Kiera

Did you read thenmama post "IVIG insurance appeal. Success!" She's described in great detail how to improve your chances!

YES! YES! And YES! This is probably a tic. When my ds was diagnosed, he had a chest infection which was the trigger, that turned into a "cough" that you describe, only to realize eventually that it was a tic. Didn't go away until 5months later, when we tried intuniv for ADD! Also, in the middle of the cough tic, he had a brief eye blinking tic. The cough tic is very common, I've seen posts on here many times about it! Now when he gets a pandas exacerbation, the very same cough tic returns and it always clues me in!

Please do share all that you can! Which insurance co do you have? We are currently waiting insurance approval, they wanted Dr to fill out more paperwork, also wanted quantative immunoglobulins (which were normal) so we're still waiting and I'm not too hopeful. But I do plan appealing if and when necessary, so I'll need all the help I can get with that! Thanks so much.

Arial95, please update us on the tonsil culture as I'm still on the fence about tonsillectomy. My ds's Ts and As are small, he never actually gets the strep throat now, but reacts to exposure, but his titers are still elevated, wondering if strep could be hiding out inside them??

Suzanne, you took the words right out of my mouth!!! I'm sorry my reply will be of no help to you as I am at the point of feeling the exact same way with all of this! My ds is so bad that my latest plan of approach is throw everything at the wall and see what sticks! Very scientific, I know! He's been on low dose SSRI since prior to pandas diagnosis (don't know if it's helping or not as I've never taken him off), on antibiotics x 1 1/2yrs, just did steroid taper (no response), saw ENT, Ts & As small, sinuses congested due to allergies - started steroid nasal spray, he's willing to pull tonsils if I want, but like you said, experts are divided so do I want to risk the surgery setting him off worse?? Am awaiting IVIG approval from insurance (not hopeful) and finally just saw pschy to try AAPs to try to calm the raging outbursts in the meantime, going on day 4 - nothing yet! Running out of options here, unless I fly to see expert on East coast, which one???, Then check for co-infections, lyme and go down that horrendous road, it never ends......

It is anti-inflammatory but more "poor man's ivig" as opposed to high powered motrin. Also, high dose taper supresses the immune system (motrin can't do that) to stop the assault on the brain. Sometimes used to get through a rough patch with temporary results, however I have read here cases where it put kids into remission for quite a while! I just did a 45 day taper unfortunately with no results (however was exposed to strep in the middle of it) and am now waiting ivig.

If you go to pandasfoundation.org and click on providers you will find the list of Dr's and there's plenty in Colorado!

Airial 95, could you post the contact info for dr Cleary, pm if nec, we're contemplating T&As, thanks!

One more thing to consider - if you have the means to pay for ivig at a later stage, then waiting may be an option. However, if funds are tight (and who's aren't these days!) then you may be closing the window on this option and end up regretting it down the road, if antibiotics don't work.

bulldog24, this is a hard one given all that you stated! I myself, am currently waiting insurance clearance for ivig, which I expect to be a fight! What I would give to be in the study, but my ds has too many comorbid conditions to even be considered, plus has it too long! However, my neighbor's 6yr old is just on the cusp of a pandas diagnosis and very classic so far, so I'm advising her to avoid steroids and keep the trial in mind, if things worsen. (She's waiting the screener to call back, and titers). It's so hard, she'll be in the same position as you, new onset, what will antibiotics do etc, but then for oldies at this who've been through the ringer, we didn't know at the start of this, which path our kids would take - improve to a manageable level or go down the chronic path of trying everything. No-one call tell the future for your child, only advise I can give you is to go with your gut feeling. My gut feeling would be go for it, in the hopes that catching it so early might arrest the onslaught in it's tracks, and put it into a long remission. IVIG does help tremendously with alot of autoimmune disorders. Just be advised, I'm looking at this through 9yrs of multiple health issues with my son, and not the typical kid one day/ psychiatric disorder the next day kinda kid! Let us know how it goes.

nicklemama, thanks for that insightful info. May I ask, why you are taking ds off lamictal if it's been helping? If symptoms return, are you planning on resuming? Is it because you've done pandas treatments in the mean-time which are relieving symptoms? Thanks.

dcmom, thanks for your insight! I'm afraid we may be in the chronic stage already! DS never really got back to baseline since April exacerbation, plus, to complicate things, he has had many other multiple diagnosis prior to pandas, but pandas symptoms are the worst. Feel like we're just in a holding pattern for months and months, waiting to see new Drs, finally getting ivig ordered, waiting insurance etc, time keeps marching on and daily life is difficult with ds lashing out and nothing happening in school, need to do something to remedy the present, for quality of life for all in house!

We just used our local generic lab here, probably quest (it was a few years ago) so if the gliadin is neg, more than likely not celiac (which is good) but you still may see benefits going gluten-free.I'm not familiar with the metametrix testing?? My ds did IgE blood tests for allergies and skin pricks which both showed he's "allergic" to everything, seriously, every major food group - corn, wheat, rice, soy etc but he's never had a true allergic reaction to anything! Can't explain, and obviously can't avoid all those foods, tried, but he lost too much weight!

My neighbor's dd 6 is going to the Dr today to check titers and we both are praying for pos titers as it will make her path so much easier!! Otherwise, the alternative is a completely normal child who 6weeks ago suddenly developed a psychiatric disorder overnight (post cold), and has OCD, sep anxiety, age regression, emotional lability and everyone saying it's just a phase - oh PUUULEASE!!!!!

