Kiera

I think they're too old, study wants 4-12yr olds, again, just to keep the study sample as neat and fitting in the box, as possible, for study purposes. Also, has to be a correlation to strep somehow, either swab, titers etc and maybe these girls don't have that as it may be a different bacterial or viral trigger.

Just bumping for more exposure!

Yes, there are 5 in AZ. New AZ support group to hold 1st meeting Feb 4th in Phoenix! I'll PM you, look in top right cornor of screan beside your name for message.

A quick question - for those who do ivig every 8weeks, is that high dose or low dose for immune deficiency? Thanks.

I am planning T & A for my ds. His tonsils look small and normal too, though his strep titers have been elevated for 1 1/2 yrs now. Just spoke with another pandas mom, whose dd had normal looking tonsils out last month and upon culture were full of pseudomonas!! So I guess you just never know what's inside by looking at them and after they're out, well it's one less thing to think and wonder about and it may provide alot of relief of symptoms.

The RAST test is a comprehensive blood test that tests for all the main allergens (I think you have to add on cat and dog if you suspect them). Skin tests can also be done by applying a whole host of stuff on the skin. My ds had both done. Dr says they're equally accurate. The skin isn't painful, just very itchy, especially if there's a lot of positives. The problem comes with interpreting the results! My ds showed he's allergic to just about everything, +4s (range 1-4) yet he's never had an anaphylactic reaction to anything, even peanuts, which is one of his allergies! He still eats everything, as there'd be nothing left to give him, so what does this all mean? Dr didn't really have a good explanation for it, it seems it's only helpful if your child actually had an anaphylactic rection and you're trying to determine what the causitive food is. I think it may be helpful if only one or two things show up, you could then eliminate these and see if it helps with any of the symptoms the child may have. As for my ds - I just think it's further confirmation of a screwed up immune system, over-reacting to everything, hence an autoimmune disorder - PANDAS, just my two cents!

They are "trying" to do neuro-pschy testing on my ds 9 right now. I say "trying" as I believe he's never really returned to baseline after subsequent pandas flares and has become very oppositional with school work, rages, sensory, meltdowns etc. I didn't persue it in the past as I thought insurance wouldn't pay, and we were spending our resources elsewhere, so when he got preapproval, I decided to go with it. Well, they said it could take up to 6hrs! I told them they would be lucky to get 1hr, in his present condition! So, he kicked and screamed, and hid under the table, and kicked and screamed some more, got a little bit of testing done in between tantrums. Went home after 2hrs of same and have to return this week for more, and possibly a few more sessions. Don't know how accurate the results will be as they're done under duress, but Dr said he'll take that into account in evaluation. Not looking forward to next session, I'll keep you posted!

A question for all the experienced pandas parents who have seen one of the following experts : Dr K, IL Dr B, CT Dr L, CT Dr T, NJ Dr N, NJ Dr L, MD Dr M, FL 1) Is this the complete list of pandas Drs (that actually see pts)that would be considered experts? 2) When choosing to take that next step, to actually fly cross country to seek expert opinion, setting aside location (have to fly regardless), what influenced your decision in choosing a Dr, given that they came from varied disiplines - pschy, neurology, immunology, pediatrics? 3) I'm leaning toward one expert but would value more input. I'm looking for the most broad-based Dr, willing to look at all angles and not afraid to move on to something else, if plan A doesn't work. 4) Finally, how does it all actually work? Blood work done in office or recs given for home state lab? Scrips out of state? Does insurance have a problem with out of state Drs? Do you need a local, colaborating Dr to work with (or the opposite, do most prefer to be completely in charge - thus frequent cross country flights!) etc, etc Any and all insight is appreciated, thanks so much in advance!

Just wanted to chime in that the 1st AZ pandas support group meeting is on 2/4 in Phoenix. I know it's not NM, but we're the next state over, if you find you need to travel, and need support! Contact kateazpandas@gmail.com

Hi everyone, We are setting up a new parent support group here in Phoenix, AZ. Our 1st meeting will be on Feb 4th. All those interested please contact me at kateazpandas@gmail.com. See you there!

The test is on hold - read my thread titled "cunningham's new lab, time frame for opening", it's gone from the front page now, but it explains the test! Kiera.

