Fixit

i pmed you

Steph...maybe he won't go panda on you.... until now...ds would only go panda with strep or bacteria... flu, virus never sent him into an episode.... keep his temp down..maybe some cold compresses...lots of fluids

We do too and I'm keeping my eyes reasonably wide open (but not dilated.....sorry, couldn't help myself!) I still don't understand how you monitor myco-p by blood markers? If it takes YEARS for the titers to fall, how do you know what is current and what was effectively eradicated? Plus, my dd10's myco-p was measured right before IVIG (1.62) and 9 weeks after (3.02) AND she was not sick in between nor was anyone else, it was summer.....so it appears to me the IVIG made her myco-p marker double... during this same period of time her symptoms improved, not worsened.... Dr. K speculated that myco-p antibodies/markers in the population in general have risen recently and this measurement reflects that..... I don't get it....how do you know what is going on with myco-p? Do you just go by IgM and forget about IgG??? I also wonder if myco-p, bcs it must be evaluated with a blood test, flies under the radar more than strep which is much more convenient to swab at an office visit? We know our kids can demonstrate atypical symptoms or no symptoms...what if when challenged with myco-p they appear to have a brief-er virus, or nothing but behavioral stuff and never get checked for myco-p, but that is what is going on? My mommy-gut tells me myco-p is my dd achilles heal and that she spirals downward harder and faster with that than strep, even though her strep titers can fly off the charts. ds has not had ivig...igg was very high...once we started abx it dropped in a period of months...but we had a slight rise just before things got bad here again......i don't know what it is now (we are better than that draw currently)...i would love to have a monthly draw on it also...i think it is chronic.....

that is one of my sons current tics, it was constant, i thought i was going to the er a few weeks ago, thought he was going to pass out, have asthma attac(not asthmatic)(but, i want to say at the moment that's all i'm saying) and i do think that mucus, snot..whatever can create the tic....if he is panda mode, if the episode never stopped...and i would say the urination kinda confirms for your ds my son is allergic to everything eviromental...so over the counter doesnt' cut it for him we have not had an allergy season w/o an onset and i do think if you had a pos strep 6 weeks ago..that you can have some lag... was your ds 100% prior?

1..i think both are possible probalbe 2...have not done ivig..but part A..both again...and also time3-6 months...to get real idea of how it's going.... of course i am one to talk...if i don't see something in 24 hours...i'm like..what the..... but as i go forward..i realize i may have to look at it week by week and month to month...i am not good at this at all....i need to take my own advise

i use myself as guinea pig....but may be bad control..as i am normal ..other than thyroid, which is minimal...i am trying to get get off of levoxly for myselft....i am questioning using this any longer... but will let you know... http://www.ncbi.nlm.nih.gov/pubmed/10850004 this one is against http://www.ncbi.nlm.nih.gov/pubmed/17023693 so i am looking more into kelp http://www.life-enthusiast.com/twilight/research_kelp.htm i can't say i have one i love....soooo...let me get back once i check out the kelp thing...and have my levels checked...as it has iodine....(good for low thryoid..which i and ds have) for other kids, i am using rainbow light gummies...gluten-free no milk, egg, tish/shellsfish, nuts, wheat or soy or yeast.... for ds i have carefully decided to add 500iu at a time...and are up to 1500...panda docs all said 2000...but we tried that and may have to back off...nothing big, but seemd better the other day.....1500is very good right now....maybe end of month when darker and less out side will go to 2000

also the source of vita d should considered...alot are fish based... i use algae based

Ditto on the vitamin D

Tears of happiness...i am so happy you got to experience this...this is more about you... yah she had fun...but you got to watch her have fun...that's the better part!!!!!

Thanks! Am printing this out now. if i could just add a couple while your in there.. mycoplasma pneumaiae. igg and igm thyroid..tsh t3 t4 vitamins D3 B12 Mins Mag and Ferritin the last 3 are basic to a doc and they usually dont' mind checking those

i dont' know if this is worth adding to your pile.. posted a couple days ago..about sepsis and memory loss...maybe it can ocd too...as we are learning so much about all the possible triggers or at least support how infection effects the brain http://pagingdrgupta.blogs.cnn.com/2010/10/26/severe-sepsis-can-lead-to-memory-problems/?hpt=Sbin

WOW...that is so good! And it supports the fact that even if you get rid of strep or myco p or lymes...there still may be other pathogens we don't know about or have name for, that are now effecting our kids as their systems are in a weakened state...

Well..as mentioned by someone...if ocd is an over focus on something...and nac helps to de-focus...i guess there would lies my answer as far as his lack of focus.. since this last onset ,1 1/2 years we have had some trich problems...prior to this onset..it was solely tics that would remit 4 weeks abx...so i think it was myco p this time and got further into system..more systemic, it feels like.... with that..i've been wondering if his tics of late have been ocd in nature, where once the tic is triggered by a sensatoin, he has to then get it just right...(this is me observing...he won't talk about it...hates to talk about it)... anyway...don't want to report just yet..(sorry i'm always saying that,,but seems to be a good idea for me so far)..we are doing a couple of other things...and !

