thenmama

Oops, double post. Internet hiccuping here this am. Sorry!

We got dd's (age 13) lab results yesterday (she's been flaring). The labs were run by labcorp, but the anti-dnaseB values are reported with different values than we've gotten in the past. We used to get what looks like a ratio, with dd's always negative at <1:60. Her titer tests have always been negative despite culture confirmed cases of strep (with negative cultures in between and w/ an immune response each time--PANDAS-- so we know she's not a "carrier"). This time her lab results for the ASO was at its usual (barely detected at 7 ish), but her anti-DnaseB values were reported differently and her results were 112 (still within normal, I think the range was 0-170-- I don't have a copy yet, ped called me last night to give me results). I know these are still normal and low relative to other kids with PANDAS, but I'm curious that anything at all registered and am trying to figure things out. Here are my questions for the wise hive: Does anyone know how the values we got translate to the ratios we've gotten in the past? In other words, would this value, 112, be about the same as what she had last test-- which was neg/ <1:60? Would being on antibiotics affect the results? She's on a treatment dose of Augmentin XR (ongoing) and had been on Bactrim for 3-4 days prior to the draw. Would having an immunodeficiency affect the results of these particular tests? She's low in IgG, IgM, IgA. Her IgE was normal this time (used to be a bit high). We've thought we've noticed strep breath over the past few months, but cultures were all neg. In the past we've had mixed results with her swab/culture results when she's said she feels "streppy." The only tests that came back out of range this time were her lymphs (elevated, but I don't have value--ped felt consistent with acute illness) and her low immunoglobulins. I know the titers aren't always accurate-- we've never put much stock in them. Just trying not to leave any stone unturned b/c we can use all the clues we can get. Thanks, all!

I took Rifampin myself once-- and apparently it can also tint sweat. I didn't go all Oompa Loompa or anything, but did learn it can cause discoloration similar to the tears and urine. Another one of those things it's best to know about in advance b/c it might otherwise cause a bit of panic!

My kiddos have done the Clinda/Rifampin combo. I don't think we've had a pos. strep since they both did it.

We really need a diagnostic code for PANDAS, so the "controversy" over its existence isn't used as cause to deny treatment. My approach with insurance is: "We didn't request an evaluation of the medical condition, we requested coverage for a treatment based on medical diagnostic codes relevant to our child's condition and current health status. The article you've produced has been discredited, it is only one article, where many more provide evidence for both the condition and its treatment. I'm sure you also are aware that the condition is recognized by the NIH, and its standard of care treatments are listed on the NIMH Pediatric Division's PANDAS website. It seems appropriate to remind you that you're not our child's physician, nor are you an expert in this condition or a relevant field. Your opinion about the condition's existence and our child's medical diagnosis is unqualified, unwarranted, and irrelevant in this case, where you are merely a claims adjudicator. So, as for the benefits request, let's get back to determining whether or not the treatment should be covered for the diagnostic code it was requested for, according to the specific terms of our health plan, and in a manner compliant with X (fed or state) regulations for claims and appeals and consistent with our member rights to a full and fair review under (PPACA/ERISA/XXX), now shall we?" Make them stick exactly to the letter of the plan, their own established coverage guidelines, and state or federal law. This is how it is supposed to work: insurer or TPA gets pre-auth request; looks at case/medical need and evaluates coverage request against plan terms and coverage guidelines to determine if plan can cover the requested treatment; issues decision according to how it stacks up against plan provisions. It should basically be a checklist sort of exercise based on the plan documents and its relevant established policies and guidelines. But, insurers never reference their own guidelines or attempt to determine whether a treatment meets coverage criteria per the actual plan. Denials are systematic and the plan instruments are all a facade--never really implemented. They just throw out whatever as a rationale, figuring it'll stick. Hold them accountable--make them play exactly by the book. The condition's existence isn't up for debate in a claims review. Period. Sorry that happened to your family, T.Mom.

