Kiera

Doesn't make sense to me that they would cover pex but not ivig since pex is much more invasive and in the long run would cost more than ivig (I'm sure cost is the defining factor!). JMTho thanks for your info. I'm going to hound them anyway until I get it. Local pandas Dr is trying (my ds is 1st ivig for pandas) but obviously she needs to learn the politics of it also, sigh!

My ds 9 is having Ts & As next Wednesday! I decided to go ahead after considering the pros and cons and posting here, asking for feedback. It seems the expert pandas Drs are split on the subject 50/50. Little to no research available as to it's efficacy regarding pandas. I've spoken with moms whose child's tonsils looked small and normal (like my ds) but were infected with some organism upon culture post-op. Read the post "my life with OCD/PANDAS" tonsillectomy cured her of it (just posted today) My ds never gets sore throats or swabs positive, yet his titers have been elevated almost 2yrs now! Neurologist/pandas Dr siad go for it, she's seen many kids improve post T & A ENT willing to oblige on advise of neurologist and elevated titers All in all, I figure, what have I got to loose. It won't harm him and it may help him, and it'll be one less thing to wonder/consider. Most Drs use coblation these days (radiofrequency) as opposed to electrocautery, so less chance of burning the surrounding tissues, easier, quicker recovery, done as out-patient! A word of caution - double up on antibiotics at least 10 days prior and 10 days post in case surgery causes flare-up and be sure to tell Dr to culture tonsills, sinuses and where ever else he wants! I'll keep you posted on my ds's outcome!

It mentions something about this in the book "infectious behavior" which I'm trying to read presently but keep getting distracted by the internet:)

Dr Jenikie's patient was an adult male, in a wheel chair for 1 1/2 years!! He did not go into specifics as to whether or not it was preceded by a severe trauma. All he said was he had OCD severe enough to paralyse him. Now, as to what caused the OCD - Pandas, or garden variety OCD, who knows. The kid I was referring to, resolved within DAYS, and occurred immediately post severe trauma. As regards Dr Seigel, don't be too quick to throw him under the bus. He was indeed one of the 1st Drs on TV to mention Pandas when the story 1st broke. I think he does indeed believe in Pandas but I just think he doesn't have as deep a knowledge about it as the Drs in the trenches who are actually treating it. I think he has a peripheral understanding (still more than most) I think he's seen both - CD and Pandas, and the problem comes in discerning which of these girls has which. I think he feels some genuinely have pandas and some CD as a result of the pandas cases. He's trying to walk the tightrope so both Drs may be right in some cases. Afterall, I don't think Dr S. has examined any of the girls himself, and even if he did, he's not a pandas expert so would not know entirely, how to rule that in or out. I still have the problem with a psycogenic response resulting in such a severe motor problem. But, you are right. Anderson Cooper said he's never heard of Pandas, like most of America. But after LeRoy, I think alot of people will now say "oh yah, Pandas, I've heard of that" even though they don't know what it is, so that can only be good, regardless of the LeRoy outcome!

First let me say, converting mental stress into physical symptoms is real, I have seen it. I have been a nurse for 20+ years and currently work in a trauma ICU and have seen ONE case of CD (psycogenic we called it). This was the case of a teenage boy involved in a motor vechicle accident, in which his friend, the driver, was killed before his eyes! The kid could not move his legs, despite me inflicting considerable pain pressing on his toenails (which normally would elicit an automatic withdrawl). He was awake, alert and seemed totally normal, except he couldn't move his legs! He was in shock, having just gone through a traumatic event, and his brain had a protective response by causing the paralysis, kinda like kids with prolonged abuse can develop multiple personalities as a way of coping! This resolved within a day or two, when he had sufficient time to process what just happened and realised he was going to be OK! Secondly, one of my other jobs was performing Tilt Table Tests to test people for a benign fainting disorder. We would have them come in fasting, attach to monitors, strap to table tilted upright and watch. We could see their heart rate speed up due to the stress of everything, the BP would drop, then the heart secretes chemicals to slow the heart rate and the patient would lose consciousness due to low heart rate and low BP. They would always shake briefly prior to this, kinda like the "pseudo-seizures" of the LaRoy girls. This is the mechanism by which people faint with the sight of blood, shots etc, there is a physiological mechanism induced by stress that results in a faint! HOWEVER : Having said all that, there's one glaring problem with the LaRoy girls diagnosis of CD. All the precedents for CD or mass psycogenic illness that have been put forth, have been examples of the body shutting down, body parts not working - eyes not seeing, legs not moving, passing out (from low BP). The cases of nausea/vomiting etc can be explained by the parasympathetic system inducing this due to stress (like jitters before performing). I have yet to see an example of CD causing the opposite, activation of the body - increase in motor activity, ie tics! Is there any precedent, anywhere, for CD causing tics, especially such violent ones?? If not, these experts are jumping the gun way to fast, with nothing to base it on! And Dr McV stated on the webcast how these girls tics got worse when she was looking directly at them and slowed down or stopped when she looked away, well yes, it is well known how stress increases tics (adrenalin surge). You can imagine a self conscious teen getting stressed, even momentarily, when the Dr directly questions or looks at her, then relaxes briefly when the attention is averted to her parents or eleswhere. Still doesn't explain the underlying presence of a tic dirorder, which now just varies hourly and daily, depending on the stress responses that are coming and going. Glad I got that off my chest!

