Fixit

this is concerning, as i wonder that too..... i was just speaking with a mom today, in regard to something similar.... i was wondering if per Nevergiveup.(.if that was the right person.)..who is getting monthly low ivig to their child... if that might have some merit... if i got this part right also....they started really low dose and are increasing it every month...almost like allergy shots......5g .7g then 1full g.. i just started my ds on allergy shots, with much hesitation, but he is more allergic than most here i think....so much so...i believe your standard procedure has 4 stages and doc b started ds even lower to have 5th stage...i believe an 2 months on the front end at super low dose building up.... i would love to know if i got the theory righit or the protocal right that nevergiveup is using...and if that is wrong person,please forgive me.... i wonder if you should now look into low dose and build up to counter act allergic reaction, if that is what happened? and if iga is falling but anti-bodies are high...with they fall naturally and you just need more time than usual to get that healing effect....like if you got myco p...never fully cleared it...got it again never fully cleared it...and by the end you end up having mp for4-6 months and cannot expect to feel right in 1 month after 2 weeks of abx....it would probalby take months to feel/be right....just another thought

Thanks for posting another great article.... I been saying that for years...and i'm just a lay person who's a people watcher...Infected i tell you... now that i got that out... i have a thought that kinda scares me.... if these viruses are intertwined with the dna....it would seem they are harder to rid... could that be what happens for some pit/pan kids who don't get treatment quick enought...(non-responders) is that why some are not seeing results with ivig or other big guns..(and i'm including lymes, celiacs, chrones, any auto immune, parasites)..it just gets intertwined in the DNA...? i would like to hear any thoughts anyone has... have they tried pex or ivig in any study, for the these people??? also what about high dose vitamin c...(not the pill kind...the intraveniuouse type) have heard it being used for cancer, and recently one case in australia for swine flu...guy on life support...and he's fine now...of course it's contriverail there too.....even after they say going to die...it's okay to pull life support but not to try vita c?????

In brief..you need to truly investigatet those high numbers... and for ds8..with those numbers and his condition, i believe you need to try abx sooner than later, and try different abx if the first doesn';t work...he is still young and abx may be all he needs my pediatrinc who is not panda expert(but freindly)...found my ds7(non-p) to have strep last week..and do to family history and panda brother doc put him on hd abx(more than he would traditional do) for his own well(so he doesn't go pandas) being pan?pits is familiar and to not contaminate rest of panda suseptible family

I think every child is different so i will never say no had this or that reaction from X My ds seems to get screeches in relation to over severe overgrowth of yeast or clostridia.... his yeast seems to be somewhat off most of the time..but its when it gets really out of wack.... that's just some of what i've observed for my ds....

Sorry you are having a rough time....I know you kids a have more on your plate than sooo many others your age.... And it sounds like your family has a history of illness, and you may be the one to lead them to recovery!! Hang in there...you are strong...and you know something is doing this to you...it not you!

If we could find a way to bottle, harness, direct hormones...i think we could control the world ..whaa.ha.ha..ha....and i would only need...one milllliiiioooooonnnn dollars!!!

Well...i thought we nailed it for while ..we found the last straw...maybe it was the clyndamycin...i got an extra 10 days..did great when it was high...worse low...better when high...worse as it went back down..but can't stay on that forever Then more allergies kicked in..ssoooo....we started singulare....had too try...this kid is super allergic to anything outside...dust mites, cats, dogs...got that in his system for about 8 days to set him up for allergy shots.... i know..i know....but ds pandas are all physical...so i think ...even the trich...i have to try... and doc b says he is so allergic..allergy shot are usually a 4 stage process...he added a 5th for ds and maybe becasue he is a panda kid too...so if we continue...we will have 2 more months at weekly doses than your standard allergic person... more to tell on that too...at one point..i thought the allergy shots healed him.... then down hill....over the course of several weeks... then this week ds ramps again...we go to ent for follow up...ask if he has infection ear, nose or throat...he says no ..and sure enough on thurs ds7 comes home crying...take to doc and he has strep.... I AM SO TIRED!!!! Calgon take me away!!!!!

You are a thousand % correct!

Well, that theory makes sense to me as it follows the trend of time of onset, worsening, bettering over course of life....

SSSOOOOOO Happy for you and your DD!!!!

Does Clostridia creep in when using oil of oregano??? Have you thought about oil of oregano.(ooo)..it is anti-viral, bacterial, yeast....so be really careful clostridia doesn't creep in..... well when you wipe everything else out...it leaves open space...so what ever is thriving best will take over....like sand at the beach....dig a hole, eventually water and the then the side sand fills in.. have to dose with higher probi'sss...and try to fill in with stuff that fights clostridia..like bifudus..and other regulars like cultrulle,,,,etc

I wouldn't worry about convreting the ent.....if he's agoo surgerion..stick with that aspect.. i mentioned to our ent...didn't seem interested...but that is not my panda doc... i have a pnada friendly ped...but resistant to long term abx...very interested in the articles i bring I can't fight anymore..i mention it..some times i take articles with me...and i hoping the battery of info coming out will the job...not quickly, but in a couple years it will be better(not great)among the other doctors so my panda docs are L, B and the 2 Dan docs...of course all out of state...