No problem. But keep in mind-- much of the change over the past couple of years has been for the better. Other insurers' policies don't really have any weight in terms of making a good case for coverage, so if something was going to change, that's the one thing it's easiest to work around (but, outside of making our insurance cases it's awful for our community that other insurers have regressed and denied coverage for a treatment they clearly know is appropriate for our kids' condition). It only shows that other insurers realized they could get away with not paying. Everyone knows the insurance pros that make coverage guidelines aren't really experts (they're businessmen with medical degrees) and don't have the professional cred of the specialists and researchers in the field. Insurers would never include other insurers' policies in their criteria for proving something is not experimental/investigational. Since the time I wrote the appeal info you have, the NIMH's position has strengthened in its support for the treatment and I would put heavy emphasis on that. Use the NIMH web page (cite the link AND print and submit a copy with your appeal). Show how your child meets the conditions for IVIG in the NIMH's statement (meaning prove in your appeal that the treatment is warranted according to the NIMH criteria-- include what's been done in the process of dx'ing your child to determine it's PANDAS, not non-PANDAS OCD/tics, and any relevant info to support that. If your child has had IVIG before and it's worked-- get statements from doc to support that b/c NIMH specifically includes the info from the study showing it was not effective. for non-PANDAS/PANS children). The White Paper was also released and if there is anything relevant to your child's case, you can reference it. Also, I believe IOCDF may have some newer info and it's worth looking at that to see if it's worth including. Also-- you really need to go point by point through your policy's specific coverage guidelines for IVIG and its Experimental Investigative criteria (do you have that? if not, get it asap). I can answer specific questions if you have any. Or, if you find links to your policy's info online, I could take a look for you. Gotta run now-- but lmk if you need anything.

The policies of those insurers covered immunomodulatory therapies for PANDAS at the time I wrote that (UHC and HP were covering IVIG and Cigna was covering PEX-- the point being all three were covering one of the two immunomod treatments proven effective in the first study). I know some have changed policies since (which really ought to be illegal since it's not like new evidence has come out against it!). Canada covers it (theoretically-- and the policy works for your appeal, unfortunately I've seen a number of Canadians who were having trouble finding the docs to treat PANDAS, which effectively renders covered treatments inaccessible). I'd rely most heavily on the NIMH's website statement about the treatments for PANDAS now. Also, have your doc make a case that it's considered "standard of care" and try to get some other PANDAS/treating docs/peds to sign a letter to that effect to include with your appeal. Also, learn the laws for claims/appeals and your policy's specific medical policies, claims/appeals procedures, coverage guidelines, E/I criteria, etc. Then, go through the case records (get from insurer if you haven't already) and determine if the insurer adhered to the policy, gave the claim a "full and fair review" and did everything they were supposed to do and nothing they weren't supposed to do. If the coverage guideline says articles in peer reviewed lit are necessary to not be considered E/I-- look in the record to see if the insurer ever consulted any (Anthem never follows our plan terms, never consult anything but the 3 compendia sitting on their desks-- when they even bother to do that). I just got the message you left for me about this and I'll reply to you shortly (just have to get the kiddos going on the day)

