norcalmom

It looks like yes, it can cause it, but it also looks like just the infection itself can cause symptoms at lease as related to cardis and arthritis. I'm not 100% sure. Here is a mouse study she did in 2005. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC548028/ the way I read it - the infection causes inflamation and tissue response in both an autoimmune prone mice, and non-autoimmune prone mice, but the one with the autoimmunity problems will get it worse. "Overall, our results show that an autoimmunity-prone NZB mouse can develop a greater degree of clinicopathologic features than a non-autoimmunity-prone mouse. Furthermore, there is a greater antibody response to the inciting infectious pathogen, B. burgdorferi, which is cross-reactive with host tissue." Her lyme studies seem to focus more on arthritis and cardis. They measure the joints after infection, and then biopsy the heart and count the cells. No mention of the type of neuro-phychiatric symptoms our kids have.

This sounds like a joke for Jon Stewart, it is so ridiculous. AIDS in Africa is neither "national" nor "mental" issue. how'd they get 800k of our money?

Does anyone know Lyme raises anti-neuronal antibodies as well as cam K? Or is it only cam k if uncomplicated Lyme ? I am trying to figure out if Lyme triggers the same weird antibody response as pandas (was it 24.1?) or if the fact that Lyme is present will raise cam k. I assumed that an infection with strep, Lyme, myco would set off the "pandas reaction"(molecular mimicry) and lead to a raised cam k along with anti neuronals. But I am reading some old posts and they seemed to state no, it is different, but it is unclear- that wasn't the topic if the thread. Does a raised cam k alone mean an autoimmune response is taking place? In which case ivig would not be necessary for lyme kids-they just need to get rid of the Lyme- it isn't an autoimmune reaction to the Lyme, like strep. Am I making sense?

I am holding off right now on doing a 504. We got a recommendation from phychologist last year. ds is "twice exceptional" - with a very specific learning disability - pandas related. Over the summer we did ivig. DS will not do any of the recommendations that come from the 504 plan - like use an alpha smart, or get copies of other kids notes or hard copy of anything written on board (he has problems copything stuff - esspecially math, although he can do it verbally, or in his head..showing work, or very long problems that require wrting and spatial processing at same time he cannot do). Or at least he couldn't do. We are giving ivig a chance to work. anxiety is something I am VERY keen on eliminating. School and grade anxiety esspecially. My son wanted to be in the excellerated math class. He qualifed (but by skin of his teeth) - but I said no. I have him buying into MY mantra that his health is #1, and I'm showing an example of this. I am in favor of almost no homework at this age to beign with, so why be in a class that is basically MORE work at the same level? Unless it is a true love and hobby and child is easily mastering and clammouring for more. I HATE that they are starting this stuff at this age. He's a good student, and gets good grades. but I'm not anxious to put any more anxiety on him than is already there. I've too many friends with older kids going off to college that tell so many stories. Check out the "Race to Nowhere" documentary we live in the area it was made.

Erica, I'm extremely interested in your experience. We wanted to go there, but the ivig clinic wasn't set up, and we were desperate to get it done before school started so saw Dr K. Now, my nephew age 13 (dx w/ADHD at 7 years, and tourettes at 9yrs) is investigating pandas after I had them do a cunningham test and he scored Cam - K of 189, and anti-tubulin high as well. My in-laws are looking to me for guidance, as I have been researching for almost a year non-stop. I'd like to make it easy for them - and if the Drs. at HIll Park Medical are knowlegeable I will direct them there. Mostly, it would be nice to have "one stop shopping" - all the immunological tests, lyme tests, strep tests, steroid bursts, anitbiotic scrips and ivig if needed in one place. Is that the case with Hill Park? I understand the nurse practicioner there has a son with pandas that recently recieved ivig there as well? DS will be 6 weeks post ivig on saturday. So far, so good. Its weird. I sometimes see new things, or things he hasn't done in a long time, but they are very breif. And we have days of no symtoms, and then a few pop up. Immediately we had improvement in mood. and immediately he stopped a mild throat tic. The other symtoms are in a reverse exacerbation curve - o saw ooth recovery. Just when I think it didn't work for us, he'll have a day with out a cumplusion he's had since last April. We had ivig on a thursday and Friday. My ds required TWO steroid pills (one Friday, second night of IVIG, and one two nights later) for migraine. And thankfully, Dr K had prescribed these ahead of time, just had me call him to confirm using them - after trying motrin and advil). And he vomited on that sunday night, all night long. I could not beleive the bile he produced. I was so close to trip to emergency room when it stopped. He had plenty of fluids, so much so he was about to float away, so I know it wasn't that. Some kids just react this way. It was one bad night, in the end not much worse than having the flu for a couple days. Hopefuly your daughter won't have this! I wish you the best and will look for your update on progess and experience with Hill Park.