Have you thought about oil of oregano.(ooo)..it is anti-viral, bacterial, yeast....so be really careful clostridia doesn't creep in.....

just to add a thought.... i think the number of occurances and age play a factor... when ds was younger...he would have complete remiittance on standard dose of abx..and the last bit of tics disappeared 2 weeks later... this on onset was...to pick a number his 18th-20th attack...(3 a year since he was 3..this onset at age 9(over night onset with all and completely normal in between)..and they were always simple tics... this onset 1-2 years ago...was also not strep...it was myco p...more invasive, and chronic,,,i think and pre-puberty...and as the year went on got extremely bad...(did not know to look for myco p) so i think the 3 factors play into it... and if abx are helping...it certainly is taking a long time...

i don't know if this is of any help??? does this only happen at school??? could it be some chemical, something in the food, some child with a chronic undiagnosed illness? per conversation here today..about being exposed and child ramping... i was wondering what was going on with ds...well ds7 came home crying he was so sick...ran to ped before it closed and strep has come for a vist.... so we shall see if this is the case....i have never experienced a ramp just from exposure before...clad i didn't have to eat my words like i said in that post!!!!

i dont understand it completely either...and it seems far fetched...but i will never say never...and would regret saying when i have to eat my words...but it also makes sense... will try to do my best.. do you know how you can smell a smoker many feet away from you, even though they are not smoking at the time.... those particles are in the air...our brains can register those and translate it and say...oh those are cigarettes... well other particles are in the air...but they for some reason can not translate to our conscoius brain and say oh myco p or strep...but the rest of the brain says....mycop..strep....get the soldiers out to fight..... that is how they use dogs for people who have seizures or dogs that smell cancer...their sense of smell is more heightened....i would not be able to stand next to someone who has seizures and go...oh you need to sit down now...you're going to have a seizure in a minute So to me it makes sense on that level

I beleive that kid..... Just like my ds and i were born old. Know too much stuff naturally that can't be explained!!!!

Spoke to one of my Dans yesterday...talked about 5htp at 25mg..and ds and i not waking up... i had decided to try this on my own..i am very caustious when adding and usual do less than even docs suggest as i would eventually love to just be able to eat what my body needs and not supplement...but i don't see that happening...ie vitamin d from the sun...and not leaving the house because of motivation and searching the net for info on pandas leads to lack of vita d... anyway...he said try it couple more nights...about 3 to see if body adjusts... went to give it to ds last night...he said...mom is the one new one for sleep..i said yes...he said i don't like that one, i can't wake up...i told him the doc suggested we try for a couple more nights, i know it was hard to get up, and we'll figure it out... well he did alot better this morning waking up, said he slept good(remember i'm pulling teeth here)and we will see if this helps with tics as an anxiety issue ..... our dan said we can go more than 50mg...but like chemar, i don't know that i would ever even attempt that..

Phas...i know this is a decision that you thought about thoroughly....and i just want to vocalize..cause sometimes you just need to hear someone say..i support you. This thing is a long journey. Not for the weak!!!! We are all here for you and your ds! And of course if you change your mind..that's ok too!

cool...thanks,,,will try some time alot of balls in the air right now

Thank you for finding and posting this!!!!!!

tried 5htp for the 1st time last night..... recap..ds is 78lb and a ticcer...some hair pulling...but i wonder if some of his tics are anxiety, or just right in nature sometimes... so trying the ocd avenue a little... he seemed to do well on meletonin 1mg...3mg too much... i tried it...yes fell asleep, but woke up like a rocket,4am sevral times...then cant stay asleep i wonder if it effects ds same way...(he's a guys guy....not chatty, or cossipty at all..it's pulling teeth to get info out of him) so i thought lets see if 5htp helps sleep and anxiety.. well 50mg seemed like a lot, if 1mg mel..does a good job..so we split it.... neither of us could wake up this morning..i still feel...i don't know...off...tired..idk..or maybe that would be less anxiety...but feels sleepyish....idk when i talked to guy at herbal store...he said it effects late sleep the sleep after 4am... soo what do you do....take meletonin and 5htp, NO...just saying....1 gets the 1st half the other gets the second part i have tried valerian too...that isn't bad..not as dramatic in effect...i made need to up it on my next try... i always start at 1/2 suggested initial dose the 1st time...as you never know the effect on each person

did anyone catch this... how was it???

OH..Phasmid ...i am sorry you are dealing with this..... Try to take a deep breath......and take a couple more..... Try to stay calm....I know i shouldn't talk..... It could very well be teenage, annoying, irritating, inappropriate nonsense... he could be pushing the envelope for a number of reasons....stress at home, school, stress of being teen... you mentioned recently he is havinb body issues...and this can go hand in hand...yes maybe pandas, but hand in hand of...who likes me, am i attractive, will this get me the "opposite sex" attention i'm looking for...but doesn't quite know how to do it... I am not a psychologist...nor play one on tv ....but i do people watch.... Try to see if it is something you can talk to him about..if it is something deeper... In the mean time....i would arrange an appoint to talk to someone professional...and you can always cancel if you need to...

i just wanted to add these 2 links... it talks about not stopping steroids abruptly...but tapering them off(under drug interactions).... http://www.medicinenet.com/hydrocortisone_oral/article.htm and there is this thought started by dut http://www.latitudes.org/forums/index.php?showtopic=8976&start=0&p=74772&hl=hydrocortisone&fromsearch=1entry74772 does anyone have first hand experienc with hydroquortozine or a direct contact who used it?