My dd also felt terrible the next day when she was taking Melatonin and we had to stop it. Her insomnia was similar to your dd's--it took forever to fall asleep. My ds has had this to some extent, too. Unfortunately, we never really figured out what caused dd's-- but it went away with all of her other PANDAS stuff, so I always assumed it was part of the cluster. I think she occasionally reports having nights that she can't sleep as easily-- but she's 13 and usually she's been up reading, listening to music, doing stuff so it seems more of a typical teen thing because once she winds down and gets into bed she usually can sleep. When she was younger (including when she was your dd's age), it was a different beast-- much more like what you describe. Actually, one thought that just occurred to me--we went through a significant insomnia stretch around that age, and not always in PANDAS flares if I recall correctly. And it's around that age that the first early/pre-puberty stage hormonal shifts begin--and it was when we noticed that. Insomnia is definitely related to hormonal changes later in life. No idea if there could be a connection- but since it just hit me thought I'd mention it. Some stuff from our experience, in case it's useful: One thing I remember is that dd seemed to have built up worry about not being able to fall asleep that struck me as not quite the same as her PANDAS OCD worries-- but that would start creeping up in the after dinner hours and leading up to bedtime. We used the same ERP/CBT approaches for those, even though it felt slightly different to us both. It seemed more like a worry b/c the insomnia was upsetting to her, making her feel tired/lousy. But, worrying about it was only making it worse--possibly even perpetuating it after the initial cause had waned-- so we worked on eliminating that pattern the same way we'd address any other worry thought/ritual. A few other things that were sometimes helpful: Exercise and plenty of outdoors can't hurt. But my dd was super active so enough exercise to exhaust her at that age would've been like an extreme sport so even though it seems common sense and standard advice-- wasn't a reliable remedy. Still, I think it helped sometimes. The combination seemed important--not just activity, but outdoors/fresh air, too. Swimming in summer. Hiking. Biking. Days at the park. Routine. Experiment and find something that seems to work- both of mine were different. One liked bedtime baths, it was too stimulating for the other so am bathing was better for sleep. One likes music, the other silence. Reading together. I used to do gentle calming yoga and/or meditation with them, paired with a peaceful story or poem. Along with that, relaxation exercises-- focusing on breathing, contracting and relaxing muscles, visualization-- whatever works. One found more sensory input calming at bedtime. Deep pressure. Heavier blankets. Ds likes gentle touch--fingers run lightly down his back while I sing to him. He also likes falling asleep to classical music. One tip: I tried to never let the routine become ritual b/c of the pitfalls in that w/ the OCD. So I'd find some things that worked and either use them like swappable components--different parts different nights and no seeming rhyme or reason to which one we did when or what things went together-- or would change things up regularly enough that one way of doing it didn't have time to become "the" way. Swapping off and on with my partner helps, too. I tried to create enough regularity to provide comfort without enough predictability for ritualization/dependence. And the counter to that, I found a significant deviation from routine has also really helped the insomnia at other times. Sleeping in another bed, at someone else's house, a downstairs "campout" in a pup tent on the living room floor-- something novel that breaks the established patterns/rituals that the insomnia is attached to. I think I stumbled onto that accidentally while traveling once, then began to use it intentionally when we got into insomnia ruts. Anyway, just some of our trial and error over here. Good luck!

Wow-- great that you got in the study and great that they're seeing such success! Just wanted to let you know that both of my kiddos have had IVIG and with both kids we experienced an "it gets worse before it gets better" response in the several weeks following the treatment. I believe there've been some who've seen more immediate positive response, but it is very common for it to take a while to see the improvement (give it a month). It's also common to see some increase in symptoms or flare up of issues for a period following the treatment. IVIG helped both of my kids. My son was complicated and he got sick again not long afterward and we've had some backsliding, so we have more work to do for him. He may need it again now that his tonsils and adenoids were removed and/or we may need to look further at what's causing him the recurrences, and whether it's all PANDAS or something else is in play. But, even with all of that, after the initial flaring up/out of whack stage calmed, we saw definite, marked gains (and others noticed a difference, even those who didn't know he'd had a treatment). My dd had PANDAS that went undiagnosed and untreated for many years so by time we found out it was PANDAS, she was so sick and debilitated by it she wasn't functioning in normal daily life. Now, post-IVIG, she's a thriving, happy kid able to live her life again. She's only had IVIG once so far, and has been on treatment dose Augmentin, and other meds only if/as needed. Good luck to you!

I'm confused by this, too. My dd also had very, very high anti-D1. Her anti-D2 was within range. Her camK was 187. She had severe OCD AND significant tics/choreiform-movement issues. She was textbook PANDAS presentation, and standard treatments--IVIG, abx, steroids while symptomatic, have brought her back. Wondering, and EAMom hoping maybe you know, if immune deficiencies/low overall immunoglobulins would affect results? Would the levels for someone whose body doesn't produce enough IgG in general be a reliable indicator of elevated or normal levels on a test like this? I don't know enough of the science behind this test to know if that would make a difference. But if it does, I wonder if there've been any studies to determine if SC patients show a similar trend toward low normal to low immunoglobulins as it seems to be fairly common with PANDAS. Also, I wonder if they measured subjects quantitative immunoglobulins, b/c it seems important if that would affect the results. And if it does, and there is a different pattern of quantitative IgG levels between SC and PANDAS patients, wouldn't that impact the interpretation of results? If that info is unknown, seems like some follow-up would be necessary, and might yield more info or clues about what this all means. Will be interested to see what else comes up about this, especially given my dd's somewhat illogical results.

Both of mine do/did and I remember a number of other parents had reported the same thing when I first noticed it with my oldest child.

And try this article on Cunningham's work. Good luck!

