Fixit

I started abx 1 day before burst...8th day on abx....that's what i'm looking for...how far in before it lets up.his tics are down about 10% and he has not snapped at me at all today and very pleasant.....it's this frelkjonoi, screechy thing!!! i feel like it overrides my gain in mood and movements!!!!

I DEFINITELY NEED THE LINK TO HELP ME COPE.......he wasn't on any abx or anything other than vitamins and minerals...only abx was at onset 4/7/09 10 or 14 days cephlex 250mg 2x son at that time was 74 lbx, so wrong drug and low dose ....i haven't been able to get any other abx since and it's been 11 months A friend of mine who i just bent his ear (and he's one of the smartest people i've ever met and i think i've met some smart people...maybe that's why i feel so dumb) said would almost definfiely get worse before it gets better with the toxins and gases etc ..he's not a doc but he picks up stuff by reading it once....and he's dealng with some adhd stuff with his kid Did other people think it got worse other than a cough....did anyone dealing with anything here at Pandas feel like things got worse prior to getting better even when they were on the right abx or other med??????? PLEASE Maybe 10 % better in tics is what i meant....i don't even know anymore Someone PLEASE!!!!!

Ok 9 days ago son started levoxyl for thyroid 8 days ago son started 500mg clarithromycin for myco p .....so we are really 8 days in 7 days ago son started a 5 day burst 40 mg pred at start i noted his tics which are a bit more than moderate a solid 7 on a scale of 10(a good 300 tics an hour) ....i made this my sons 10 hoping it wouldn't go any higher and i want moon for my son so i was looking for a reaction 3 hours after 1st dose day 1 no change day 2 purple under his eys and remember we started pred this day day 3 tics may be less intense but? after 8pm started to clear throat, and a rasbery/horse flap day 4 had sore throat in morining tics same as yesterday...not sure if i heard a high pitch scream while playing, but it is his b-day...excited?? day 5 said he slept good and hasn't done that in ages but intensity of tics back up day 6 up through night sweating,,i hear scream chirp when exicted.(maybe every 1/2 hour)..we've never had this before...i'm freaked day 7 that scream tic there but it's so not noticalbe but to me maybe 1x every 1/2 hour but motor tics down 15%ish day 8 that screech is picking up ..just came home from school...i said it's ok...he said it feels like something is in there...i said is it a tic, he said i'm not sure..motor tics still down 15 % so maybe he's 8.5 from his 10...BUT THAT SCREECH....gave him l-carnitine last evening and just now.... i see l-carnititne is a fat burner..myco p uses fatty acids to thrive....is that why its supposedly good or vocals And i dont' want to read into this and it may be early but his mood SEEMS better....i'm scared of the vocal I just checked o him and its' pretty constant right now....what do i do????? AND IS this HERXING????? Can it get worse before it gets better

Or these children had these infections all along and were handling them until hormonal change brought them to the surface. Lyme Disease infections often surface during periods of hormonal change (puberty, menopause, etc.). Lyme Mom i could buy that

Another thought on the age when the kids seem to get MP if you notice it looks like the same age as many would claim TS onset so....maybe across the board, everyones immune system is lower during purberty onset and for those with ts ocd their body cant fight the battle