Have you tried consulting with one of the pandas specialists? We aren't near one, but did phone conference, and fianlly IVIG. Seems to be working! Its tough to cordinate all the other docs and bloodwork. At some point I decided that I would read all I could get my hands on, make up my own mind about weather I "beleived" and only deal with doctors that had similar mindset. Not to say that I didn't go to many doctors to get blood tests done, I just didn't tell them too much about why I was there..case in point, local immunologist. DS had a low igg score on a test gastroenterologist ran (went to her bcs ds had diareah and I was concerned about antibiotics, and I wanted to rule out celiacs) immuno knew nothing of pandas, but i got him ot run all the tests I wanted (that I know I should have done from this forum, and asking buster for a list!) just by asking - what about this?, what about that?, and can we test him for XYZ too? that would make me feel better. At the end I gave him the antineuoronal studies from cunningham, and copy of mouse study too. I jsut matter of factly said we were looking into this thing called pandas. My ds had tics, so I was very open about the fact I was investigating anything that could make a child tic. He can reach his own conclustion - make up his mind for himself, just like I had to after reading everything. Find a doctor that beleives what you beleive. And follow that person's advice. Even if it is from across the country. We are spending so much energy trying to educate the doctors. I don't think they will grasp it that fast (I knew it would take months before this immuno got interested enough to actually take a risk on my ds and spend all the time it takes to educate himself on pandas. He has lots of other paying customers who just want allergy shots - why bother with my son? Its easier to dismiss it than investigate it. but I think my ds will start the process for him. I hope to go back soon and ask for some more tests (jsut check up), and tell him ds is tic and symptom free. And give him the reports again so he can read them, since I'm sure he probably dismissed them the first go round. He was politely interested, non-commital, but certainly not ready to administer ivig...and I (and my ds) had neither the time nor energy to try to persuade and eduacate him. But maybe seeing a kid that he didn't really help, but someone else did, successfully will convince him.

megs mom- You should email Dr. K. When I was in chicago we had coffee, and he mentioned working on anxiety in teens (primarily girls) that interestingly enough, often (always) involved stomach issues. We are not talking about pandas - just anxiety - I'm sure he could point you in right direction, he's been investigating the stomach anxiety link in terms of bacterial involvement.

Personally, I'd get another teacher. The whole point of keep him home is to avoid and minimize this type of contact. You probably have less strep (and illnesses in gerneral) with a group of twenty 14 year olds (sitting at induvidual desks facing away from each other), than a family with 3 kids under 10 - one will always have something!if she thinks she has a pandas kid..and possible untreated strep in the house "working itself out" ..no way!! I'd assume whatever is in her house is a good chance will be in yours.

That so great - I'm so happy for you both! I wonder if NAC would work for other compulsions as well? I'm too chicken to try it, we are 5 weeks post ivig and don't want to introduce another variable.

Play dumb, and ask if he has ever heard of it? I'm sure u will get a sense of his opinions by throwing it out there. U dont have to disclose u are talking to pandas specialist.