"Trial and error" is the only proven approach to PANDAS so far It is so hard to figure out, and there are so many complicating factors I'm not sure how you'd figure it out with any certainty-- was it the s. therm, casein, allergy/sensitivity, digestive issues, fungus/molds, etc. So trial and error and doing what works is the best way to approach it. That's what we do, too. Oh- and I just pointed that out about the article b/c it's good to remember researcher bias, and to make other readers who may not be familiar with Klaire Labs aware of that possibility. One thing I appreciate about all articles, though--even if I don't entirely trust their objectivity-- are their citations. It's a great way to find more research and info! Glad you've found some things that are helping your son!

Chrissy, just so you're aware-- the article you found is from a company that makes/sells products containing s. thermophilus (Klaire Labs/ProThera), so it may not be the most objective source of information. It seems like not all kids with PANDAS react to s. thermophilus, but it appears some do--at least anecdotally. At this point, much of what we have to go on for our PANDAS kids is based on anecdotal info/evidence and I think many of these issues are not settled or well understood (scientifically)--so we parents have to just pay attention, try what makes sense for our families, go with what works for us, and participate in the larger dialogue about PANDAS to help one another and hopefully lead to more research and evidence-based approaches and therapies. All to say-- the verdict is probably still out about s. thermophilus and it's probably not as simple as whether it is good/bad or safe/unsafe for all kids with PANDAS (no other treatment has been that clearcut for all PANDAS kids at this point, even those that have widely demonstrated benefit or have good evidence to support use for PANDAS).

I only have a sec to reply but I'm sure others will chime in to give you more detailed info. It'd be an antifungal, not an antibiotic. I'm guessing Diflucan or something along those lines. There are others on the forum who know A LOT more about this than I do and have a whole list of things you can try... there are treatments they use in the nasal passages, etc. I think. Good luck!

Hi all, Wondering if anyone's ever seen intermittent/recurrent swelling of the cheek, possibly parotid gland, in their child. Ds has periods where his speech becomes more physically difficult, like it's somehow obstructed and/or there's an excess of saliva or he's not clearing it out. There's always some degree of physical speech issues present and we're looking at that, too. But, he started a major PANDAS symptom spike this weekend, seemed under the weather but never developed other symptoms, then last night I noticed his speech clarity worsening and one cheek was markedly puffy. He also complained that "the bumps" were back- and by this he means some sort of bump on the inside of the cheek inside the mouth (not visible like a sore- thinking maybe gland?). We've had these issues before (always with flares) and prior to PANDAS did a few rounds of allergy testing when we thought his complaints about his mouth were possibly some sort of allergic reaction (never tracked a common trigger and tests negative). So, this seems to be a recurrent issue, not an isolated incident. I thought he was improving yesterday so didn't bring him in b/c flu is so rampant, but then this started last night. Our ped is out today so I booked first thing tomorrow morning. He doesn't look as swollen this morning and isn't acting sick so I'd rather wait to see his primary to look at and address the big picture. FWIW, he also has pretty big tonsils and that's on our list of things to eval/address. Any ideas or clues? Anyone else experienced something like this? TIA!

to make that happen we'd probably need to hit AAP where it might actually register- reputation/PR. some publicity about how behind the times it is, and how being so out of date/out of touch with pediatric conditions and practice is harmful to pediatric patients-- children--would be a good start... edited to say: AAP's resistance/failure to get with the program is surely political-- and probably has more to do with some internal players or allegiances than it does PANDAS/pediatrics. Because of that, what's right or what it ought to do re: PANDAS doesn't matter and asking/expecting that isn't going to change anything. But, there's nothing like a PR nightmare to shake things up and break up allegiances. Think of any major org that's come under scrutiny due to scandal/bad PR in recent years--there's always insider fallouts, scapegoating, backtracking, etc. to calm the storm. If we want to get anywhere with AAP- we need to create that storm re: PANDAS to force those behind the scenes at AAP to choose between their players/allegiances or the org's reputation, etc. JMO

Thanks for posting, LLM! I had no idea this could be an issue, and we're grapefruit lovers. Especially dd. Fortunately our meds aren't on the list, and now I will be checking whenever we get a new Rx. I saw that solumedrol (methylpred) and erythromycin are on the list, as well as some CNS drugs, so this may be very important info for some of our PANDAS families.

