norcalmom

I agree. Cunningham found that Lyme infection causes the same rise in Cam K II and anti-neuronal antibodies as strep. Hopefully the white paper and the name change will clarify things. I'm not hung up on the type of infection that caused the condition, because as Cunningham found in her research, Lyme can cause the same autoimmune molecular mimicry reaction that strep can, as can pnemoniae (and who knows what else). In addition, just like strep, Lyme doesn't usually have this type of presentation. Maybe some on the forum just can't take in all the possibilities as once. Or, they are confused that Lymes disease alone causes these symptoms. It doesn’t – any more than strep causes pandas in most children. They both trigger an autoimmune reaction in certain children…and that is what our kids have in common…and maybe it’s the same genetic dysfunction in the kid – i.e. the kids that get it from Lyme are the same kids that would get it from strep, they just happened to get a different infection first? I think there is enough evidence to suggest this is true. So regardless, we need to eliminate ALL infection known to cause the “pandas” reaction. Preferably before doing ivig. I didn't really understand the LYME message until it was too late - but really wish I had done that test before getting ivig. Who wants to go through ivig only to have to do it again? Even tho we have no reason to believe lyme is our trigger I plan to do testing for it at 3 months post ivig if ds is not looking like 100%. PS - which doctor is only looking for strep?

I am thinking about having ds redo cunninhams test at 3 months post ivig if we are not at 100 percent. I know more healing can occur after 3 months, but I've been reading about so many kids that have gotten 2 or 3 HD ivig's I am trying to figure out if the Cunningham test can tell you any thing at 3 or 4 months, that would indicate your kids gonna need another. I'd also be really interested hearing if any of u that had to have a second ivig did a C. Test then as well. I'd much rather do 2 ivigs in a row than be at 80 perent for a year and then back to square one if ds gets flu or something.

He's got this comedy routine he does, and will make your child slightly uncomfortable, but not too much- sort if have them wondering if he is serious or not. I was skeptical too- turned out fine. He is with you ALOT over the 3 days, and what initially makes your child uncomfortable becomes a joke that they can banter about to keep the kid entertained and at ease. If u tell him ahead of time that your child is very fragile and doesn't take joking around well, I'm sure he won't. We found it pretty funny. Be aware that he might gender switch you child and say something like "you seem like a nice girl, would u like some barbies to play with?" to a boy. So if your child has any gender issues might warn him off that routine. Good luck. We are 4 weeks post. Making progress, but no overnight turn around.

I would go to dermatologist. I know it took a dermatologist 3 visits to diagnose my skin condition...which was done with a biopsy. Alot of rashes look simialr. The first time I was sent home and told it was just dry skin (it was minor when I first went in, but itchy)...next time (other areas of my body now getting rash) she thought maybe dermatiitis herpetiformis (this is found only with celiacs disease) finally she biopsied two spots and it was lichen planus. An autoimmune disease.

have you or buster seen uncovered any research on D1 or D2 anti-neuronal antibodies and the c. Acid? I know the research on the C.acid is with dopamine, and since many (all?)our kids have all these dopamine related anti-neuronal antibody issues, just wondered if there was something connecting them. In our son's case his D1 and D1 were normal...but cam K and antiGang. way off. I recently viewed Drs. Swedo and Cunningham presentation(on the CDs I ordered) from Autism One conference, and I think I remember that the antineuronal antibodies lead to dopamine disfunction. Dr C was flying thro the info so fast I couldn't really keep up (much less comprehend). I need to review that CD.

hope you bought a lottery ticket yesterday! WOW! you know, I am sure you have worked hard for al that to happen. Can't attribute it all to luck. More like a job well done..it sounds like its about time something swung in your favor to make the job a little easier.

Thanks everyone! I think Michael is talking about the antibodies to the lyme bacteria..not the actual disease. Although, yes I agree, its scary. It took me along time to finally have ds do it.

Thanks EAMom. I've secretly kept him at twice per day, (basically double the prophylactic does prescribed, but still not full dose) but since our doc here has prescribed Azith, I think I will switch him back to Azith for a couple months. I didn't like the idea of switching something like this right away, but with so much going on with travel and ivig I just did as I was told. ds has never been on amox before, and don't really see it talked about on pandas sites, its usually azith or augmentin. And I'm seeing posts that that indicate he usually does augmentin. It weird. I'm going to email him. Thanks again - you just verfied my gut instinct!

