GraceUnderPressure

No, this can't be a contact dermatitis rash - it has hit all 7 of us and follows the same pattern. It isn't hitting in patches here & there, more like waves spreading outward from the trunk, & there are no blisters though the spots (which start out ~freckle sized rather than pimples like scarlet fever) are very slightly raised. Our symptoms fit rubella the closest: cold symptoms (& the two youngest had brief low grade fevers one evening) and a rash that begins shortly after the cold sx's begin to resolve. The rash begins on the trunk & moves outward toward the head & limbs. The spots (& itching) peak on day 2 and on day 3 the spots that first showed up on day 1 begin to fade. Yesterday was the peak day for me & my rash, & my body felt achy similar to having a flu bug. All of this is consistent with the typical symptoms of rubella, except as I said before, the rash starting on the trunk instead of the neck & head. Not saying that makes it rubella - only that our sx's match it closer than anything else I can find in the Merck manual or on the internet. I am wondering if it's possible that it might be a mutated strain of rubella?

I failed to mention that I also talked to our family dr's office on Monday. My dh had to go in for a blood test & he took our camera with the pictures I had taken of our little ones so they could see how the rash started & then developed. They were surprisingly indifferent. Not sure if the dr. figures it's that unlikely or just thinks it's no big deal. And if that's the case, he may be right - I would have thought if it was rubella, those of us who have been immunized would get it more lightly than those who have not, but it has made no difference whatsoever. (My only child to have a light case is the one whose immune system is usually the most over-reactive, go figure!) I've been trying to find out if there are virus rashes that are not so common but resemble the better known rashes & I've seen some articles that seem to hint that there are, but cannot find anything definite. It does not seem at all consistent with what I'm seeing about scarlet fever - no sandpaper rash, no tiny bumps, no high fevers, scarlet fever usually starts on the face & this started on the trunk. And it is resolving on its own - the rash peaks on about the 2nd day & by the 3rd the spots begin fading. My ds7 who had the first spots show up last Friday has just faint pink traces of them left now. This is very perplexing...

Thank you, Kim, and everyone else who posted! I finally sent an email to Kathy last night (as you can see from my other post "Rubella?" we've been pretty occupied) and she emailed me right away this am. She verified what you all are telling me - my ds's CAM of 146 is just under the median range & his da 1 is twice the normal mean. She said that would indicate PANDAS/PITAND providing the clinical picture is consistent with that. Dr. Cunningham's "assays are not diagnostic ( we are working on that.. but its a long road) and the most important diagnostic tool is how [ds18] presents clinically." Interestingly, apparently in response to my having told her that viruses seemed to be our trigger rather than strep, she also said "our research is showing that it is not only strep that will increase the titers on the assays we run.. lyme, virus, myco.. all those are also showing to have an affect on the results". Which would seem to resolve the questions on this forum about these tests from a week or two ago?

Our family had cold-like symptoms about a week & a half ago. Friday night my two littlest ones broke out in a speckled sort of rash. By Saturday morning, my two oldest boys had it. By Sunday night my DH & I had developed it. My daughter just began hers Tuesday morning. Poring over the internet descriptions & pictures, this fits the description for rubella closer than anything else except that it has been starting on our trunks & radiating outward rather than the usual starting from the head & working down to the toes. Also, 5 of the 7 of us have been immunized for rubella, plus, my ds18 just had his rubella titers checked a few months ago & they were higher than the highest end of the lab range - and he seems to be having it worse than any of us (and he's usually the one who doesn't get symptoms when we have a virus going around, other than increased tics). But I can't find anything else that fits our symptoms & rash so closely as rubella does. Poor ds18 has been doing very little more than laying on the floor of his room wrapped in a sheet for the past 2 days. The itching was so bad that it was interfering with his tics and he finally gave up trying to move outside of his room. Today, the itching is finally starting to subside somewhat (the spots became so many that they have blended together & he looks sunburned), but now his tics are really going crazy. I've been giving him 50mg of benadryl about every 4 to 6 hrs since Saturday night. Tried calling our dr in Dallas on Mon., but his nurse almost never returns my calls for who knows what reason. I thought this time might be different since we were there just last Thursday so we have exposed their office staff to this virus which I pointed out in my message, but nope, still no call back. (I tried asking her about it at our appt & she deflected my question rather than answering it) I'm hoping the increase is just a rebound effect from having something interfering with his tics for so long, but I am worried. Last night, ds18 declined to eat rather than hassle with trying to come to the table (from a boy who is perpetually hungry that says a lot). Tonite, my DH called him down to dinner at 6pm and he did not make it to the kitchen table until after 11pm. (I considered bringing it to him, but his tics are so bad that he is a very messy eater & everything is carpeted. He has been eating nuts up there though so he's not starving completely) Does anyone have any suggestions on what I can do or might try to help him?