Thanks for the suggestions, Mayzoo!

Thanks for the reply! re: Omnicef, I don't know if that's the consensus everywhere-- just what I'd heard. I think our peds practice has had a lot of failures with it for ears/sinus so their opinion has been changing about its effectiveness for that. It very well could be specific to our town/region. If I recall correctly, I think there's also a theory about how s. pneumo vax and other factors in ped infectious illness and standards of care are contributing to changes in infectious illness and kids' bacterial environments and thus creating a shift in the more typical antigens for these infections-- but that's something I remember hearing but not enough about to speculate on (or articulate clearly, I'm sure...) Cheers:)

Some of you may recall a recent post about a pattern I thought I was seeing around the timing of ds's abx doses and his daily anxiety/ocd/behavioral symptom spikes. Well, odd as it sounds, it seems there may have been something to that-- we've experimented every which way and it is very clear that something about Clindamycin is actually causing him problems-- either as a side effect in its own right, or how it affects his PANDAS. So, our ped is going to change his abx-- the question is: to what? We live in central VA and the strep around here is pretty resistant (or evasive) to amox/augmentin. Dd is on it, has had multiple breakthrough strep infections, and we've done the whole Clinda/Rifampin clear her and the possible carriers in the home thing. He was on Clinda b/c he'd had perianal strep even on Augmentin. But, that was a while ago, he's had the multi-abx combos and IVIG since, and has done courses of other abx, like Omnicef and Bactrim for other things, without return of the perianal rash. The ped said Azith isn't viewed as very good for much except MycoP in this region (I've heard this elsewhere, too). That would leave Omnicef. The ped is not keen on it for ear and sinus issues anymore b/c of its poor success rate. Apparently it still seems to work pretty well for strep around here. But, he's having bad days right now, either b/c we're in the sawtooth or b/c reducing the clinda, or b/c of some other unknown (our specialty is the "some other unkowns") and the only sign of anything physical I see is some possible sinus congestion-- rings are darker, may have had some sinus pressure or headache this morning. Also, he's about a month out from IVIG. Ugh what to do!? And this boy is not good about revealing clues... Would appreciate any thoughts, info, and advice you may have. Thanks!

I didn't use it for the rash, so can't report-- sorry. Our PANDAS doc recommended it b/c ds had recurrent bouts with perianal strep. Will be interested to see if anyone has tried it for "the rash" we're seeing in our kids, though (I also connected those dots later on).

You can also talk to Dr L about the bleach bath- an ID doc gave her a protocol to use for ds. Just can't recall it with enough certainty to comfortably pass along. My ds also gets the bag rash-- among others. And yes, pre-PANDAS it'd always been given some "eh, XYZ rash" dx. Still don't know what it is with any certainty but now we know it's something b/c of timing.

WOW-- it may not have been such a reach to suspect the Clinda, after all! This morning I didn't give his am dose with breakfast. We started (home)school and had an absolutely delightful morning. The glimmers of improvement we think we've been seeing post-IVIG were all there-- the speech/expression, engagement, his interests broadening again, and even the one that we'd seen but then backslid--his willingness to acknowledge his PANDAS OCD. We passed the usual meltdown/deterioration time, had snack, and I gave his Clinda. Returned to schooling. All was still going great and then it flipped like a switch--right about the same amount of time his dosing had been delayed, so also the same timeframe I usually see between breakfast dose and the onset of issues. He was instantaneously in the full grip of his OCD, everything setting him off, fighting (vs. me, not his PANDAS or its issues), raging, melting down, etc. Obviously I'll want to test this more than once, and revert to the old dosing time to double see if the pattern holds, but I was just shocked to see how this trial played out-- because I really thought I was grasping at straws and doing this more to cross it off the list than anything else. And I'm not sure if it does continue to show a relationship to the abx, if that's better or worse? Is it a side effect of the abx itself, or a symptom of it working somehow on his system-- like a herx? Would a herx type of reaction be timed like this, or would it be more of a sustained agitation for a period? And what implications might this have re: his recent IVIG-- which also makes it trickier (in my mind, anyway) to figure things out. And thanks for the reminder to hold strong through the post-IVIG phase, T.Mom! One of those things I know, but knowing doesn't seem to make it any easier!