I all, I just checked out the igenex website, and was wondering if anyone could advise on which tests I should order for my pandas son. I don't have any reason to suspect Lyme, but definately want to make sure it is not playing a role in ds's pandas. We never proved a strep infection with cultures or titers (although I'm pretty sure I treated a mild case of what I now know is peri-anal strep with antibiotic ointments) several weeks before pandas onset...but seems that researchers now saying Lyme can casue it too so I'm getting him tested. We live on the West Coast, but we travel to the East Coast for 2-3 weeks every summer. Additonally my son makes no anibodies to strep pnemoniae, and has low IgG, so I don't know if the tests that measure antibody response will work with him. Is "complete Lyme panel" all we need? I've read he has to go off antibiotics for 2 weeks to take the test? REALLY don't want to do that. I'll have to see how things go. We are 3 weeks post ivig, I'm hoping not to have to take the test becuase IVIG works so well, but getting my ducks in order in case it doesn't.

I’ve been reading a lot that Dr. K prescribes Augmentin post IVIG…and I’m wondering why he prescribed ds with amoxicillin. He started ds with 2 weeks on full dose, 875 2x /day, and then down to 500mg 1x/day. Which seems really low to me. I’m soooo nervous about school starting on Monday – ds is only 3 weeks post ivig. his is 10 yrs 97lbs. Has anyone out there had bad experiences with strep break thu on amox? I think Amox is broader spectrum, which might benefit ds as he is PITANDS, but sure would be nice if it was immune modulating, and I don’t think amox is, just azith (and augmentin?) I have the scrip for Azith, and I’m thinking of emailing Dr K. but thought I would find out what others experiences have been. Thanks! ps- so far so good, its gradual. Mood is very improved , and compulsion to look into sun slowly improving. Not much improvement in intolerance of me swallowing anything, coughing, clearing throat. Still wetting bed (but as I posted before I’m taking this as a good sign that things are still in flux in there, as he only wet bed when heading into exacerbation before. He’s definitely not in one now (nor when we did ivig). Still waiting for that “miracle conversion” moment.

just re post with a title that says- this survey for HD 1.5 ivig only. Please do not responde for lower doeses, or higher doses.(or whatever dose you are interested in)

My pandas son has 15 cousins on my husbands side alone. Several years ago one was diagnosed with TS, add several years before that. They are controlling with drugs(don't know what.. But one for ADHD one for ts). After I got our sons cunninhams test back, I sent them info and had to convince to take the test. They didn't really want to, they have consulted with some touretts expert and are pretty happy with sons current medicines. I finally talked them into taking the test, results back today. Cam Kinasae ... 181. They wouldn't even know about pandas if not for me. He has along history of strep, snoring, little sleep. I am not privy to all the details but I've heard my inlaws talk about those for years. He will be 14 soon. Do I think this is rare? Not on your life! I think the NIMH is sitting on a powder keg.

IMO pandas kids are not minirity, pandas aware doctors are. Perhaps extreme manifestations are rare, but I think that we are living on the cusp of a mental health revolution.

Did your daughter gave any tics, or chorea?

That is fabulous. We are almost 3 weeks post ivig, still waiting for that magical moment! Still wetting bed almost every night. Mood is up and down though- we are having some really good days, but still alot of grumpiness and anxiety. I'm taking the bed wetting as a good sign..at least I know something is happening in there(this something ds would only do right before exacerbation ...and usually only enough to get pajamas wet, now he's soaking everything) Please keep us updated- the fact that you are a few weeks ahead of us and you can see changes keeps me hopeful that our moment is just around the corner!

