norcalmom

Sometimes, I've dropped a few pills when things are worse and switched something for a couple days to Advil - just like treating a high fever for 48 -72 hours (my son is older so I start him with 2 and follow every 6 hours or so with one (but i don't wake him in the night for it, unless he has insomnia). (Dr T and a number of other folks on the forum do this. I agree the dilated pupils seem to indicate things are not good. Flight or fight syndrome - and to me - that they have some adrenaline or other hormone, opening up their BBB, flooding their brains with all the "bad" antibodies our kids make too much of. (my theory, not researched!) I think quick reduction in inflammation can help a lot. Good luck.

Well, I think anything is possible and you should explore any options that may help your son. Those tests may be born out of the autism world, but does not mean that other kids (and adults) with illnesses, don't have problems with them. They effect many systems. And can cause different symptoms in different kids.My child had/has methylation problems too. They can effect how your immune system deals with infection. I think that many of the items on your list are related - and you may work on one are and find that another area spontaneously improves. You could try both testing through Moleculera Labs to see if he is making antibodies against his neuronal tissues, which is how many of us define the PANS/pandas phenomenon. My son was a ticcer - and this was the test that convinced me that I would not be going down the TS path. Good luck and let us know how he does on whatever treatments you try.

Ditto what S&S said. Even though the anti-neuronals are almost all in range, there are many anti-neuronsl they don't test for specifically, the Cam K II is a measure of any anti-nuronal activity. Anyone know about LOW D1? I think most pandas kids are high in, in one or more of the measures. I wonder why there is even a "low" for the D1 measure - its a measure of antibodies AGAINST a dopamine receptor. I would ask moleculera what a low number in the category could mean. And why they even have a low for it. Our DS was 176 when not in exacerbation, with one high anti - neuronal - anti-lysoganglioside (it was 5x the mean). IVIG was great for him - and Cam K came down to 130 - we measured it 3 months post IVIG,( and all his anti neuronals were in range). Out of curiosity - what are your child's symptoms? OCD or tic, both ?

Thanks for that great info LLM! Im filing it away for when our results come in - send in spit a few days ago!

Did your daughter ever get treated for pneumonia? If she was never treated for pneumonia, than apparently she had it and never got treated for it. It is possible (probable ) that she never got rid of it. IgM is the antibody that reacts at the beginning of the the infection. In some people it will stay high no matter how long they have the infection. When the infection resolves it goes away. But, for many if not most people, it they have the infection for a long time, or if they get infected multiple times, the body does not make IgM anymore. IgG goes up after the initial infection, and can stay raised for years. It means that your body mounted an attack to the infection, and is still spitting out the antibodies to the infection. When it is very very high, some researchers think it means the body keeps pumping it out, but the infection is not going away, so it keeps climbing. The only way to tell if she still has an active infection is to retest, or to do a mycoplasma PCR test (and guess what - neither test is all that great - welcome to my world!). The IGG can fluctuate a bit, and it takes time to see it heading in one direction or another. Your daughters 3.73 is high, but not that high. My son's is 11.50...but he likely had it for a long long time, and it just kept climbing. As far as I know augmentin or ammox. is not the best treatment for mycoplama. It may be somewhat helpful in the beginning, but the myco - if that is what you are dealing with - will likely return after a 2-3 months on it. You should discuss verifying if mycoplasma is what Lattimer suspects the most, or strep. Augmentin is great for strep. If Lattimer highlighted the myco, ask her why, and if you should retest it to see if it is going up or down and when. realize that the Augmenin may make it go down for while, but most likely will not resolve it. Do a little research on the antibiorics for MycoP, and ask her about those and if she thinks they may be better. She may do a combination of them. Doxycycline has been good for my son for this, but he has sun sensitivity during summer has to be off it. All antibiotics come with pros and cons. with doxy, teeth staining - if they still have baby teeth is a risk (I don't know how high that risk is). We did not have teeth issues with it. Its hard on the stomach. DS took Doryx, a time release better for the tummy version, but pricey, version of Doxy. Did you get a vitamin D3 level taken? Welcome to the forum momindc!