Great piece! I think he meant CD for the guy in the wheelchair - however - given that he said the guy was so afraid he'd kick his fellow team-mates in the face that the fear of that paralysed him, makes me think he could've had PANS 1st, causing OCD to make him think he's kick his friends, then that got converted into CD in this case! Makes you think about alot of cases of CD, on infection triggering CD!

1tiredmama, I sent you a personal message (pm) the other day. Look for the #1 in the top right cornor of your screen and click on it to open message!

Hi all, Does anyone know where to find and official document with the proposed new criteria for PANDAS/PANS, stating it's from the NIMH, or are we still waiting on the official release pending the white paper? I copied the list from the report in the Batavian, regarding leRoy, and as my ds has 11 of the 12 criteria, I want to bring this to his many Drs, but want a more official version, stating the author (Swedo) etc. not just taken from a newspaper article! Thanks to all you sleuths out there!

Just pm ed you. Look for message in upper right cornor of screen!

Yes, it certainly can be pandas. Please read 1tiredmama's post "new here, waving to everyone". My ds started out like this too, and as the years go on, new and new diagnosis keep getting added to the pile. Just cut to the chase and go see a pandas expert to get properly evaluated and on the right track now. So wish I had done it 2 years ago, hindsight is 20/20!!

There are no words.........

Wow, reading your post was almost like a carbon copy of my ds 9!! The list of diagnosis lengthening every year and me thinking how can one child have so many different ailements, and exact same thing - each specialist looking at their system with blinkers on, like the body's not all connected!! So far I've done antibiotics, steroids, Ts & As planned for next week and I'm proceeding with ivig by hook or by crook, that's what he needs. And after reading your post, I'm determined even more than ever, to get off this track we're on. So glad you found us and praying your son is going to get on the right track now also!

A question to ask the fine Drs : If your child started ticcing tomorrow, would you doll out the conversion diagnosis or dig juuuuust a tincy bit further, maybe run a, lets say, strep or mycoplasma test???

I have 2 friends who've gone to Dr K, he gives you codes to use to get pre-approval and writes a letter of necessity, must have letter of pre-approval in hand prior to ivig, only part is paid cash up front and then re-embursed post. Otherwise, if for whatever reason you're not dealing with insurance then you just pay all in cash. Don't know what codes local Dr used, teying to find all that out now!

Just received denial letter from Cigna for 1st ivig through local Dr! So bummed right now. Seriously considering just going to Dr K who has the experience in getting it covered. Anyone here get ivig through Dr K covered with cigna?? Thanks.

Most of the experts recommend 1.5g/kg for pandas, the NIMH study is using 2g/kg I believe but that is under a very controlled envoirnment and the kids are purely pandas with recent onset. I guess they want the most bang for the buck to try to prove ivig works.

Hi all, We just had the 1st AZ Pandas support group meeting yesterday with 11 families represented and e-mails for 6 others unable to attend! We will only grow from here! I'm truly feeling the power of parents pushing this into the spotlight, is the way to go, to help support the few Drs out there willing to treat. We have a media contact and will hopefully do a spot at an oppertune time (possibly post LaRoy outcome, although that seems to be getting more complicated every day!). Every parent who hears a TV spot on Pandas/Pans will hopefully lock away that info in the back of their mind and for the unfortunate few who's kids develop it, hopefully will be saved years of misdiagnosis and get fast tracked back to health! Power to the people, get networking folks! Contact kateazpandas@gmail.com for az info.

My ds's mri was neg except for clogged sinus - t&a planned in a couple of weeks and plan to culture tonsils, sinuses and whatever else he can stick a swab in:)

Ours says <150 normal.

Dr Drew does sound a bit condescending when he talks about this, but it's obvious he's not onboard with the "conversion disorder" balloney, but he's sounding like he feels it's definitely going to be linked to the toxic situation. That may be just because he doesn't know enough about PANS, but at least he's keeping a focus on this, whatever the result may be, and he did call it PANS aswell, even though he screwed up the acronym in the beginning - all progress in the right direction for our cause! Haven't heard much from Metchner recently! Mmmmmmm!

I've heard that high lymphocytes and low neutrophils = recent viral infection low lymphocytes and high neutrophils = recent bacterial infection Don't know if this is true or not.

Yes I watched the whole show. The dickybow Dr did indeed say the NIH is looking closely at the infectious trigger cause and he expects this may be ruled IN, within the next week! Yes, I was shocked to hear this speedy quick turnaround too!! By the sounds of Dr Drew, even if PANS is determined to be the cause, all the publicity we hope to gain by this could be drowned out by the bigger story of the toxic plume sitting below the town, which may be the cause of many other health issues in the area, cancer etc!! It also may be a combination of the two, toxins weakening immune system, so PANS could strike. Who knows but hopefully time will tell!

PMed you.

Thanks for bumping again! This is the same group I've been promoting in a couple of posts here and have advertised on all the major pandas websites (one is undergoing restructuring) but we'll be well represented for those seeking to join. Please e-mail kateazpandas@gmail.com for more info. 1st meeting 2/4.

Lower dose steroids are for anti-inflammatory effects to temporary relieve symptoms, high dose steroids are for immune supression effects, to calm immune system to help long term symptoms I believe.