Fixit

I am so happy for your daughter and you.... thank you for posting so soon...i am sure you are busy with recovery.... What Wonderful News..... Great thoughts and continued healing to you and your DD

i have tried using it...no worsening.. i don't know if it helped.... theory is...use a teaspoon or tablespoon every day...and start now for allergy season...and use all year long....(of cours i forget more than a week at a time) Maybe i should give it a go again... Don't get pasturized.....you want the pollens...raw unfiltered if possible you can get a big a jar as you want ..it won't go bad....ever...

That can be an expression too!!!...sometimes my kid just wants to be a couch potatoe...overly so... but we have been on thyroid med for hypo thryoid a bit out of range for many years...docs said to ignore it...but it continualy stayed out of range ...long story...plus now they are talking or have ....moved the parameters even lower and that would make ds much more out of range.... but i also thought maybe his tics make him tired...or unmotivated as it takes so much to do things...

I'm Catholic, open to all religions and spirituallities...and never thought about or saw a need to convert .....but...........

didn't someone go to dinner, chinese i thnk...and right in the middle of a meltdown or something...it just stopped and stayed that way

i do not understand lymes fully...but if you get this reaction every time you are go on abx....it sounds like herxing...and therefroe..something isn't cleared out yet... did you do many months of abx..and or iv abx.....again i do not know the full protocal for lymes if i can throw out a question for ds....his band 41 came up pos...and aother band was ind one set but normal on the other set...our doc says he is not concerned about this.... any thoughts.

Dr T told me she is the Pandas/Pitand authority at UMDNJ and I also learned she's taken over the Pandas research at UMDNJ. I am very curious now to actually meet with her. Not until Aug though. You are talking about the same woman who will not even consider raising Danny's dosage to 1.5G???? That would be scary....as she is dismissing pitands too???.. but i consider the terms interchangable.... the Condition, reaction, presentation...warrents the tittle...the trigger should be irrelivant.....Infectous trigger, autoimmune response...something like that i think we need one acronym for the expression of symptoms....i think the subclassing is getting us in trouble!!

You are doing great!!! It is so hard...we are the ones kind of even guiding the doc's who know the most... And i doubt wht i'm doing all the time ....as you understand and i doubt what i am seeing..is he really getting better...is this a fluke....but this changed...so it it just this.... I just go up/out of bed an hour ago...i don't need to be in bed that long...i just don't want to be out here!!!! Just thinking out loud....since doc b doesn't know time and date, or approval of his protocal.....if you are seeing whateve small betterment with your current Doc i would probably keep on that till further notice...and maybe not mentiion to her your possible change...if you have already done so...there should still not be a problem, as if she thinks she is right, maybe it's then next infusion she gives that will be the break through....and i can't beleive she would want your boy, or you sto suffer in the mean time as a punishment to her hurt ego...(i not saying that's the case) We are here for you!!!!

I have been thinking about you alot lately..... i am glad positive things are happening....!!!!!!!! So your ds has been on high dose abx for 6 months now? how long did it take to see the break through....? I remember the conversation in April about iivig approval and then refusal.. were you seeing any hope/break through at that point....4 months of abx...or maybe the hope of break through. or did it really come about just recently...so it took 5-6 months of abx to see the light..... it is sad it takes that long....BUT, it would be encouraging to those of us who have only done a month here and there..or a couple months and didn't see much.. Thanks' Bat-S

i would watch very carefully..feb of last year ds started pullng hair...(thats our allergy season start) and had a bald spot about the size of a quarter/half dollar.. then april 6th tics stared....we have never left this episode...it's been a 1 1/2 years... now that i know ...1st day soccer practice..feb ....he comes home and i see him hunting for a hair to pull...i chace him to the shower...for him(really bad seasonal allergies) has now started this thing...he says it feels like a bug is under there..someghing biting him......he's also said if he dosesn't pull it out it feels like it will just fall out..... i wish i didn't put him in sprng sports...i won't in the futurte till his allergies are gone.... but think with the bad allergies..his body i fighting, fighting, fighting...i also think we go myoc p...and that was the end...as his igg was extremely high alomost a year later...and he did have a cough prior to onset..but i thought he was having a new reaction to allergies..the cough

i am glad for you.... are you comfortable with the higher dose..not that you shouldn't be....? if she is a good doc..like the people i am currently seeing and going to see....i believe they almost encourage another opinion..and you may want to go back and forth between them...... there are not enough docs with experience dealing in pan/pits and should welcome other thoughts...and that you are only trying to do the best thing for your child.... it's not a popularity contest...and you can respect more than one doctor