My ds had/has what we call a "compulse-tic". He looks very quickly onto the sun, it looks just like a head tic, and if u didn't know he was locating the sun with his eyes, that is what u would think. He's had head jerking tics, as well as other tics, but this involves more thought, so is it mire of a compassion? Who knows. I've decided it doesn't really Matter what u call it. It's involuntary, he might be able to surpress it for a bit but it's gonna come out. I say had/has because for the first time since last march ds went to baseball practice (always at sunset and sun is right in line if sight, which is worst ) and did not look into the sun! He had ivig 5 weeks ago. I've been watching like a hawk. I was convinced ivig wasn't working when on last Friday night he was head compulse-ticcing but looking into a street lamp. Never saw him do that before. It was late, we were a a big neighborhood party and it was after a long week at a new school...so now I think more a function of that. The whole ivig healing process is strange-I will post more about ds ivig when we have a few more weeks under our belt. Don't want to jinx anything, but it appears it could be working.

http://shutupabout.com/index.php?page=shop.product_details&flypage=shop.flypage&product_id=1&category_id=1&manufacturer_id=0&option=com_virtuemart&Itemid=28 check out that website. I think someone here posted it. Its called "shut up about your perfect kids" its written by two sisters who both have kids with special needs. One aspergers, one bipolar. Its very funny and sarcastic. They wrote a book too...maybe we should get them some cunningham tests for their kids tho...I see pandas everywhere!

Thanks Mary! Great article on plain OCD vs pandas.

c'mon west coast - I'm in!

Yes-I think something like 5 percent of adults immune systems are never able to build response to strep. And what about adult carriers, and mycop and Lyme, and other stuff that researchers now say can initiate this disfinctioal immune response? I don't think it is any coincidence that 70(?) percent of touretts kids stop ticking when they pass thru puberty. No one said that only kids could get or have it, it just happens that swedo only studied kids because she needs to make closest link to initial episode and the strep infection. I do believe that many of our kids would just get better, but also that a significant amount would get worse as adults. Treatment is all about getting our kids into the group that will get better, and about getting some quality of life until they are there. I too see pandas everywhere. I Just got my nephew-who was diagnosed with touettes 3 years ago by leading touettes expert) a camk test. 181, not in exacerbation. Huge history of strep- can't believe this kid never got tonsils out. I have to meet my SIL tomorrow to advise them. Next on the list is a family down the street... My very dear friend, who's husband cannot work any longer he is so dysfunctional, and one son who also fits the profile. Her husband has a personal research scientist a Stanford, no one can figure out what is wrong, he had elecro shock therapy- that's how desperate they are. I'm going to sponsor a camk test for the son. I do think it's everywhere, but I also think it is possible to have a mild case(as I think I did) that required no treatment...my sons best friend has lip and eye tic, but no other symptoms. I'm not freaked out about it, his mom knows all about pandas, but for some reason I just feel like it's a transient tic. I might have her get his titers checked just in case if doesn't resolve in couple weeks. It's hard not to see it everywhere. Dr k says that's why he doesn't deal with adults-he feels he doesn't know adults as well and might mistakenly jump to pandas conclusion because he doesn't believe there are " menta"l illnesses- just physical illnesses that involve the brain. So he's a bit biased by his experience, as are we.

Ds had general igg, iga,igm and subclasses done, but to my knowledge not mycoplasma. What are the specific names if the tests for mycoP? Something like mycoplasma igm? Is there some thing about other levels that might make the doctor run a mycop test?

I'm pretty sure I had a mild case when I was a kid. 4th grade was a nightmare for me, I mean literally, I had very vivid nightmares for several months so I would try not to fall asleep. I can remember having to pee all of the time, and nothing coming out. I also would pluck all the hair out of my knee caps with a tweezer, and sometimes pulled hair out of my head. I hid all these things. I remember feeling persecuted by kids at achool, but in reality I wasn't, I just had anxiety that I might get teased. All these memories are from around the same time, so I'm pretty sure I had a mild case. Whatever it was - it went away.

HI melanie - How long ago did you do ivig? ds had high does ivig 5 weeks ago. its kind of a roller ocast, and overall I think its working, but last couple days have not been good. Not exacerbation bad, but symtoms I thought were getting better post ivig came back. I hate the waiting. Its so disheartening when things go well and then you have some bad days, I feel like maybe the good days were all in my head. My son is 11. Oh, fish oil is suppossed to thin blood as well, so if you are taking that as a supplement and are going to add baby asprin might want to check it out with doc that you don't over do it.