You must clarify if you're going wheat and/or gluten free (Two different things)! You can have an allergy to wheat, which will show up on skin and igE blood tests. For gluten, you need an IgA (gliaden) blood test, if positive, more screening tests for celiac then definitive diagnosis can only be done by intestinal biopsy. Ruling out celiac (gluten) should be done first and while eating gluten (makes it a lot easier). Having said all that, my son tested pos for IgA, but neg via biopsy, but showed great improvement in symptoms after withdrawing gluten!! I myself feel ALOT better off gluten even though I'm neg for celiac via biopsy. You're getting into the realm of "unsubstantiated" "not enough research" world of gluten sensitivity, in which many people feel great off gluten, reason unknown - hence the explosion in gluten-free foods and restaurant menues with GF choices. The good news - finally the mainstream GI Drs are finally taking note and more research is being done to investigate this "no mans land" of gluten sensitivity! BTW, my son's initial improvement began to wear off and we had to add gluten back in after a year due to underweight, but it's worth a try.

Hi all, Is there a general concensus on a set dose of IVIG for an initial high dose treatment (not immune def)? Doesn't Dr K use 1.5g/kg? Is this what most the pandas experts use also or do some vary between 1g to 2g/kg and /or spread it out over several months? My ds's neuro wants to follow Dr K s protocol but ordered 1g/kg as she wasn't sure, will this be effective?? Thanks.

Hi all, Though I hate to go this route I need advice on pschy meds to calm ds down! Ped neurologist has ordered high dose ivig (ds will be first) so awaiting insurance confirmation, which may be a problem. In the meantime, she recommended a pschy consult for meds to help with explosive behavior, ODD, getting nothing done at school etc etc. Even if ivig is approved, it may be awhile before seeing positive effects, also "Saving Sammy" did some pschy meds during his 3yr healing period, I'm not opposed to meds to make life livable while at the same time tackling the root cause. He's already on low dose prozac (has been since prior to pandas for anxiety) but what other meds have you seen sucess with, or ones to definitely avoid. Many thanks for responses!

Burnell, can you tell me if it's necessary to have a pos throat culture prior to onset of symptoms (as opposed to pos strep titers) to be accepted into study? I've advised my neighbor (see post "Is this possible") not to use steroids as she should keep her options open. She's just starting out on pandas journey with 6yr dd, very classic so far except never did throat culture with initial sore throat as symptoms were mild. She's going to Dr today to hopefully get titers checked, hopeing this is enough for trial. She has contacted NIMH but awaiting their call back!

Many thanks for opinions. Unfortunately symptoms progressed to constant, serious and worrying intrusive thoughts and little girl having to tell mom every 5mins the thoughts. Also baby talk. Mom has app w pandas accepting ped today and 2 local pandas Drs for 2wks and 2 months out, just in case. 1st step to get titers. Will keep you updated.

just bumping for more exposure!!

Hi all, I previously posted on a neighbor's 6yr old dd (Topic Title "Is this possible") with severe separation anxiety post mild sore throat and viral cold, wondering was it Pandas with just this one symptom and me looking through my Pandas lens'? Well, sad to say, her symptoms have progressed to very obvious intrusive thoughts from a whole range of things with a need to tell her Mom these thoughts she's having, literally every 5mins. She's fixated on certain people in various settings, stating she doesn't like them and they annoy her, also reverted to baby talk (only around Mom) and then a few other odd things. So Mom got a crash course on Pandas from me this week-end, she's convinced, so will get strep titers and see. Both she and I are still in disbelief, not only is she a neighbor, but a close friend, who know's my ds's story. How insane is it that this is even possible?? Then I keep thinking what one of those Pandas experts said (can't remember which one) that PANDAS isn't rare, just rarely diagnosed! So another Pandas journey begins, just don't know what to do if the titers are negative? It will make things more difficult. BTW, does anyone know if the kids for the IVIG clinical trial need to be severely dysfunctional, is it OK if they are already on antibiotics (I know steroids is a disqualifier), do the antibiotics have to be ineffective? Because I guess if they worked, who would risk IVIG? Just not sure what type of candidates they're looking for, for the trial?? All help is much appreciated. Thanks.

Hi everyone, Anyone in AZ interested in meeting up can PM me their e-mail. I know three (probably four) in the Phoenix area who are interested and I've seen posts on here previously from AZ people, lets see how big our group will be. My ds has 2 Pandas Dr's and each sees many kids with Pandas. Looking forward to hearing from you all!

A question for the old timers on here who've read alot of the presenting pandas symptoms. My own ds has pandas. This question is regarding a neighbor. Her 6yr old dd suddenly one day, a few weeks ago, developed separation anxiety, especially regards school, but also going to other classes, grandma etc, requiring picture of mom at all times. She had previously attended preschool for 2yrs with no problems whatsoever, and transitioned to kindergarten like a breeze, very social, outgoing and loves school type of child. This was all preceeded by a mild sore throat and cold. A rapid strep was neg (at my coaxing but was done a couple weeks post sore throat), ped blew off PANDAS, said get therapy!! My gut's telling me pandas, but then since my ds's pandas diagnosis I'm looking at every kid's behavioral issues through the pandas prism! My question - is it possible to have pandas with just one of the common symptoms? Didn't Lauren (the sneezing girl) only have the sneezing tic as her only symptom? And then what is the likelyhood of two pandas kids a few houses apart? Tonight, she did come out with some strange feelings she's having and thinking so unfortunately symptoms may progress and a diagnosis might be more evident, but if it remains just the separation anxiety, what to do? Thoughts anyone?? Thanks.

Beth Alison Maloney is the facebook page. Beth and Sammy will be featured on the TV show "The Doctors" November 1st. You can get on her e-mail list and she frequently sends out e-mails with updates and listings of her appearances at book-signings, tv spots etc.

If anyone knows the answer to this I'd like to know also, as my ds is currently on a steroid taper but I would like to do some more immune testing. Thanks.