I had a bad night last night, riddled with doubt and self-blame, and post traumatic stress. I don't want to rant about it, because we all have those nights, and just knowing that all of you out there have had them and know what I'm going through is comfort enough. Its the stuff that seems to never end that gets to me. The progress is so slow, and it seems so easy to slip backwards. I woke to find this in my inbox- and I know everyone on this board will appreciate the message. We all need to give ourselves permission to put the glass down every now and then. Subject: A Great Lesson on Stress A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile. Answers called out ranged from 8 oz. To 20 oz. She replied , "The absolute weight doesn't matter. It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm. If I hold it for a day, you'll have to call an Ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on." "As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced. So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow. 1 * Accept the fact that some days you're the pigeon, and some days you're the statue! 2 * Always keep your words soft and sweet, just in case you have to eat them. 3 * Always read stuff that will make you look good if you die in the middle of it. 4 * Drive carefully... It's not only cars that can be recalled by their Maker. 5 * If you can't be kind, at least have the decency to be vague. 6 * If you lend someone $20 and never see that person again, it was probably worth it. 7 * It may be that your sole purpose in life is simply to serve as a warning to others. 8 * Never buy a car you can't push. 9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on. 10 * Nobody cares if you can't dance well. Just get up and dance. 11 * Since it's the early worm that gets eaten by the bird, sleep late. 12 * The second mouse gets the cheese. 13 * When everything's coming your way, you're in the wrong lane. 14 * Birthdays are good for you. The more you have, the longer you live. 16 * Some mistakes are too much fun to make only once. 17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box. 18 * A truly happy person is one who can enjoy the scenery on a detour. 19 * Have an awesome day and know that someone has thought about you today. AND MOST IMPORTANTLY 20 *Save the earth..... It's the only planet with chocolate!* I THINK !!!! Today someone asked me if I liked you. I laughed, and I said, "Ha! That's funny!! I absolutely LOVE that woman!! She's funny, caring, crazy as heck, sweet, beautiful, she's reading this email right now & I love her!!" Be the kind of woman that when your feet hit the floor each morning the devil says~~ "Oh Crap, She's up!"

S & S- Just downloaded the book to my kindle! Thank you for the info!

You could try to email the lab with your false negative question. What it is shows is anti-neuronal activity. Indicating if your child is making very high amounts of anitbodies to their own brain. It only tests for 4 of these antibodies, although there are alot more than than. However, it includes an over all activity test called CamKinase II - which shows activity, and has been known to be elevated even when the 4 neuronal aren't (thoritically indicating that an anti-neuronal not in her panel is causing the activity). That doesn't usually happen however. If it comes back negative, you could still have an infection causing the behavior, but it has not caused an autoimmune reaction (at least not the ones this panel of tests identifies). So, you can direct yourself to other solutions, and away from immune modulating treatments (steroids and IVIG). I think we all worry when we send this test in, as well as the strep test. We want them to be positive...but even if its negative, the information gives you a basis for your next step in testing and treatment. Unfortunately for most of us, this is a marathon, not a sprint. So, pace yourself. I did not think my son's would be positive since we took the blood draw for it when things were relatively good. He was not in exacerbation, he was high functioning, just minor OCD no one would notice. It was high positive for CamK, and one of the anti-neuronals. And he had responded well to antibiotics initially but they stopped working for treating his pandas, and the next time he got a cold, all the symptoms came back, and his baseline was worse once the flair passed. It was this test that convinced me to take the very scary step of getting IVIG. Which was tremendously helpful, however I never would have done IVIG without this test. I think in your case, your child is very young, and it would be equally as scary to put her on psych meds and label her bi-polar. So, although the Cunningham test, in and of itself, cannot tell you everything, it can tell you if your child will very likely improve with steroids and or IVIG (vs psych meds and CBT - not that those aren't options and treatments for pandas kids - because they are ). But it will help you prioritize. It may be a bit premature in your learning curve to take this test. I really think its most helpful for those considering IVIG, if the antibiotics don't work, or stop working, and you can't find an infection. Maybe you will uncover an obvious infection and the right antibiotic will take care of it quickly for you, and the pandas symtpoms will resolve along with it. Good luck and let us know if the initial tests turns up any smoking gun.