I've noticed this with my ds too. I think that the part of the brain responsible for exectutive funtion must be responsible (and effected by pandas). DS is irrational over simple things,things I know he understands. He sometimes cannot behave rationally, do what makes sense, to acheive his goal. It comes and goes - but its much worse when he is tired or hungry...unfortunately, when he is tired and hungry, I'm usually tired and hungry too!

I heard about this today on NPR. Recently published in Scientific American. Its a new MRI that can tell what parts of your brain are talking to the others...its very cool, and I hope Swedo will use it with her pandas study. ..they talk about autism in the article and how brains of autistic people differ (connections do not get pruned - like they do in a normal aging brain) here is quote form the article: "This approach allows for calculations of "brain age" that are based not on structural development, but rather on how well structures are communicating with each other. A new study, published online September 9 in Science, shows the new connection-based model to be at least 92 percent accurate in predicting whether a person was a child or an adult based just on the neural communication patterns in their brain. " check it out: http://www.scientificamerican.com/blog/post.cfm?id=new-mri-maps-assess-connectivity-to-2010-09-09

Worried dad- didn't your ds also do ivig in July? Do u attribute change more to aug XR or ivig (if that was same son..or even same kid-sometimes I mix up our acn names due to my own brain fog)!

Just know exactly what you need for your lab before you drag your kid in there. Probably shouldn't scedule any other tests for same time. I would call and or bring the kit to the lab you plan to use to make sure you have everything needed with you before you go in with your child. We needed: An Order from Dr C. (which she faxed, it wasn't in the kit) An Order from a California Doctor to arrive before 11:00 Monday-Thursday (not done on Friday - no one to accept the blood) Check if other bloodwork to be done at same time excedes limit for child's weight.

thank you for sharing! just curious - is there a reason you did keflex...and for so long? I know Dr. usually does low dose amox for a year and then cuts you off! We are almost 5 weeks post our first and hopefully only ivig I'm wondering if that took weeks or months to see difference in your son. Do you attribute his healing to the ivig (and keflex to protect him?) or to the keflex and/or time? We traveled from California to see Dr. K in august. Thank you again for sharing your positive story.

http://www.iom.edu/~/media/Files/Activity%20Files/Research/VaccineAdvEffectReview/2009-JUN-24/Meeting-Transcript-6-24-09.ashx something interesting I just came across. This is a transcript of a meeting regarding vaccines last year. cunningham presetnted for 30+ minutes, first half heart related, second gets more into pandas... here is the table of contents: UNEDITED VERBATIM TRANSCRIPT TABLE OF CONTENTS Page Causal Inference: Steven Goodman 7 Biologic Mechanisms: Weighing the Evidence: 41 Douglas L. Weed Multiple Sclerosis: Stephen L. Hauser 75 Molecular Mimicry: Robert Fujinami 110 Molecular Mimicry: Madeleine W. Cunningham 134 Genetic Susceptibility in Vaccine Adverse Events: 161 Jason H. Moore NOTE: This is an unedited verbatim transcript of the meeting of the Committee to Review Adverse Effects of Vaccine, held on June 24, 2009, prepared by CASET Associates, Fairfax, VA, and is not an official report of the National Academy of Sciences, Institute of Medicine, National Academy of Engineering, or National Research Council (collectively “The National Academies”). Opinions and statements included in the transcript are solely those of the individual persons or participants at the meeting, and are not necessarily adopted or endorsed or verified as accurate by The National Academies.

I think Cunningham mentioned it in her preso at Austism One. I know that Dr T talks about it in his, as does Dr. B. I would have to review the tapes again - I bought them all - becuase Dr. C was FLYING though her info so she could catch a plane. And P. Mom had a meeting with Cunningham and her notes from that meeting(link below) say: "3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics." http://www.latitudes.org/forums/index.php?showtopic=9361