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LaurenK, Please, I am so curious. were you given any more info? did the person who told you this think that there was any difference in treatment or anything regarding occurrence (or preventing it?) My daughter was tested for NMDA and was negative. When she was tested a researcher who we consulted with told us that there could be an entire subset of related disorders, and as of right now they only know to test for NMDA receptor antibodies. Of course, the PANDAS treatment of high dose steroids, pex & IVIG is also the standard of care for NMDA-R enceph- so the next step for both if biologics and TNF inhibitors(which you will get for NMDA but most likely not for PANDAS, yet) Any info you would be willing to share on the forum or on PM would be gratefully appreciated. Thanks.

IV steroids and oral steroids (given for asthma and poison ivy) (different kids, more than once each) have both coincided with a complete regression of tics and OCD/anxiety behaviors. These are not even my kids being treated for PANDAS. Their regression was for a few months each. One of the IV steroids was administered with IV rocephin. I wish there was a magic combo. Another child just started on Augmentin 1000mg XR BID. hoping that works for her!

I just wanted to show these to everyone, in case you had not seen them. I frequent the IOCDF website (only to give my eyes a break from latitudes ) They are great & if the mom in the first PSA is on here: THANK YOU FOR DOING THIS! YOU DID A GREAT JOB. I could not make it past your first sentence without tearing up. You are a tough lady! and of course, to Dr Jenike & his PSA: EXCELLENT AND THANK YOU FROM THE BOTTOM OF MY HEART. PANDAS PSA ' After you read the awesome fact sheet-- click on the 2 youtube videos on the right side of the screen!

hugs2day- is your 7 yo also diagnosed autistic? I knew an autistic child who did something similar to this. I think it is really interesting that you both are seeing this. I know we live in a big, big world, but I guess I just thought some symptoms were to bizarre to be reproduced! And, peglem, you are right- it must hurt her! Poor kids

Coram did home health Gammunex for us- ordered by our PANDAS doc. No ideas on doctors, sorry!

for what it is worth (probably nothing) my girls' all have had stuttering during their exacerbations. (never stuttered a word before!)

I know it is not as convenient- and may be logistically more difficult - but can you just do IVIG through Dr L? There or at the hospital or infusion center? And just not waste your energy on this doctor's change of heart? I know it may be the lazy route (rather than trying to convince your doc) but frankly, I have no energy or patience anymore. You will obviously find docs who look at the exactly same labs and see something totally different than another doctor or even change their own mind in an hour visit. frustrating and disheartening. I wish you the best. Oh- also, be persistent on both doctors. (I know you know that!)

You will need to change your tagline to a PANDAS DS15- doing awesome! I am so happy & inspired. Thanks! and happy birthday to him & you !!

Follow dcmoms advice. Get to a pandas doc. I imagine you might get a bad response- especially being that your son is 21. That is great that LaurenK has had good response, maybe if you are near NYC you can get some names from her I would go to a pandas doc. Sorry it was so frustrating. We have seen a great rheumatologist/integrative med/ LLMD who might be able to help you (if you happen to live near Northern Virginia;)

just noticed the NIMH IVIG study accepts ages 4- 12. hope that helps you!

This is wonderful. Thank you Dr Swedo and the July 2010 research group! Also- one thing I noted (maybe just a little slip?) But in the article, in the first paragraph on PANS - it is described as Pediatric Autoimmune Neuropsychiatric Syndrome. Otherwise, throughout, it is described as Pediatric Acute-Onset Neuropsychiatric Syndrome. Interesting little typo Love it, though. Wish my family doc had email and I send the link to him!

rjayne, We have PM'd before about OMS. This is so interesting, how you explain your view on this. I agree with you, though I know WAY less than you do. Our LLMD explained our child's illness (psych & neuro) in pretty much exactly the way you just did. I am really interested in the genetic testing. Can you post or PM me on what testing specifically? I have multiple children affected (as lots here do!) and know there must be a genetic link. We have nt had any done yet (barring HLA b27) which actually was done pre-PANDAS for arthritis issues- as we have a family hx of ankylosing spondylitis, crohns & RA (positive for one daughter). the other was checked post-PANDAS onset and was neg . I think you are talking about other testing. Can you elaborate?

way back when, our integrative med/LLMD gave this to my daughter. we only got a few in- the doc was willing to give it to her everyday at NO CHARGE because my daughter was so sick. my daughter refused the IVs. Also did Alpha lipoic acid. the llmd really this would help pull her out of the crisis she was in. I cannot say for sure if it helped, so many factors, but I have seen some pretty impressive parkinsonian videos post glutiathione. I try it again if I could get an IV in her!

bumping this...