I do not know. I did have to take my son OFF doxy to give him penicillin for a gum infection a year ago. They are not supposed to be given together. One is for anaerobic microbes, the other aerobic microbes (or something like that) - and they counteract each other. It could have something to do with that.

I just read thru this tread to see if anyone had mentioned the Cunningham test. You can get that test thru moleculera labs. Moleculera.com I think. EAmom mentioned that one. I don't think we can call it officially the pandas test, but it's the closest thing we've got. It will let you knownifnyou child will likely respond to immune mediated treatments, like steroids or ivig. If you child is possible on this test, you know for sure you are dealing with auto-antibodies to brain tissue. You must be overwhelmed by all this advice, and all these tests. Your doc certainly had a long list for your first round of testing! I'm sure that will help you greatly in ruling some conditions and infectious agents out. Id recommend getting a prescription for a tube of lidocaine. Put on your child's arm about 45min prior to blood draw. Tube should last a couple of years, and many,many blood draws. And it can help your child avoid needle phobia...which my son had before we discover this trick...and it was NOT pleasant.

Mine recheck when I ask. They tend to know far less about mycoP than strep or pandas, so you will probably be promoting them for treatment and tests based upon your own research. An LLMD will know much more, as it is a confection common of yme, but u don't need lyme,to have it. A regular,doc will probably only know about typical mycoP- infection of lungs walking pneumonia, nbut won't have any idea what to do about chronic mycoP, without bronchial symptoms. As for how long, there isn't much research on this, Gsrth Nicolson did ,ajoriy of it. Here is excerpt from one of his studies . DS was on and of - but mostly on Doryx for,a year. This is older quote, and he recommend Doxy moe highly. my DS was on azith, and his titter still climbed significantly until,we went on Doxy. ----- The recommended treatments for mycoplasmal blood infections require long-term antibiotic therapy, usually multiple 6-week cycles of doxycycline (200-300 mg/day), ciprofloxacin or Cipro (1,500 mg/day), azithromycin or Zithromax (500 mg/day) or clarithromycin or Biaxin (750-1,000 mg/day).34 Multiple cycles are required, because few patients recover after only a few cycles,26, 27 possibly because of the intracellular locations of mycoplasmas like M. fermentans and M. penetrans, and the slow-growing nature of these microorganisms. For example, 87 GWI patients that tested positive for mycoplasmal infections were treated with antibiotics. All patients relapsed after the first 6-week cycle of therapy, but after up to 6 cycles of therapy 69/87 patients recovered and returned to active duty.26, 27 The clinical responses that are seen are not due to placebo effects, because administration of some antibiotics, such as penicillins, resulted in patients becoming more not less symptomatic, and they are not due to immunosuppressive effects that can occur with some of the recommended antibiotics.

I wish I knew how to get rid of it for sure. An unfortunate thing about the testing- if u use a big lab, and even if u don't, I think they all sent this test out to a handful of speciality labs, and one if them gives you results like yours- a really good IgM and a greater than value for IgG. We were tracking IgG- so doc had to call the lab director to get the actual number, since it only said >5. Since >1.1 is positive, I thought his actual number would be 5.something. It was 11.something. Our usual lab - LabCorp- is the opposite. They give u a detailed IgG, but not IgM. At least, if your IgM is negative, DSs is negative. From what I have read tracking your IgG is the best way to tell if your infection is active. IgM often does not show up in reacted, or chronic infection. Yours appears to still be active, but a falling IgM does not mean u have cleared the myco. DS was on ver high does Doxy for several months, and his IgG was slowly going down. We recently went off all antibiotics, and after 3 months off I had his retested- to see if the IgG was still going down. Unfortunately I had another test to do and only Quest had that test, so I used them and discovered the different reporting format. In addition to giving You the only a > value to go on, Im still trying to find out if I can compare the values to each other for tracking purposes. His last igG Labcorp numbers in march were 2025(or close to that) and the Qurst number taken 3 months layer was 11.45...(had to call for that as I said). But I can tell u that the high dose if Doxy for several months, was slowly Bringing his igG down. He also took a few other antibiotics in there, and some herbals and supplements, but the Doxy was most consistent. Pretty much followed Garth Nicohlsons protocol that you can read about at immed.org.