http://www.latitudes.org/forums/index.php?showtopic=6688 That is a flow chart that can help guide you in diagnosis. It's impossible to give you one list, each child will be different. Since there isn't a pandas test (although I would recommend the cunninhams tests ) it is a diagnosis reached by ruling out everything else. In addition, finding any existing infection that is causing the pandas is important too. A start would be aso, Bnase titers . Strep cultures for the whole family. Immune panel work up- all the basics plus subclasses and pnemoniae titers(but NOT the challenge test if the fail these). CBC, celiacs, allergies.and Lyme. It's more than one trip to the lab...more like 3..or 4, and o would find immunologist to consult with for sure. Even a non believer will order bloodwork for you. Some of the tests may lead to other tests or exclude other tests. So if child has high titers, might not need a Cunningham test. But if you don't find evidence of strep infection, might want to spend the $ on cunninham test, and Lyme. In our case I did 11 vials of blood first time to lab. Ruled out allergies, lead, mercury, mineral deficiencies. Next stop...gastroenterologist, ruled out celiacs and host of other gut related stuff. Next stop, immunologist (gastroenterologist uncovered igg deficiency..which led me there). He uncovered more immune deficiencies. Then we got cunnningam test. Mind you- we found a psychiatrist that dx'd pandas before gastroenterologist-so ds was on antibiotics most of this time. Even without strep "proof". Good luck! I wish I had busters flow chart when I started out...I probably could have avoided some tests. I highly recommend getting pediatrician to prescribe lydocaine before first blood draw. Since kids probably going to be gong back again in near future (our tube has lasted forever). But we didn't have it for the first draw..the 11 tube full allergy panel..and that has caused anxiety over the lab ever since!

I'm not sure it matters. Infection. Strep, Lyme, RF, causing this rouge antibody that wreaks havoc even after the infection has been cleared. I'm assuming that Lyme is same as strep- the conditions exists after the infection is gone. Creating autoimmune condition after an infection. It matters if you think you still have an infection, the c test may lead you to make sure there are no active infections, but that is separate from pandas(or whatever they decide to call it). Infection triggered anti-neuronal response ITAR or disorder..ITAD. I wish they would call it something like that.

I would think that anyone that buys into the theory that anti neuronal antibodies are causing the pandas effect would be running the tests. I think we acn forum folks know it helps, but what would be interesting to see is if correlation between behavioral scores(YBOCS?) and cunninhams test scores. I think we need the c test to have relation to all these studies, so we reach a day when a kid goes int to pediatrician and the ped just checks a box on a lab form to see if kid has pandas (along w/strep,Lyme,and other known causes!) They need to be running IQ test before and after too. One can dream!

Yes, that's probably why I won't get any response to this question unless dr Cunningham has written or talked about it. The antibiotics are cheaper than rhe test, and if kids improve enough that they appear 100 percent, why spend the money.

Yes, that's probably why I won't get any response to this question unless dr Cunningham has written or talked about it. The antibiotics are cheaper than rhe test, and if kids improve enough that they appear 100 percent, why spend the money.

Has anyone done Cunningham tests pre and post antibiotics? This question is for those who have kids in 100 percent remission on antibiotics. If there are any out there that did Cunningham tests. Thet NIMH is doing an ivig study, not an antibiotics study....so I'm wondering if they know something we don't about effectivness of antibiotics. I'm sure they have significant number of pre antibiotics and post antibiotics test results. Antibiotics didn't work for us, they sure helped alot, but even while on them and not in exacerbation ds had camK ii level of 176...hopefully the ivig will work.

I think you should post a question on age and steroid burst. I think I remember dr k saying that not as effective with older kids, I know he didn't have us do one before ivig. It's also a bit if double edged sword, steroids lower your immune response, and make you more vulnerable to infection...we tried one but only got 3 days into it before having to stop because ds caught a cold,, ultimately setting him back further. Ds is 11.

In our case I feel that the azimuth took edge off the disease. So ds would stll get tics just not as bad and exacerbations were shorter. But still ran approx 6 weeks. He was waning when we first tried azith and it just sped up that phase. Didn't cure anything. Also, antibiotics seem to fail with older kids, which was our case. After each virus last winter, his baseline would creep up.

No one could have been more stressed than I was about the whole thing. It's actually relaxiing! A doctor that has seem hundreds of pandas kids is going to tell you what to do. It is a releif. Dr k is quite a character. He will keep you and your child entertained and relaxed. Donna is fabulous too. We got the migrane and vomiting on Sunday after treatment on thurs/Friday. He also had migraine fri nite, but knocked that out immediately with steroids. I thought we were out of the woods since Saturday was great... We are two weeks post. Things good, no miracles yet. Have a good trip and eat some deep dish- connie's is dr k s favorite, we god take out on Thursday from there... Yum.

The pex is immediate, but there is a school of thought that ivig is better long term. There is an old thread called pex vs ivig. I'd want get the infection under control first. Something to ask the doc- if he is in middle of infection and we do the pex isn't he just going to re-expose himself immediately after?