Fixit

Well Put!!!!!!!!!!!!

I wonder about this too... And i had heard...and sometimes agree, a tic is a tic...but we didn't have vocals till this year...3-5 eye blink,,,5-9 shoulder shrug...9..started in legs..now they can be anywhere and vocals started end of this FEB....so it's almost like it gets deeper... i've heard vocals are the are the hardest to clear....so is it harder to get to the deeper ones....or should it work in reverse order... VOCALS ..are the worst..they surround you, your child...i think they even realize, as long as no one is looking ..no one can notice...but sounds...constant sounds..it is hard to be around even when you love them more than anyone else ever will!!!! But...when my son got the screech/screem....scott thought it might be yeast???? so we did vanco and diflucan....day 12 all vocals gone i screw up abx..double down on antifungals and screems come back stronger than ever we repeat vanco-difluc....day 12 screech gone..but was filled in with sneeze(like lauren), popcorny clearing,ch ch, air pushes(but thank God the Screches are gone,,but it seemed he could surpress the screech in pulic better then the other lesser sounds that took over.... so i wonder if he still has some yeast going on???? ANd for my poor ds that is every 10 seconds and motors...some chained together with no pattern NO ONe should have to live like that!!!!!!!!!!! ANd a child.....i don't get what God has in mind for these kids!!!!!!

can i ask why the rifampin/aug combo??? what is the thought on rifampin? did you see that is should be taken for 3months....i don't know if that is only for tb...but if you take intermittanly you are more suseptable to drug resistant tb.... i don't know if that only applies to if that is what you are treating..

Fixit, does that mean that he had 4 doses of Prevnar? Can you remind me of how old your son is again? yes..prev.....and he is 10

i am seeings scott smith, the pa out of the dan office in fl...with 2panda boys also yes, but not much we can do with it..but the fact he's had all 4 and many streps means something...i would think going to see boubialouse..soon...i guess we'll see what he thinks... i am not comfortable with revax...i don't think that kid will ever get another shot.... i guess we'll be fighting with the middle school, high school , college... not trying to think that far... currently trying to get ahold of the principle..to talk about the coming year..as school starts 8/9/10....thought i would have done something before school started and had time to recover... going to talk acout current conditon...and the probalbitly keeping him out of school for however long if i get the go ahead with pex...... escpecially if i have to pay.... the pricnapla has been awesome so far...and the last day of school 5/25ish...i said i may have to keep him home next year for an extended period and he said they can work with that.......or have programs..so....we shall see... now i have to get rid of the 3 and 7 year olds...mosttly the 3 year old.....

So...... measuring any of these don't count???? wether they pass or fail??? not thtat it matters is guess in that case but ds only passed 2 of those mentioned but the test we did had 23....and he only passed 1 other one..... so the test has to be other eronious serotypes.....that doesn't make sense??..or i don't make sense more likely.... Kim can you explain this one to me too!!!

I am so happy for your son....I am so happy for you.... May you and he find peace and comfort with this and may it continue... And may both of your healings continue.... Thank you for your sharing too!!!

I am glad your boys are doing so welll.....jealous and happy my boy ALWAYS COMPLETELY responded prior to this onset at age of 9 more than a year ago... i unforturnately...i did worry about the future...but i always got complete remission and had no doctor who would listen to me...and no one would ever consider giving abx long terrm..... after convinceing the visit doc in fl..to give him something...(cephelixin) for ten days.(only because i told him of prior history....and we just saw him the day before, ds presenting with swollen glands,,,quick strep neg..waiting on culture.....whent that came back neg.. i started my brain balance,,,,tmj journey...even asking these people if they've heard of pandas....looking for anyone.... not until a year later did doc t at least start him with biaxin in March..OF 2010!!!! t I WISH I COULD HAVE HAD HIM ON LONG TERM ABX...that's what has had me so upset the last couple of days....i just keep wondering what if...would be going through this now.......i wish i could turn back time....life was sooooooo great then!!!!! 3 weeks after onset DH got laid off Stay on top of it pmom....i think puberty adds that extra demonsion

I am pretty sure doc k says as long as you are continuing to see an upward trend(bettering) do nothing....let the healing continue... if you see a downward trend for more than 2 weeks.....consider(keep a ready) to do another ivig i haven't spoken to him directly in months.... so if i can get a confirmation on this it would be great for me to hear too

I am so sorry you and your daugher are going through this ....truly... i too wish we were closer to the middle or end of the learning curve on this..... even if the docs had listened to me and other moms years ago when i noticed the correlation...we would be so much farther along..... it truly sickens the heart.... i i think....it was nancy d.( i could be wrong) that said it took a full 2 1/2 months.....10 weeks to see anything...and then recovery.... unfortunaley they had to do it again a year later....but....the same thing....10 weeks to see anything...and then recovery..... Keep the Faith!!!!!!