I've ben tracking my son's IgG for Mycoplasma for over a year. Recently he's been off all antibiotics - for several months - and we tested again. Unfortunately we had to use a different lab than usual. And the results are in a different format. Does anyone know if I can compare them to each other? I'm thinking theoretically I may be able to take the high for each lab and do a ratio - but I'm not 100% sure - because they may be using entirely different methods of testing. LabCorp (his usual lab) Myco P IgG in March result 2405 (indeterminate is 100-320) Quest Test in May result said ">5" with indeterminate range of (.91-1.09) Had to have doctor call to get actual number. You would think that >5 would mean the actual number would be 5.somehting - LOL. It was 11.23 If I use the ratio with the "High Range" number from both tests, then the Quest equivalent for his March Lab Corp number of 2405 would be 8.19...meaning it went WAY up, to 11.23 I was hoping I could just multiply the Quest number by 100 to get equivalent LabCorp number - since Quest has a median of "1" in the indeterminate range. and negative for Lab corp is less than 100... I like that answer a lot better - that would mean his number is 1123 (down from 2405)..It seems like this is probably incorrect, but its the answer I want! The median is actually 210, so it should be 210 times 11.23 = 2358....which is at least close to his old number and seems to make the most sense. Does anyone know if these labs are even using the same test (ELISA? or whatever?) and if there is a conversion I can use? I can't even google it since I don't know the names for these different formats of reporting, or if they are using entirely different testing methods. THANK YOU!!

Maybe a KickStarter video - for establishing a wider reach for funding?

So glad the surgery went well. Thinking of you and wishing your son a speedy recover, and you, some answers from the lab!

Yep. Lots of engineers in our family - both sides.

I also recall her saying, I think one of her old videos that talks about the initial episode being perhaps milder (or less defined) AND PROBABLY MISSED by the parents several weeks after the initial infection. Then the next time the child get sick its closer to the infection, and by the 3rd or 4th infection, the child is reacting immediately with behaviors, rather than lagging behind. And that model follows the same timing as Sydenham Chorea. I think it can depend upon what your child's symptoms are, and how well they are at hiding them. Even in Saving Sammy, Beth writes about some very odd things that happened a few(?) weeks before Sammy got really bad, and she didn't realize just how bad it was unitl they were moving to a new house. My son's "initial onset" was over several weeks, and seemed to resolve, over the summer. But, the NEXT time he got sick - all of his symptoms came on within days And I almost thought he wasn't PANDAS because of this. But now I think maybe, I was just more observant, or he was better at hiding stuff from me, during that very first phase.

I just got the 23 and me kit - haven't even spit yet. I'm not sure if it will be helpful, but from what I saw as the example page of 23 and me results on the site - you don't need any of the information found in it. I just wanted a deeper understanding. It's vocabulary, history of discovery, etc. It is interesting read, to me, but I wouldn't recommend it if you aren't interested in a deeper understanding of the science behind it. It's set up for a student taking a course on genetics- like a study guide. If you are interested in that - its great! I don't have any background in biology, but I can still understand it. I didn't even take it in High School, so it really is written for Dummies!