Thank you so much! I got the pm info as well! I thought you might also be the one who had posted about Cunningham's explanation of "normal mean" - was I mistaken?

This is so confusing! According to the positive & negative controls and the ranges provided by Dr. Cunningham's lab, my ds's numbers are at the middle to high ends of normal. Does this just mean our results are inconclusive one way or the other then? How do I contact Kathy Alvarez or Dr. Cunningham?

(Is it even necessary for me to say how terribly frustrated we are over here? Or is that redundant for those of us who frequent this forum? ) Anyway, ds18's Cunningham results appear to be negative? His CAM Kinase was 146 Anti-lyso 160 Anti-tubulin 500 Anti-da 1 2000 Anti-da 2 4000 I am SO sure that my son's tics are related to a dysfunction of his immune system because of his issues & the things that cause him to get worse, etc - so do these results mean it is not? And I thought someone posted recently about using the "normal mean" to interpret the results? But I keep searching for that thread & can't find it. Can't find previous posts explaining how to interpret the numbers either. ARGH!!! Can someone here help me with some info or point me to the right place that I'm apparently too brain damaged to find today, please? ~Grace

Linda, I talked to Dr. Infante by email back in Oct, & he was very nice, but he is new to this & only seems to "get" straight-forward obvious strep PANDAS not anything more complicated. My ds seems to be a PITAND. If he has strep it is hidden. He doesn't have any of the typical lyme symptoms either & all of the other Igenex tests were negative (we got a panel done, but somehow lyme got left off of it), so I'm doubtful but we're just trying to cover all the possibilities we can. By Georgetown, do you mean in DC? We are near Houston, TX & that long a distance is just not tenable right now. There's a plasmapheresis unit at Methodist Hospital here at the Houston Medical Center, but I don't know how difficult it would be to get them to agree to treatment. I would've thought all they needed was a dr willing to prescribe it & an insurance co willing to pay? ~Grace

Thanks everyone! Michael, I saw your earlier post of several months ago about lomatium - did you have good results with it? So far we have tried ashwagandha, astralagus, elderberry, monolaurin & andrographis. As near as I can tell, the monolaurin & the andrographis seem to be having beneficial effects. After I ran out of them, ds seemed okay for a day or so & then he & we all started to feel like we were getting sick again. The herbalist who recommends lomatium said that it was best given with other supportive herbs like ashwagandha & astragalus so I went ahead & got some more of everything & we're going to try them all as of today! ~Grace

My ds18 is doing very badly these last few days. We are going to Dallas to see his dr on Thursday. Originally I had planned to get the Igenex lyme test done when we get there, but we started on the herb lomatium dissectum yesterday because ds's issues seem to be viral & we need to do something for him ASAP!!! My understanding is that lomatium, besides being anti-viral, also has anti-bacterial & anti-fungal properties but that they have not been explored by re$earchers yet. So I'm thinking we should probably not risk wasting money on the lyme test since we won't know if the lomatium affects the results or not. Because my ds is doing so poorly, I intend to try for a referral for PEX, but this dr only does IVIG so I'm pretty sure the dr will want to try that instead (though I'm worried sick that ds doesn't have any room for the possibility of getting worse to get better). Doesn't getting IVIG interfere with lyme test results? So if we end up going the IVIG route (we are desperate at this point), would it make sense to wait & see how well it helps & only do the Igenex lyme if things don't improve? Any & all opinions, please?