From your lips to God's ears! Dr. T Actually, I meant in the GENERAL POPULATION, i.e. someone you meet randomly at the mall or something, those are the numbers. That person would have a 20% chance of having a positive strep titer, 10-40% chance of having a positive mycoplasma titer and a 10-20% chance of having positive p41 IgG and IgM on Lyme Western blot. Assuming these to be independent factors (and they may not be) the chance of having all three would be about ) 0.2 x 0.2 x 0.1 or 4-8%. I think at least 50% of PANDAS patients have >2 of these positive and 20% all 3, much higher than the general population. So the key to PANDAS in many cases is co-infection .... Dr. T Could be that but if i may disagree on a purely personal and maybe pedestrian level DS woudl tic with strep...not other kids...i believe DS had Rf with the joint pain ..not other kids...not everykids who gets any illness will get the severe reaactons we get or maybe none at all....I'm sure i'm repeating things you already know or think But Now DS doesn't seem to get strep the last 2yearish...i wonder if the last 3-4 cases where he ticced were acutlly MP and since ds got strep so easily and the docs could see he was presenting with some kind of illeness(golfball galds etc and past strep history) they gave me abx and i got it early with the right abx(also maybe that's why ds igm isn't rising again because he got it originally 2years ago or 11 months ago) this time i got the wrong abx and its been 11 months, so i'm guessing recovery will take longer.... but what i am saying is his new trigger might have changed to something more invasive/evasive and its just MP (as his bb is closing).....or are you saying maybe he has MP and a virus and/or some other bacteria...Maybe treat with something like valtrex too???

I'm sorry if you've said this already.....but why dose this work....does it have something to do with removing fat from around the brain??????

what about L-Cranitine Fumarate i didn't realize what was when i bought it (the Furmarate) is that ok is it the fact it burns fat ...and maybe its the fat deposits the brain can't take that do the vocals????? i think my son is starting a screaming tic????????????????? it says l carnintine Furmarate 855mg yeilding 500m l-carnitine other ingredients.....magnseium stearate, silicon dioxide, cellulose.

So can someone put this in English.... if both are in the system influenza wins? but the influenza keeps saying attach strep even though its not there? and its the strep anti bodies that we think are attacking the basal right? so should we check for Haemophilus influenzae? will clarithomycine get that or azith, or something else? we haven't had a positive strep in i guess 2 years now.. but if we actually have influenza, could it sending signals to attach strep .the igg on myco was 631 on as scale that said anything above 320 was pos again to repeat, maybe the last couple of epsiodes were actually myco p caught early with the right abx(docs concerned about his strep frequecy so gave me abx)....just curious if we could have both...... sorry if i sound like an idiot or perinoid but i'm probably both.....

Yah i'll agree with you on that...and he does admit he is still learning too!!!!!

I don't want to start the same argument that happened on another thread about prednisone. I absolutely agree that kids who might have TS should be forwarned about the effects pred might have for them. But since you know that's not the case for Pixie, I have to second what DCMom said. Contrary to Dr K's experiences, prednisone put my son into a complete remission after his last episode. I think you need to make sure the infection/triggering agent is eradicated first, but our personal experience is that if this is done, the pred calms everything back down on a more permanent basis, much like it does for asthma. (assuming the asthmatic doesn't go back into a dust storm) how quickly did you see the steriod work....was is during or was it post burst?

agree do phone consult.....he was willing to do abx trial but only for a month in our case we've been dealing with this for a year....in the past when ds was younger he would get strep and we would catch it in a couple of days... now he is older and its been almost a year...so maybe at this point the myco p is in his spine or other organs ...and as per some of the articles 2 months almost seems a minimum and then maybe rotating w/ other abx... he is the guy from what i understand, you need to go ivig or other Dr K dose truly care and may be a little rigid in his thoughts, but maybe since he's had the most success he goes with what he knows...i think the myco p hasn't been dealt with that much and maybe this group is going to lead the way!!!!!!!

just called the nj one and they test the actual tick if you it....

is it too late to test...i start clarithomycine 5 days ago

We had live in pa for 4years-4 years ago...we also visit pa, nj, va frequetnly....and i have taken a few tics off of ds....can't say i've noticed iniital onset but some of the tics were in his hair so i woulnt see a ring he frequetnly complains of being tired, cant sleep, neck pain, migrainse, glare so the lab came up neg on the blood and i don't feel like that is our cause...but because of seeing tics and his current conditions i'd guess i'd like to just double check I do think our myco test is our answer seeing as it was always strep prior...and i'm so pissed for the docs who said no coreelation in a pissed tone because now,,,,when the last couple of times he(about 3 episodes) ticced but came up neg on both strep tests made me wonder why the antiboitcs still worked (they gave me antibiotcs because he is so prone to strep and on clinical vist could see he was fighting something and assumed the culture would come back poistive....it did not) ...so now i wonder if the last 3 times were myco but i got it early with the right anitbiiotc and not cephelcis(which i don't think he's ever had before)....my sons tics are more than mild ,.......on a scle of 1-10 i would say they are a solid 7 they run through his whole body....it's bad in his head, neck right now....but the legs seem consistant on this run....it's like i'm living with an elephant and i'm affraid the pictrues are going to fall off the wall......stomping.jumping......anyone else have this(when i read the mcyo p articles where the kids had it in their arms and legs made me feel like such a connection)

