting out the burst???

He wants me to go to my doc here(i thought he could do it too) luckily, which is why i went to my ped yesterday to try to get a head start on a doc working with us...also my endo is an out of the box thinker, but more with endo stuff and not too peditatric but i believe will help me where he can..so yah try to find a willing doc where you are. 60-80 is what he said....

Well, he said if i want to try antibiotics the go 875mg augmenton 2x a day? would that be the right dose and the right drug? he thought it would be a waist of time??? but when we had onset we only did 2 weeks of 250mg cephalexin 2x... he doesn't seem to believe in the saving sammy thing?? don't quote me but that was pretty much the gist... he said step 1...get new titers and a mycoplamsa test ,that's it ,,,,,i asked about lymes, said if i want he didn't think that was a point, maaayyybbeee if i were NE i reminded him we did live in PA 4 years and go up there frequently. step 2 steriod bust step 3 ivig.... and even if it is pandas and i am not trying to scare anyone but i'm freaked too...60-80% chance it works and that's if i can get insurance to cover!! Thats its..and don't get me wrong...he wasn't cutting me off...he just seems to have hoaned his work (i guess in my case) to just this;;;; Soooo....i don't know.......i'm afraid to stop writing..my options seem so few

Do you know or have any ideas why that happens? And is your husband better and how long did it take for it to get better? I just don't know what to do...again i would say pandas till this point, but i am doubting myself... The anitbiotics would always! work till this onset...But because i can date it 4/6/09 dr k still wants to follow this path..and this onset was also 1 tic but over time we add 1 about every 6-8 weeks????? we currently a have about 5 different kind in a day and rotating in and out with 7-8