THank you Vickie and Norcal...and all i need to hear it from those who understand the dynamics, the picture, the possibilities my hubby is supportive but wonders..and when ds argues about taking his stuff.... i think you guys can hear my anguish true there are worse........and i am extremely concerned of what's coming.. there have been times ds could not walk because of his tics and we have carried him..we asked him if he wanted a wheel chair of course he said no... then it got relatively better...and now here we are...take me back to relatively better!!! i'm tired

Thanks norcla....the thought of doing nothing scares me too ds does get pain from his tic quite often..and occasional bruising.....i think it makes it hard for him to read...and he already doesn't like reading..(math guy).. on a side note..he used to have to use a colored overlay to track ...the difference in fluency with andw/o is amzaing....(white paper causes a glare) they are pretty intense...constant and the vocals...though he has a couple of friends going into 5th...what will happen...the coolness factor is getting more intense w/o being a freak...i love him and it's hard to be around....and what if it gets worse....its pretty bad now on the tic scale i would say he's a solid 7 going 6-8...(9-10 being incmpatiated or worse vocals.)... what if i get ivig and it makes it worse....i almost can't make it through today...let alone tomorrow or the rest of this week... making it to our appointmen with Doc L and B...are all i've got and keeping me together right now.. I am not really aruguing the point of trying all i can...but ds is tiring of this.... i am trying to say, all the conditions listed on this ACN board...are pitands,pandas varients...not seperate....just different expressions of an autoimmune trigger condition.... another problem/concern...is like Kay is experiencing....older onset.(so to speak)..we already know these kids are suseptible....(makes me think of people who have"ts" not..onset later in life30s 40s and noone fiugures it out...but that would better than your youth and young adulthood when i think life can be harder.. i agree with you...i'm trying to clarify...if swedo.docs k,b,t,l and who ever think this will resolve why are we not getting the counseling as parents to make us relax... because all ocd and ts and pandas are the same...and they don't know who will get better, who will fully recover...Sammy would have endup in a mental institute...who has ever been let out of there because they out grew mental illness???? I realize I AM MAD...that its taken this long....This long for anyone to listen to me personally..and this long to get the medical community to take it as a possiblity,,,,, especially when i put the 2 together 7 years ago...and my son is now in this state and didn't need to be!!!!!!!!!

would you mind sharing what she had??? if not that's ok... i wish i could get approval for ivig....i'm hoping boubiooluse can get me approval.. more important ..wether i get approved or not i want pex/pherisis....i'll do side jobs if i have too...

Can i ask how you deiced to procede with alleergies...what is doc B's thought on this...? did he say ivig might hlep with allergies..?

Can some panda/pitand parent come to my house and hold me..and tell me the answers.... i am having a bad day...it is torture to watch him.....i think he is soooo tired of it... he's been asking to stop all the pills...he says mom...it's not working....he has said "nothing is going to work...can'twe just stop" and yet i see him tiredof the tics..... that's why i want pex....to see some relief and to have hope even if it eventually fails to want to keep fighting!!!

THank you.thank you for hearing me... ..i am sorry your daughter is going throught this..and then to have such presentation later....terrible... i weep.....

THANK YOU thank for some answers and thank you for the support and wonderful explanation of what i'm trying to say!!!!!

one of the things i'm asking is...what percentage of kids do they think will out grow this???? what about the percentage that dont??? i'm not sure if i got 90% as the correct number but pretty close...am i doing more damage in the mean time if he will heal on his own???????? what of tics being the last remainer and usually the hardest to get rid of going forward into adulthood and the brain closes up.. do these remaining symptoms get locked behind the adult brain's door? whatever add/hd and most sensory stuff is gone..handwriting still crap..attitude great...(better than mine i think...actually i know)more flexible.but was never that rigid.. why does doc k say get thing done before they are 10 and definely before end of purberty?.............if these kids are going to recover... i think...they don't know if they will recover then..... and that what ties it to the (what some call)not pand/pits as it hasn't gone away but call it "ocd/ts"...because it does go into adulthood and they haven't figured out the locker combo yet... I'll leave the it's all the same no matter your presentation or dx, alone for now...even though i touched on it in my last statement... i'm looking for real answers... there is no one to talk to but us.... unless someone can afford to talk to each of these docs for extended hours...get their real thoughts, not just the ones they need to say to keep their liscense>>> and please forgive me if the tone ever comes out wrong...typing doesn't get the influctuation across.... i'm not really mad at the person who made the original statement...it just doesn't compute..and why am i , we doing this stuff to our kids, besides getting some relief...but going the big guns like pex, ivig.pherisis...if they think pandas is a seperate entity and 90% of the kids will have complete remsiion on their own.... that would have left the turkish men in their 20s..dx with ts with that dx....but realized there was prior infection and got remission with phersis.....