I have been meaning to ask - can CBT/ERP help with Tourette's type of OCD? My ds18 does not have obvious anxieties. The OCD aspect of his condition is that if he passes a certain place or object or hears a certain sound or whatever, a tic (or actually, usually a series) is triggered. He has been very gradually worsening over the years since the age of 4, but has never really gotten better. I describe it as instead of waxing & waning, he waxes & maintains. This past year for some reason the pace of his decline has really picked up. He started another exacerbation a couple of days ago and we are at the point where they seem to be coming out of nowhere. My limited understanding from what I have read about it was that as long as the tics are worsening, ERP can't help? I guess if they can't tell what's triggering their tics that would make sense. He goes to great lengths to avoid his triggers, but from what he tells me about them, I suspect anyone would. When he does not do a tic, he says that it creates a sensation in his brain that is almost painful. And it always causes him to be worse tic-wise as much as days afterward, depending how strong & how much the tics were that he bypassed. So am I right in thinking that this probably would not be of help to him right now? (We have an appt with our dr in Dallas this Thursday & I am going to ask for plasmapheresis at this point - ds is so close to incapacitated now that the "turning back the pages" aspect of trying IVIG frightens me - don't expect it to do any good as this dr only does IVIG, but I am going to beg for some kind of referral or something anyway. Maybe I'll just plant myself in the office & cry till they call the cops to haul me away )

Thank you for clarifying, fr88! Sorry to be so touchy. We're having a rocky time over here with my ds18 & having difficulty finding help for him. This condition sucks...

eljomom, I'm certainly no expert & don't pretend to be, but it appears from the literature I have read that Dr. Cunningham was looking for markers that become increased when strep is involved, BUT these markers are not exclusive to strep and can be elevated by other bugs that are capable of neurololical impacts.

Some of us have neither of those luxuries. Additionally, the PANDAS dr's are all giving it their best guess, too - a better educated guess than most everyone else, but a guess nevertheless & some here have valuable experience based on the failures of the PANDAS experts. I am very happy for you to have a child so long in remission, but there's a lot of suffering people here with kids whose cases are more complex than straight-forward PANDAS (if there is such a thing) & your words seem surprisingly antagonistic from this side of the screen. Why post here at all if that's your attitude? Life's difficult enough already...

Isn't is amusing how when these little conflicts erupt, everyone has to post their .02 about it? So here's mine! And I'll let you all have it for free since it's Christmas! I fervently hope that everyone will keep posting ANY info that they think might be helpful (and positive stories are DEFINITELY helpful - have you noticed how many times people have posted that they don't come here often because it's so scary & depressing? I'll admit that I have felt jealous a time or two, but those stories still give me hope) These are all so many pieces of the puzzle that we are all desperately trying to put together to save our kids. Lyme testing IS very expensive & most of us are struggling to afford the PANDAS investigation already. And I too have looked at the false pos/false neg stuff on lyme and wondered from that what the point there is in forking out all the money for testing then? Would it be cheaper just to try some of the lyme treatments to see whether or not they help? Additionally, I just started us on some natural anti-virals for this stupid respiratory bug we have not been able to shake for months now & couldn't help but notice that several of these supplements are used for lyme treatment as well. Certainly opens the door to some other hypotheses about why lyme treatments might help someone who tested neg for it. ABX are not single species specific either. Though I come here for info to help my ds18, my ds13 is on the ASD spectrum. I spent years on different autism forums trying to learn what I could. If ever there were an example of "To a hammer, everything looks like a nail", parents who have found help for their kids are it! There is a well known mom in the autism community who has successfully treated her children with supplements to whom virtually EVERY symptom is yeast. While I know yeast is ubiquitous, and goodness knows that we have had our rounds with it umpteen bazillion times, I just can't believe that it is quite the boogeyman she makes it out to be! Still, as I told my dh, if the treatments help, that's far more important than if the explanation for WHY they help is accurate. I think we would all be well-served if we tried to avoid sharing our opinions & experiences with definitive statements. Better to keep with the "it could be...", "this is what worked for me when that didn't", "you might try...", "you might consider...", type wording. We should recognize the huge margin for error in all this even amongst the experts & try to keep our help humble - IMHO. Meanwhile, may I wish you all a Merry Christmas with a little holiday cheer? http://www.youtube.com/watch?v=XDOO3FvGsZ4&list=SL With love & prayers to all of my fellow PANDAS/PITANDS parents & their families, Grace