thanks to both of you for keeping us all up to date! I'm waiting for Drittan Agalliu's reseearch on repeated strep infections and effect on the BBB to come out From his site - "Agalliu D*, Nimmerjahn A*, Arac A, Perrino J, Schnitzer M and Barres BA. Development of reporter mice to image dynamic structural and functional changes in the mammalian blood-brain barrier in health and disease. (Manuscript in preparation)." His site read "in peperation" for months. Wasn't there a doc doing PET scans on pandas kids ? Chugani (or somehting like that). I thought he was doing a study. Cunningham is suppossed to have several papers "soon"..maybe you should leave a "manuscript in process note" in those sections. Below is a review paper and you aren't looking for those- but I like the way it summarizes research in the area - and if you decided to put together something like EAMoms suggestion on the outcomes for each paper - there is a chart in there that might be a good model. Paper itself is good and talks alot about PANDAS (and I like that the researcher in the world of autoimmune world and taking a fair look at pandas and including it in their papers. Paper called Autoimmune Basal Ganglia Disorders http://jcn.sagepub.com/content/27/11/1470.full.pdf+html I wish there were more....

Then I see no reason they would not also tell you the result of the cunninhgham test. Its now a commerically availible test. Tell they you may want to take the test again and would like the information as a baseline. It seems like it might be a matter of getting the right person on the phone...

LLM- Thanks for pointing out the folic acid in cereal - the cereal my son eats most has 50% of recommneded daily dose....so guess he's going to have to find a new one. My DS is also compound heterozygous Nicklemama, we are just beginning, and will be sending in 23 and me kits on monday!

THAT was a GREAT article. Great overview of the theory, the history, the debate. I also learned a couple things. One is that Swedo is doing TWO rounds of IVIG in this study (looks like 8 weeks apart?) And the other - "IVIG is an approved treatment for PANS in Canada". Roadtrip anyone? thanks for posting EAMom!

MAyzoo - this is kinda funny because I'm actually reading "Genetics for Dummies"! So , there is a dummies book for everything (it isn't bad)! I ordered the 23 and me for our whole family (20% off promotion on additional kits - while supplies last folks!). And wanted to get a head start on the genetic vocabulary before I send it in. Off to read LLM's link...DS can't see to tolerate too much methyfolate. He's compound heterozygous ...and I'm still trying to figure this out! I wish I could say, but I'm not sure the methylfolate is making much difference, but then again, I'm not giving him too much at the moment... Its so hard to tell how much to give with pandas kids - the marker for having too much is feeling irritable - he's irritable a lot from just having pandas. I hate to attribute stuff to the methyfolate, but I figure better safe than sorry, so backed off for a while and working on it again.

I can see why Cunningham's lab would be blinded to this info - but SOMEONE at NIH must have this info. Do they tell you the results of other tests, or if you were in placebo group after a certain time? (I'm pretty sure yes?)

PANS/PANDAS is not unlike many (if not most) other autoimmune diseases in that it is believed to be triggered by an infection. MS, RA, Lupus, even NMDAr encephalitis - if you read about them, almost all the literature says they are believed to be triggered by an infection preceding the onset. They don't tend to stay too focued on what kind of infection (and we in the pandas world should move on as well - once we have tested for a number of common infections that can become chronic in our kids of course) Strep is not the cause. It may be the trigger and other infections are as well. The cause is more complex. Cunningham's tests seem to be the thing that can finally identify immunologic aberrations in our kids- proof that immune modulating therapies like Steroids and IVIG are justified in order to treat the disorder. What we don't know is what other disorders or infections - like NMDA and MS, may have high Cam K activity. She has already said that a strep infection - in a healthy, normal individual raises the Cam K, but it does not got very high - but still raises it 10-30% (? can remember exactly) for the period of infection, and then goes down. While there are still questions about testing, Cunningham has thousands of samples. She says that more than 50% of them are not strep related. And although she has not published any papers on her years of research (she has said she has several papers int he works), I don't believe she would open a lab based upon what she knows if her years of research does not support this being a very good screening test for anti-neuronal activity. Test that support the concept that this is disease that involves the immune system, and suffers will most likely benefit from Immune therapies. It may also be of benefit in tracking the disease. I'm waiting my states approval so I can test my some again. He previously had very high numbers, that came down after IVIG. But now, things have changed so much I'm not sure we are still dealing with pans - or if he has learned behaviors or other problems that have resulted from pans for 4 years. I'll get another IVIG if I see his Cam K and antineuronals are high, but if not, we will pursue CBT/exposure therapy.