This is going to be long..and when I say pandas, I mean pitands too!!! This is prompted by a recent conversation with someone very well versed in Pandas..and some recent posts…and if you are reading this…no harm intended….it just doesn’t make sense Talking about difference between ts and pandas and lack of difference So I asked do you really think there is a difference..response was yes.. Then was told that pandas is “pediatric” and recovery is expected after purberty…14-16 regardless of what you do in between!!!!! WHAT???...if that is the case why are we spinning in circles..running, filling our kids with abx, herbs, steroids, ivig…. If that were the case and I was 90% certain DS would recover…would I be persuing ivig.pex???? Now lets go to ds…tics..dh…tics…on that alone dx would be TS I’m say no…someone out there has to see what im’ seeing…illness..tics ..remit….So ds camk above normal..not super high, but not normal….do another camk even higher..i correlated strep to tics and remission with abx 7 years ago(doctors rolling their eyes all the while!!!!)… ….(I would like to test dh camk…but I begin to wonder if camk drops as you get older) just as in now I can’t find a a particular infection(maybe gut issue)just his sytem is in a hyper state and needs brakes Dh still still gets strep…his brother has psorisi/arthritis..their mom lupus…dh only ticcer in the family and now my son…so if my son didn’t come along…would dh be more likely example of pandas not corrected…..Pandas/pitands run in families I know someone(friend of a friend) with “ts”(not)…as child,,remembers one combo tic..a jump while giving the bird…as he gets older it completely all ts goes away….great…goes to college…becomes dentist…decides to open his own practice……remembers being pretty ill around that time…stressed…..starts uncontrollabley saying f word in middle of sentences..dx ts…he’s ok with taking drug..as it is only 1/10 of what an adult would take and completely takes care of that for him…so ok…but….he is only one in his family with this…but does that matter…(he said why don’t you just put him on X….he’s surprised when I want to find root cause….he assumes what works for him will work for all I guess….I WISH).. Next story..PBS special a cpuple of years ago…ts people…not.. Young man in 22ish moderate tics…..turns out his dad “HAD” tics as a kid for a couple of years…but the went away…so now son is only one in family with tcs….all of the people on the program had overnight onset….another girl only one in family with pretty severe tics and another kid overnight onset THat family of 7 with ts…they are the only ones with this weird gene(a histamine gene) out of 700 other ts patients….??not great evidenc e other than a histamine problem in that family That gene maybe the cause of their condition as it has to do with histamines and we know allergies can trigger pandas…or it could mean they have pandas,which present as tics and this weird gene that doesn’t have squat to do with anything..or pandas and an allergy problem And isn’t it true they are both on the same onset and betterment schedule///8-15 years old (in general with some outside that range….) Isn’t it true no one knows if either will get worse or how much better ??? And just like a whole family can have psorysis, or arthritis..coudln’t a whole family present an auto immune condition like pandas too!!!!! THE PROBLEM is..this condition is triggere by more things than i can think of, than with any other condition!!!! so within one family..1 person gets triggerd by strep...another by myco p...another by parc...another by lupus..celiac..allergies..and then you can branch off from there and God forbid you have 2 illnesses or a gut issue or an illness and celiacs!! THE END!!

OMG>>>>who ever that is/or maybe it is...that oppent of jenny macarthy....saying vacinate,vacinate,vacinate...... Fridkn AMada peet....what a a/h.........even on screen she comes acrros like her s/d/s I am so fuming right now!!!

the current #7 reminds me of my ds...by anonymous....but i never put him on psych meds...but now looking for long term answer too!!

i can't wait to hear... hopefully some good stuff!!!

all the years ds has been on abx(3 times a year over 7 years????) i never gave probiotics so to add...the vocals(scream/schreech) didn't come in till...we started biaxin and burst...and though i added a llllooooowwwww dose probiotic..i believe his gut was in a bad state before we started(i've done spit test with him and dh and both get the strings) and that was the begining of the end...so i believe it will take more than a few months to get his gut in order... can someone who understands digestion confirm my last sentence???

if the burst doens't work....it is less likey the ivig will work..doesn't mean it wont.... but those who do well on the burst may not do we;ll with the ivig i wonder if those who failed the burst are just more likely to not do it and it messes with the ratios i wonder if for those who had a delay in burst response aslo have to wait longer for the ivig to kick in.. ie ..if you see response to burst quickly...you see response to ivig more quickly... so you've had 2 of these docs say it won't work? just playing advocate.....maybe because the reality as we go forward with info....it seems like 2 ivigs are required at minimum..... again.playing adovcate....just like when you read reviews....more people are likely to make a complaint about a product than write in when the product is great... that being said...this is not a product..this is childrens' lives...and it would great if all the success stories were to be manditoryly posted