Okay, I'm looking at ILADS guidelines & it seems to be saying that IgG & IgM Western Blot are sufficient for initial testing. We did the co-infections panel about 2 mos. ago & at the followup, when the dr realized that lyme had been left off, we were told that they could use the blood sample from the previous panel. If they should say at this point that they can still use it, should we have them run the lyme test on the old sample or go ahead & do a new blood draw?

We want to rule out Lyme before we do IVIG or PEX - which one of Igenex's offerings should we ask for? I think they have IgG, IgM & PCR-DNA or something like that but don't have the order form in front of me (We've already done a panel for all the other stuff like bartonella & babesia, but somehow Lyme got left off)

Since my ds18 has had sx's onset around age 4 and steadily worsening over the years, doesn't that mean that plasmapheresis is a better option for him than IVIG? Is pex as expensive as IVIG? Are the risks & followup sx's pretty much the same? Is there a dr in TX who does pex? (We are near Houston; we have been using Dr. Rao in Dallas)

I mentioned not long ago that my ds18 w/OCD triggered tics has gotten so badly messed up since we recently had a bug go thru the house again that he has been struggling to make it to the bathroom in time & has had several accidents on the carpet - with stains that we have not been able to get all the way out. Needless to say, at his age, this is beyond humiliating for him. I discovered that he has been dealing with it by secretly relieving himself on paper towels & then throwing the stuff in the trash (because the smell was unmistakable). I didn't want to embarrass him further but at the same time there's no way it could continue on as it was because we can't live with the house smelling like that. Then, to make things even more exciting, I have now twice found a wadded up papertowel with poop in it left lying in places around the house where such things have no business being. I had to confront him. The first time he said he set it down because a series of tics hit him before he could throw it away & then he forgot about it (actually by the time the tics ended, he "remembered" that he had already taken care of it). The second time is more scary - he doesn't even remember setting it down. He's really upset as this just further adds to his embarrassment which means that his tics are really going now. (We are still fighting the bug and ds is in an exacerbation - the dr thinks it's a virus. We just seem to keep re-circulating it amongst ourselves & can't get rid of it. I've added elderberry to our OLE & extra C with no luck) Some of you mentioned last time that you were dealing with similar issues with kids whose OCD prevents them from using the toilet so I am desperately hoping that someone here can give me some suggestions for helping him deal with his difficulty in a way that doesn't keep risking our health here...

I know that acetyl carnitine is one of the main supps for mitochondrial support. Are CoQ10 & antioxidants directly supportive of mitochondria? Are there any other supps that are directly supportive? And I have some vague memory that has me thinking - aren't pyruvate issues associated with B-6 deficiencies?