I havent' read any of the other posts.... BUT, SO GLAD you stepped up and were not afraid to tell her about this... i ABSOLUTELy think it's pan/pits or an/its.... now the problem is getting her doc to listen and or children if she has any.... hopefully you can print out more and more info for her to take with her to her docs... The Elderly are not well listened too... when my parents were around and i would go to docs...the docs did listen to my parents...but they were SHARP till the very end..and a bit like mr and mrs claus...(God I Miss THEM!!!)...but i could see how others would be swept under the carpet and/or railroaded.... I have a great fondness and respect for the elderly... I am so PROUD of you doing this for her MWOS...this will come round!!! ALSO thanks for sharing it here!!!

actually i do enjoy reading this... but it takes an hour of uninteruppeted reading to digest 25% of it..make that 5%... dut can you link the other articles to this one..would be handy...

can someone answer that?? what does an increase in glutamate do to dopamine.. but is this 2 parts.. on cunningham there is dopamaine 1 and 2...would it effect them the same or differently??? and/or are these not related as they are anti dop1 and anti-dop2 i've been giving 375mg in morning... and aller-max after school the last 2 days..(has 200mg nac) the last 2 nights ds cannot fall asleep ..up till 3 am... things are good...but teacher has mentioned real lack of focus...not sure if i can just pinpiont that 2 the last 2 weeks..started it 20 days ago i will not give allerm-ax today to see if better..but there is no school, so he might something going on there i don't know about?? I'm still trying to wrap my brain around it, but sort of like dopamine levels, it's less about more or less glutamate than it is about glutamate modulation . . . I think. What's fascinated me is that, in an OCD study at Case Western University, they did brain imaging that revealed that, in kids with OCD, there were excessive amounts of glutamate in the caudate nucleus, a particular sector of the basal ganglia. And in Swedo's presentation at the AO conference, she, too, showed a slide of the caudate nucleus of a PANDAS kid and highlighted the fact that the caudate nucleus was larger/inflamed, as compared to a non-PANDAS kid. Sort of a coincidence, isn't it?! when swedo said pandas...does that include the spectrum of conditions or just ocd version in this particular case>>> so...could it be the body is actually producinge enough glutamate but it is getting stuck in the caudate nucleus (maybe because it is a swollan sponge)and glutamate is not getting everywhere it needs to go(not enough for reuptake)... therefore your asking the body to produce more by giving it nac, to have excess that can travel to other areas.... or do i have no idea of what you are possibly hinting or what i am saying..and my theory is ####

can someone answer that?? what does an increase in glutamate do to dopamine.. but is this 2 parts.. on cunningham there is dopamaine 1 and 2...would it effect them the same or differently??? and/or are these not related as they are anti dop1 and anti-dop2 i've been giving 375mg in morning... and aller-max after school the last 2 days..(has 200mg nac) the last 2 nights ds cannot fall asleep ..up till 3 am... things are good...but teacher has mentioned real lack of focus...not sure if i can just pinpiont that 2 the last 2 weeks..started it 20 days ago i will not give allerm-ax today to see if better..but there is no school, so he might something going on there i don't know about??

our ent did not want to take them out they looked fine...i pressed on..... upon removal he also said they were pitted and gravelly, inflamed and had stuff on them.... his statement was"well of course they were that way, with his strep history!" i thinking..didn't you say they look fine..of cours i didn't..getting ready to do dh an ds7 we have regained some of the ground we lost since doing the TA

i would think it would be the same...

does your child not do well with needles???? i think it would be great in terms of a direct hit to the illness?? but my ds has been through so much by 7 that needles weren't a problem...if you can convince him its really only a bad pinch...he will be scared but once it's done he might want to show off how brave he is...that kinda worked for my kid.... are you sure the blood was from the abx?

Blood!...you need to get her next stool and look at it..if its red take it to a doc... NOw my kids...if they get food colors(which i don't allow) that is the color of their stool...greens, yellows, red...ask her if she had anything red!!!!! the stool would need to be sampled for yeast

i personnally think each respond different to yeast...some get silly...like drunk... if your a bad drunk you would get violent perhaps... my ds gets screeches you can look for thrush in the mouth... a girl would have a yeast infection possibly.. our dan has a couple of things he uses to indicate clostridia...stool samples are best.... and as per discussion with other moms...i think some tests can be worng and when...when you wash, rinse repeat and keep getting the same results(pattern) it would indicate a problem there is a spit test you can do in morning which migth guide you.. look up spit test candida

we were told no...by a panda doc and a dan doc(who treats pandas)Not yet seen a llmd band 41 + And 39 ind... i think i believe that to be true,as we did ok with burst, great with taper and we maybe continuing to heal...sllllooooowwwwwwllllyyy, but why the band 39 ind(though ds has had bad sleep patterns, periods of not getting enough air and a couple of things that might be susspicious..i still think his is pan/pits(wouldn't lymes be pits)...not so much parasite..or maybe it is a parasite that might not be lymes) i just need to get my energy together and go seen a llmd to be sure...i would like to retest ds and test me... i am native NJ..lived along parts of delaware most of life...after stint in ga we lived in pa with ds..and frequent va, pa, nj, md, ct

I agree.

from what i understand myco p can hide..ie spinal column..i think specific organs. strep can go intracellular..so it too is hiding.. it's also found in anus, sinus and alot of peopple dont' produce titers from my current understanding..if it might be myco p...biaxin is best if strep the penicillina..preferably aug xr hd.. but zith covers both..maybe not best choice for myco...and there are some zith resistant streps also each child repsonds different and you may have to swithc abx