I remember "hearing" that, too, but I can't turn up any actual research to support that hypothesis. You would've thought that with other illnesses for which the drug appears to be a popular response (I see a LOT of uses of it related to sinus infections, for instance), the "anti-inflammatory" properties would have been noted, if not heralded. I'd love a point to some scholarly or quasi-scholarly reasoning/research to share with our doctor. I'm always living on the edge, concerned that eventually our purely "anecdotal" evidence as to DS needing this particular drug, at this particular dosage, is going to wear thin. My sons autism doctor wanted him on this AUGMENTION liquid for PANDAS but the antibiotics wreck havoc on his intestines... anyone else have to worry about this... and "yeast/candida" issues? my son needs to be on diflucan when he is on aug.....w/o it..it wipes out everything...lets yeast and fungi over grow and gives ds joint.muslce pain....with diflucante he was on it a month and not problems

bump.........

I don't know what "glycerinated extracts," refer to here, but I have looked at "chitin" as being a possible problem for allergic/PANDAS types. Dust mites, and cockroach and even cat hair may be causing reactivity along the same pathways? https://www.achooallergy.com/blog/chitin-suspected-cause/ Research Group Studies Chitin As Suspected Cause of Allergies & Asthma http://health.msn.com/health-topics/asthma...p;wa=wsignin1.0 Asthma and Allergies: Sizing up a Suspected Cause Thought this was interesting too, in regards to the dry eye complaints http://www.ncbi.nlm.nih.gov/pubmed/19512904 Acidic mammalian chitinase in dry eye conditions. that is what i was hinting at...not as eliquently or with as much understanding and knowledge either...smarty pants the reaction is a pit/pan..a trigger....i won't go on.. in the second bolded area...are you saying the chain looks similar to fungi or strep and so the body is attcking it in the same way

wetther it's pandas or pitands i dont think matters....it just means you know what the initial trigger was you need to figure what is going on currently..strep or other. the key would be to see if you can find something that youknow is a particular trigger at this point...he may have shed all the triigers and his sytem may just be in a hyper state... i also noticed low cholesteral......our dan mentioned something about that....also something was noted about myco p eating closteral.... make sure you check myco p igg and igm

Do you think they have to be mutually exclusive?

Exactly!!!!

can you explain...is this sort of like the ivig of drops? i thought it was your own dna...and then i didn't get what happens from there?

I love SF too.... my ds at this piont is only ts......mmmaaayyybbbbeeeee compulsions..and handwriting..(maybe sensory.chewing) when younger..add/hd...sensory...oppositional.....(those combined were mayb 10% of a problem) .tics would completely remit 10-12 times on abx alone... current onset we saw a doc the day before with swollen glands.etc...next day started to tic(no strep found..i'm guessing combo of myco p...and worst allergy day on record till this year it doubled) tics are known to be the hardest to get rid of....not for everyone..but in general...now double that by making that the main presentation(just like if ocd i main problem that would take long but, if i understand it is marginally easier to remit than tics)... now just because all these combo of protocols work so well for ocd...doesn't mean ts is different and mostly in boys...we just have to work harder at finding the combination to thier lock... my ds tics...my dh has a mild tics...(if i followed "traditioanal neurologists)he is just their version of live with it..good luck...we have no idea..50-100 years of following this thing.. and why don't they know....they won't look outside the box....or listen to me the 10 times i've gone in and said"Doc ...ds tics when he gets strep...."(NO CORRELATION MRS JONES!!!)..REALLY ...8-10-12times he got completely better on abx w/i one month each time now i just think that ds' system is messed up so bad..it will be harder to change the memory in his sytem....AND I need this board to support that!!!! just because tics are harder to get rid of doesnt' mean it's not all the same cr&^P Now lets add that ds' grandmother..(his father's mother...so its on the same side) has lupus and thyroid condition...her sister has mild mild ocd... ds uncle(same side) has psorisis very bad and is on ramicade and he has arthritis pretty bad for a 38 year old...and had impetiego the other uncle had a mild incident of ocd as kid....i believe i think, he had mild RF as a kid.. back to dh...still trying to get his antidnase down...(not crazy high) and he still gets strep 1-2 times a year..... A Traditional neurologist does not give a sh(*&t about this...has not run one test, lab, ekg, mri.....simply ..oh its ts.... ANd i fear some on this board would feel it's a death sentence of ts with no hope...as ocd is not an issue, and he is not responding like he used too, and if i get ivig and it doesn't work......IT JUST MEANS ITS HARDER TO GET RID OF I am trying to be peglem..nancyd ....and just not stop fighting ANd Betty...even if you can't gather all this kind of info...its pit/pans to me... I am sorry if i'm yelling...or ranting..or what ever....i just feel like this is true...and i needed to let it out.....and i don't have a person i'm talking about...it's a part of a sentence here...an adjective there..... i hope the thoughts are congruent enough to make sense Without this board...and all of you, i would be truly alone fighting this terrible fight... And in a much darker place

lupus,chorea movements..ivig http://www.springerlink.com/content/4k741l1064062429/