What irks me in all this (okay, well one thing of many) is these attitudes of 'It can't be lyme because it doesn't happen here' and 'It can't be flu because we haven't been seeing any flu yet this year'. Why doesn't the possibility occur to these geniuses that they might be seeing a patient who is on the forefront of an increase or outbreak in lyme or the beginning of the season's flu wave? These things have a beginning SOMEWHERE so why do they not even consider the possibility that it might be the person they are seeing? Many years ago when I was doing a pharmacy internship at the VA Hospital, there was a patient who was having malaria type symptoms & the attending physician was discussing it with his residents & med students & they decided that it couldn't be malaria for several reasons derived from the man's bio & therefore he must have a drinking problem. I remember thinking to myself "That's not right" - but I was a lowly pharmacy student and less than the dirt beneath their fingernails. Sure, they might have been right, but they made some pretty major assumptions and then acted on them as if they were fact. That really unnerved me. Now, decades later, I feel like we are on the receiving end of that health"care" paradigm.

Just trying to figure out all the possibilities we need to rule out for my ds18's issues. Saw viruses mentioned elsewhere here as a possible PITANDS trigger - sure would seem to be a good possibility in our case. What labs do they check? How do they go about diagnosing that? And what treatments do they give since abx wouldn't work? IVIG or antivirals or what?

Oh! So Dr. K was saying that he is concerned about, & trying to avoid, the development of resistant bugs in our kids? That makes more sense to me now...

Okay, I desperately need experienced opinions! Our situation with ds 18 (OCD-based Tourette's) has hit a new low. I discovered that he has begun dealing with the huge number of tics he has to go thru to get to the bathroom (& all too frequently not making it in time) by avoiding the bathroom & using paper towels & throwing his waste in the regular trash. Needless to say, the smell gave it away. I am so heart broken to see my firstborn driven to this level of desperation - we have to do something for him!!! We have tested for strep & ASO - negative. Myco p - ambiguous (IgG almost positive level). Cam k - 146 (don't have the rest of the Cunningham test results yet) Igenex full panel (minus lyme because of snafu) - all negative. Dr. started ds18 on zoloft to get his serotonin level up. It did seem to get rid of a lot of the minor tics & reduce his sound sensitivity. Also seemed to possibly make his major ones a little more intense. At our next followup, dr. had us start him on doxycycline (inflammation dose & I think to cover the possibility of myco p), been on it for about 2 - 3 wks but I keep forgetting to give it to him (has to be at lunch away from his other supplements & we're frequently on the go during that time) so it's not been at all consistent. Weird thing is that we picked up a flu-like virus just before we started the doxy. Viruses have always made ds18's tics worse and this was no exception. But ds18 has never really waxed & waned with these things. It has always been more like wax & wax! But this time he actually did return back to the level he was at before (which is still really bad but at least not as bad as when the bug was going thru our family). What to credit? The zoloft he's been taking for ~4-6 wks or the inconsistent doxycycline or something else? Dr. checked his vax titers & all the MMR ones were fairly high, IIRC, though only the rubella came close to being 4x the high value which was the point at which the dr said it would be of concern (But we were only a few points short?) Said he did not think ds18 was a "viral kid"(?) His dopamine & adrenalin hormones are too high; his serotonin & gaba are too low. He also has hypo-cholesterol (I think from digestive issues - his gut doesn't break down & use protein well either) He's been having a little bit of D & I don't know if I should blame the bug we've been fighting or the doxycycline (worried about clostridia - his probiotics have been inconsistent too - his tics have made giving him supplements a mega challenge) I'm at the point that I am wanting to try IVIG to see if it will help while agonizing at the price tag, as well as the potential risks, for a "let's see if this works" effort. I am considering setting up an appt for the IVIG just before Christmas (because of the break in our homeschool activities to allow him some recovery time & minimize what he might miss) Is this a good idea or bad? Please share with me any & all info that you think might help us in our decision & how we should do this to optimize our outcome! Such as - should we avoid anything that might irritate or set off his immune system for a particular length of time? etc.

True - I just don't remember my password. (That's ok - I wrote it down on a piece of paper - somewhere ) May just have to call, BUT I'm going to get off my posterior and go see what I can find. Greatly appreciate the info! It is encouraging!