I hope you can find otu if Dr B takes your insurance. You will find very few, if any, PANDAS docs take ins. It is financially crippling for most of us, honestly. I am bumping this up in hopes that someone else has advice for you. My advice would be to get your kid to Dr L or to some PANDAS doc. I do have a friend whose child (not PANDAS) had seizures after having their eyes dilated. I talked to a woman last week whose kid's eyes have been dilated for a month since her eye exam and also has PANDAS symptoms. Eye dilation drops are something I have never given a second thought to! I will now certainly. Given what you have been through, I think you should try to do whatever you can to get to Dr L. My child also slept a huge amount (20+ hours a day- only waking for bathroom and food) for 2 several week periods over the past 3 years. The OCD was still present between the sleeping times. There is an article on pandasnetwork.org that relates a case of KLS to PANDAS. It was the first time I had heard of KLS and I really think it described by child. I do not think Dr L takes any insurance. I hope you do not take this as harsh- but can you just get a credit card and take your kid? Once you see her- the other visit are less and prescriptions/IVIG whatever should be able to get covered. Your first visit is pricey, I know- but you will see her for a very long and helpful visit. This is a very difficult, long road and I know the toll it is taking. The good thing about Dr L is that she is in Maryland; she does pex, steroids (treatment dosing- not just pre-IVIG type) and pex. You will not get that mix with most other PANDAS docs. Best wishes. I hope this has helped you some.

Thanks for posting!Glad to have this. For those who are interested... Dr Cameron was president of ILADS. He has some excellent videos on youtube. Dr Rhee and Dr Cameron even have one on PANDAS.

Hi 1tiredmama- I do not know who your PANDAS doc is (or will be)- but I might have a guess If they are not good with follow up- I have 2 pieces of advice for you: 1. make follow up appointments BEFORE you walk out of that office. Seriously. If the doc does not tell you specifically when to come back; ASK. If you still do not get a direct answer- make an appt for 4 weeks then 8 weeks out. Cancel if you do not need them. 2. Do not be afraid to call the office. Call more than once. Do not assume they are "working on" whatever is it they are supposed to be working on. Some of these offices sees dozens of sick, sick PANDAS kids- with only 2 staff members and also have a normal medical practice outside of PANDAS. I cannot even imagine how they keep up. They care, ALOT, about our kids, but there is only so many hours in the day to do all the stuff they do. Your child sounds alot like mine. Though mine is 3 years younger than yours-- but just as disabled. Pex has been the most help. Dramatic improvement. sadly did not last. I have not searched far & wide for pex outside out of the PANDAS specialist, but I do not think you will find more than 2 PANDAS specialists who do pex. Pex is done lots of places for lots of things, but not for PANDAS. I so appreciate your rant. I think I have probably said the same things. It is terrible and I understand how you feel. I just wanted to offer the advice I have learned from our experience.

Who did you get to sign it?

What was the process of the neurotransmitter testing? was it lab testing or q&a type testing?

you should do a culture, definitely. I remember the video now- it is good to show that to Dr K.

I would keep that appt (March 9th is still a few weeks away). do you have video to show him? If not, it is ok- don't fret. We do not see Dr K- but I think he will take your word on it and I do not think he will recommend anything inappropriate based on your child's severity or lack of, at this point. I will say that I hope you can wipe PANDAS from your memory and it never, never, never is an issue again for your family-- but it is much easier to deal with any recurrence and increase in symptoms when you are already established with a PANDAS doc! I would see any doc you can and get yourself established with docs that might be able to help you if you need it - whether Dr K or whoever and a local neuro/ped. Also, EAmom gave you good advice--all of it really-- but especially to watch out for other symptoms that maybe related. The urinary & eating symptoms could easily get passed off as something and the thought "my kid loves me soooo much they do not want to leave me!"-- might really be separation anxiety! That is what I thought until I realized at 11 years old, it was a new symptom, and she cried every time I even went to the grocery store! Big time separation anxiety developed out of the blue.

If you can get abx, I would-- they seem to help alot of kids (even strep -) Augmentin also is used very successfully by many on here! let us know how it turns out!

Those are really good points, that had not occurred to me, as I have the overnight-onset type of kids & they also have OCD with tics as secondary symptoms. In fact, I was so thrilled by the article, I read it probably 4 times yesterday! I think they looked in my windows and described my kids to write it. It was so dead-on it was unbelievable. I do see how this really might affect (maybe not treatment-wise, as most of the doctors are treating these kids with tics, only, right?) some kids here, though. Actually, this might already be the case -- eljomom-- you do not get much response for your "happy" ticcer, right? So, in just looking at the criteria, briefly again-- the "tics" only kids could get swept into criteria III; that is Will these kids all become "tourette's"? Wow. Awesome paper from my point of view, but looking from others' situations-- maybe a big "ouch" Interested to hear what all you "tic only" parents think about this.

Excellent points (ALL OF THEM), EAmom. I still want to read where Mechtler said there was sexual abuse. He could be sued for that kind of talk- unless it is public record & in that case, the reporter ought to say so. Additionally, sexual (or any form) abuse against a minor would not have the victim named typically. Our PANDAS doc has mentioned the specifics of a typical "PANDAS-mom" & said, it may be true, but she feels that it is the personality, education and resources of moms of those kids that get TREATED. The rest of the PANDAS kids are out there, bi-polar, medicated, in jail, dead, who knows what. I feel so badly for these girls, their families and this whole town. I hope there is a positive report soon; whether in the national media, through the private you-tube accounts or even if they post on the forum, about some recovery.

Avoiding triggers brought us to the h*€# we are in today! obviously there is a huge physical component but USF looks bettereery day!