so not surprised son came up negative on lyme blood test per labcorp you would suggest igenex over a western blot? also son starte clarithoymichn today is his 5th dose can i still check for this, would it be worth it?

I don't usually post over here but i just wanted to see what was going on on this front I did the BrainBalance program...i know some have had great success...i went maily for DS tics but he does have adhd... i would say after the progam compared to now his tics were better at that time...but i thnk i am batlleing an immune problem an that is what is making him worse However his adhad seems alot better!!! I notice when i did the eye exerciese at home his eyes couldn't seem to track a pencil....so eye exercies combines with other physical exercises seemed to help...they also did something with colored lights in his left eye....their premiss is a brain hemisphere inbalance which,, as to my boy being a little better at focusing could be

abbe this is too weird or maybe kissmit a friend who i've been sharing the story of my ds with since this onset keeps saying dr chung , dr chung i said yah if i can get up there i;ll see him well she calls yesterday ...blah bl bl and again dr chugn i said wait a minute..where is the this guy she adores so much...morristown nj i wasn't dismissing her before but it wasn't a priority vist with all these other leads i have this guy almost "cured" her tmj or at least got her through and continues to do so and has helped her step dad tremedoulsy with his parkinsons

anyone's reply welcome how soon into the burst did you seen the benefit.....it was suggested the benefit would be seen when the burst ended, for a couple of days or hopefully longer

Here's one more from the pandas board http://resources.metapress.com/pdf-preview...mp;size=largest

what i'm asking is... she said that the b12 and mag are acting like a detox..don't you want that? Like when you are sick you have a feaver to sweat out the junk? I guess i was also trying to put it in terms of....instead of letting what ever is toxic in his body drip out..just dump the bucket and be done. Let the b12 and mag do its job things get worse before they get better analygy

mom2-2, you are such a wealth when it comes to the thyroid thing.....this is good stuff to know!!!! I love you...so it could be a particulare abx DS started thyroid meds a couple of days ago Getting husband check and for lupus..his mom has a version of it but it looks my dh has the butterfly is clarithroymycine ok is prednisone ok I can only speak for myself. I can't remember having had clarithromycine, but I have had Medrol packs (steroid) and have had great results from those, though day 2 was always pretty darn moody. I did not mean to suggest that everyone would be allergic to minocycline since I know that allergies can be very individual - but I wanted to raise it since this caught my eye since I also got much worse when switched to minocycline. Do you think there is correlation between lupos and minoctlcine or just you and lupus and minocycline(again thanks because i would have never thought of that)

I'm sorry and yes more antsie.

Just a question for you and Chemar or anyone Wouldn't you want to go through the rough period to get the stuff out ie empty out the bucket instead of letting it drip all his life, or no such thing I questioning a die off period like with Candida

We finished with the steroid burst on Tuesday, 02/23/10. My daughter symptoms improved while taking the steroids. By Friday(02/26/10) all the symptoms came back. She doing worse than before(the steroid burst). Today, her OCD was severe and she spent hours crying. I am very worried! Here is a sad thought.... Maybe things were actully wors than we realize as we start this and move forward....things get mildly, slowly better till that seems the norm...then when everthing wears off and you go back to baseline you've actually forgotten how bad it was(it just seems wore) I'll ask again...could there be a die off period with this that is ramping things up!!!!!