If all tests are normal, also gotta rule out child not eating as much due to hidden OCD fears, but this one, would probably be fairly obvious to the Mom, a sudden or even gradual decrease in appitite.

My ds had issues (PDD-NOS) prior to PANDAS, but it was managable, when PANDAS came along it was like being hit with a bus, BAM, OCD,new TIC (same one comes and goes with flares)sensory off the wall (had almost dissappeared prior to PANDAS) Rages, irritable, meltdowns and on and on. When things calmed down w steroid and antibiotics he returned to baseline PDD-NOS level. Also, initial flare was post strep infection w high titers. Now as regards the PDD-NOS, which he's had since early childhood, well was that PANDAS induced way back and lingered because we didn't check for, or treat as PANDAS, who knows? My gut feeling, yes, it's all related and connected to immune system dysfunction, as is all the ASDs I believe, but years away yet from figuring it all out.

EAMom, sorry, let me clarify! He has been on and antibiotic for 1 1/2yrs now, believing neurologist is moving on to IVIG, she's great, wanting to learn, just not a PANDAS expert like Dr's K,L,M etc, so she's trying her best. She did send me to pschy, only for some interim measures (ds ran screaming from her office, slamming doors etc, rages I deal with everyday) and I finally agreed as we're still persuing the PANDAS route and just wanted something short term. I was just being sarcastic in general, of how non-believing pschy scoffed at the notion of PANDAS no matter what way it's treated! Regardless, this is why I'm contemplating flying cross country to see an "expert" to dig deeper to find source, immune deficiencies etc as it's out of scope of neurologist though she's trying.

It can be taken many ways but the DAN Dr recommended the shots as that's supposedly the best way to maximize absorption I believe.

I can't remember the dose, it's been so long, but I think it was weight based. Don't remember any hyperness or even positive effect, but then my ds had lots of issues and we were trying a whole range of things at the same time, supplements, rotation diet, chelation etc. For the shot, you just have to divide the buttock in 4 and give in upper, outer buttock so it's accessable while lying on his back or by gently lifting the leg and rolling him slightly on his side. Where there is a will, there is a way!

Yes, Jag 10, I love this phrase "Symptomatic whack a mole" I'm going to be using it at the next visit to the psychiatrist!! My ds is in the same boat - ahead of the curve neurologist says PANDAS (high titers, flares with exposure) and psychiatrist says Tourette Spectrum Disorder (which encompasses ADD and OCD apparently, never heard of it)and what about the crazy sensory issues??? No drug for that! So as I'm waiting insurance approval for IVIG I went to unbelieveing pschy for a mood stabilizer to calm down rages in the interim only, so it helps "a little" but not enough, ADD drug causes more tics, add clonidine to counteract tics (does nothing) he's already on SSRI (pre PANDAS for anxiety), so here we are with a 9yr old loaded up with pschy drugs, still pretty dysfunctional and they scoff at the notion of giving an antibiotic, PUUUULEASE! Symptomatic Whac a mole exactly describes it, love it!

Will do, awaiting reply.

I did the B12 shots for my ds for the DAN protocol some years ago. It is given in insulin needles, which are very small, however he still didn't like it, so then I started giving it to him in the butt when he was asleep! He never woke up, usually just scratched his butt and rolled over, sometimes never even budged if he was in a deep sleep phase!

They just told me to use it sparingly with my ds, not sure why, but the stomach bug was short-lived anyway so he only got 2 doses total.

Yes, it works for nausea too, given for the nausea of chemo patients, works pretty fast, my ds was feeling much better when leaving the urgent care after a dose of zofran.

My ds was prescribed zofran 4mg (65lbs) a few months ago for a severe stomach flu. It melts on the tongue and works like a charm!

I think you can, I just think the complication came with running the lab tests only, her research is ongoing, but others here may have more inside information.

thanks for the info tpotter, I'll try e-mailing the university to see what they say! Bill, it's not a new blood test, it's the same cam kinase test she had been doing for some time now, only she had to stop doing it for legal reasons or something and is now setting up her own lab to run it.

Hi all, does anyone here have any idea of when they think Dr Cunningham will have her lab up and running? I had just ordered the kit when it got shut down last year. My ds is in constant exacerbation it seems, and I want the test to give more weight to the PANDAS diagnosis and am contemplating flying cross country to see a PANDAS specialist, thanks.