On our first burst it took 21 days...doc k says up to 4 weeks... doing taper...same as you, today is day 6...last couple of days were nice.,better.not great(tics)...... today...vocals up(throat clearing, sneeze sound)...but motors are still better less chaining in that area...... so not sure.....i thought we were seeing earlier resluts this time...might have to wait 21 days?? for us i wonder if like last time..even though we are smarter this go round and added difluacan, that maybe yeast is an issue for the vocals

in regards to the iv abx for lymes....i don't know where...but somewhere in the DC area is a huge lyme network..understanding, trials..i can't think of the word... and i believe its associated with a major hospital....lyme is a huge problem there.... if you could find it...got see a doc there...maybe they would have more pull in getting approval...maybe lymemom knows...

Buster, Do the answers you get from this survey allow you to run correlations between the different questions? For example, it might be useful to know the success rate of IVIG (from original question #3 – IVIG put into remission) and overlay with Lyme. Or, for example, IVIG success rate and age of onset (and age of IVIG vs. onset). There may be hundreds of combinations of these questions and it may take a statistician to analyze (are there any smart statistician mothers out there?). Just knowing the % that of confirmation via IVIG, ABX, etc. may not be as useful as knowing the % with, say for example, early treatment. So my original question, stated differently, is: are you able to match the answers of all the questions to each respondent so that different correlations can be made or do you only know the % of each answer to the individual questions? I was actually did quite well with statistics in college...but we won't talk about how long ago that was...i do enjoy numbers.... don't know if you'd want my help...i would have to refresh myself......i'll throw it out there...

Buster, Do the answers you get from this survey allow you to run correlations between the different questions? For example, it might be useful to know the success rate of IVIG (from original question #3 – IVIG put into remission) and overlay with Lyme. Or, for example, IVIG success rate and age of onset (and age of IVIG vs. onset). There may be hundreds of combinations of these questions and it may take a statistician to analyze (are there any smart statistician mothers out there?). Just knowing the % that of confirmation via IVIG, ABX, etc. may not be as useful as knowing the % with, say for example, early treatment. So my original question, stated differently, is: are you able to match the answers of all the questions to each respondent so that different correlations can be made or do you only know the % of each answer to the individual questions?

Did she exhibit this sort of behavior before IVIG? My daughter's rages have gotten much, much better since IVIG, but my arms and hands especially still bear a multitude of scars from her past life, so I understand how difficult this is. We do have a script for valium, as needed for my daughter. She still does a bit of SIB, but not nearly as bad as it used to be. But, sometimes, I give valerian root instead of valium and it does help as well. The other thing I have recently been trying (because I read a study that it lowers CamKII activity) is taurine. I think that is helping as well. My daughter is almost 1 month out from her 2nd HD IVIG- still using ibuprofen, still using valium (although much less than pre IVIG). We're scheduled for another one this Thurs & Friday. I don't know of any psych meds that would help. None of them helped my daughter, and we've tried a ot of them. At this point in your daughter's care, they would probably make it difficult to see what's going on with her. My daughter gets horrible, horrible yeast from augmentin- but I always know, because it shows up vaginally. Don't know how those w/ boys figure it out! We use diflucan for that, but diflucan does create some difficult behaviors for about 24 hours. She's on zith most of the time, which does not seem to cause the yeasties nearly as much! I wonder if prednisone might help? Peg if remember ds was the one whos' score came back 105...then you sent the thing about taurine..a couple of months later.... and out of curioustiy i went to check the aminos he was on and he was on taurine 2x aday for 3months and stopped 1 week prior to this draw and i will say at that point ds was at his best point since this original onset.... new test he's come back at 160....off taurine 4-5 months so my question is ...it reduces camk "activity"...can you explain that at all?? not sure what that means ??? would it have any other benefits??? i realize we are all learning, but maybe you had some other infor i tried to restart a bit ago but we had a flare and stopped it the next day or so.... started a taper about 5 days ago...seeing some relief...25-30%? last time it took 3weeks with burst,,but it was wonderful 50-70% better...maybe i'll get continued improvement as month goes on!!!!!! anyway....thinking about starting taurine again.... are you doing 1 or 2 times a day?

Michael, thanks for posting... besides your panda/lyme issue...do you have allergies....because i would love to hear how that fairs for you... to see if works..also as an adult, being able to give more articulate answers ...as opposed to"good"fine""'yes""(though sometimes ds is a thesaurus) .....that would huge for my ds...as we always seem to get one episode in the spring......And he looks like he's been beaten to a pulp, can barelyl keep his eyes open from inflamation, and so tired because he can't breath. But i have a question..if you can answer...how do they know what is wrong with your dna...since everyones is different..? also 450...is that per month or for the year? when you say binders ...do you mean this like charcoal.bentonite? Thanks Michael