thenmama

Hi all, I'm doing some research and writing about insurance coverage for PANDAS treatments-- working on this issue has become a crusade for me. I am trying to conduct a (very informal) poll to see which insurers or TPAs have covered IVIG or PEX specifically for a PANDAS dx. I'm currently researching specific medical policies, and will compare that to actual coverage decisions where possible. Beyond that I hope to (now or down the road) compare how state-regulated insurers' coverage decisions differ from those of federally-regulated plans (my hypothesis: more approvals w/ state-regulated insurance). I'm working on an insurance guide for PANDAS parents, as well as some pieces that'll be broader in scope/audience to bring more attention to this issue. Any help you can offer is appreciated. I hope this is okay to post here? I'm not writing any of this for profit-- it's all strictly to help those in our community with their insurance issues and advocate on behalf of our families in the larger sphere. I'd appreciate it if you can spare a moment and reply (in this thread or by pm if you'd prefer) to the following if your child has had either IVIG or PEX covered by your insurance: 1) IVIG or PEX? 2) Insurance Company name 3) (if known) State or federally regulated insurance? (purchased from insurance company or funded by employer?) Thanks all!

Quickie reply now because I'm a bit slammed... but if you look at my content, I've posted insurance tips in the past. It may be titled something like IVIG insurance success or something like that... 1st: find out what type of plan you have: is it a state-regulated HMO or a federal/ERISA regulated group or self-insured plan sponsored by your employer. Do you have a "summary plan description?" If so-- you should fall in the latter category. This is important because you'll need to know which set of regulations your plan is obliged to follow going into the appeals process. 2nd: What was the reason for the denial? What did notification of the denial give you for dx code, and rationale? What does your policy say specifically about the reason for denial? If it's experimental/investigational, you'll need to know how your plan defines that to know what you'll have to produce in order to overturn the decision. Is IVIG for PANDAS a contractual exclusion? If so, your odds drop considerably (but again, this may depend some on your specific plan, employer, etc.). Huge important rule/tip # 1 with insurance: You'll have to step back from your parent mode/personal investment in the coverage decision when making your case. Emotional appeals, pleas to do what's right or best for your child, etc. will fail because emotional/personal responses don't drive the decision making process (and if there is a speck of humanity in medical management, it's likely repressed between the hours of 9 and 5) . Providing an exhaustive list of reasons the insurer should cover the treatment for your child won't win the appeal for you-- but giving them the one right reason they need to cover it will. So, if you want to win, it's a matter of gathering info, learning the rules and criteria, carefully scrutinizing the initial denial and rationale, and building a strategic, bulletproof case that demonstrates precisely why the insurer MUST cover the treatment per the terms of the policy. It doesn't hurt to have some dirt on them, either, so turn your critical eye on the case records. You'll want to order them right away so you can look at how your claim was handled from intake to the denial letter. Compare that to your policy terms and either state or federal regulations. Anything off? Look a little fishy? Something that did or did not happen inconsistent with what is supposed to happen? Ideal is going back to them with a rock solid case for coverage per plan/policy terms, with a little added incentive for them to do what ought be done the second time around... Says I who won an appeal 5 months ago and is already neck deep in another insane insurance debacle... I'll be on and off this week, but feel free to post specific questions and I'll get back to you as soon as I can. Gotta run, but good luck! TH

Thanks everyone. We've also found that it comes off pretty quickly/easily at cleanings and brushing with baking soda paste at home helps, too. So fortunately I'm not too worried about the staining part -- but noticing the clearing up pattern around other abx got me wondering if there was more to it than I initially thought. I was wondering about biofilms, too. I need to do some research...

My ds gets some pretty gunky/cruddy buildup on his teeth-- yellow-brownish plaque like-- despite good habits and our best efforts. But, I've just noticed what seems like a pattern and has me wondering if there's something more to it. There've been a few periods during which the buildup has decreased or stopped and really cleared up-- with no change in dental hygiene habits. It's happening again now and I've realized this time it began when he was changed from his Clinda to a single course of Sulfa (which he's on right now) for another infection. I have wondered in the past if the buildup was a side effect of the abx (maybe I'd read or heard that somewhere?). But now that I think back, the last time it cleared up I am almost certain coincided with a course of another abx for a breakthrough infection. But that time the Clinda wasn't discontinued-- the second abx was added to it. So, that's got me wondering if the crud is really because of the Clinda, or if it is happening despite the Clinda? Any thoughts on the abx/tooth crud connection? TIA

It depends on your insurance company and the specific language of your plan. Do you have a PANDAS doc or other specialist who knows the insurance game well enough to work on it for you? If not-- I'd be happy to offer whatever advice or information I can to try to help you. After our insurance/appeals experience last year (which was successful), I began writing an insurance coverage, claims, appeals, etc. guide for PANDAS parents. I might have finished it by now but we're smack in the middle of another insurance fiasco-- it's CRAZY! Guess the upshot is I'll have more experience and info to add

Right, but what I'm wondering is if "out of range" would be the values that are 2 SDs+ from the mean-- or if the range is defined by the values that fall within 2 SDs of the mean in either direction? Otherwise, wouldn't it be hard for a Dr to determine SDs-- esp w/o the background info about the data set the lab used to establish the range? Or am I missing something? It has been quite some time since I've had to do that sort of math!

Hi all, I'm pretty sure low results on LabCorp immunoglobulin testing means the result was -2 SDs from the mean-- or for insurance purposes was "2 or more SDs from the mean." But, I'm looking through the notes in our most recent coverage denial/appeal case and the "doctor" who reviewed it on the insurer's end said her results were not 2 or more standard deviations below mean-- but they were clearly flagged/marked low on the set of labs that were sent. I don't know if he made a mistake or misread the labs-- or if I am confused about the flagged low values indicating they are at least -2 SDs? Anyone know the answer to that? And yes, we are there again already w/ our insurance and will I have some stories, info, and new tips to share once we're through... TIA!

Hi, My ds,7, has been on Clinda for months (started on it with perianal strep but his returned whenever switched back to Augmentin-- he's immune def. too). He's homeschooled so it's easier for us, but we dose it about 7 hours apart. So say 7 am, 2 pm, and 9 pm. Depending what time your children leave for school, how long they're gone, and what time they go to bed, would it be possible to space it something like that without having to send it to school? I have no scientific basis to say you have wiggle room, but my docs weren't super hung up on the precision with this one-- and they have been with the timing of meds in the past so I trust they'd tell me if it had to really be exact. Wish I had a more "evidence-based" answer for you-- I'm sure the "this is what we, in our totally untrained/unscientific way, are doing so you ought to be okay, too" reply isn't exactly what you were looking for

Out of curiosity-- do you know what condition it was approved for-- was it PANDAS, Immune Deficiency, Autoimmune NOS, etc.? So glad it went well for you (and hopefully it wasn't too much of a battle/drain on you) and your kiddo can get the treatment he needs! And it's good for everyone-- whenever one of us prevails, it puts another chink in the wall blocking our kids' care. TH

Sorry if I've missed something in your previous posts that would discount this suggestion, but since it looks like your dd has a RF dx (so confirmed strep infection at some point) and has some abnormal kidney-related labs I'd probably ask the docs to rule out post-streptococcal glomerulonephritis if it hasn't already been investigated. Has your dd had any urine discoloration or blood (visible or trace in a sample) or signs of fluid retention/swelling/puffiness? Those would be additional red flags. Good luck tomorrow!

It is definitely OCD that causes this stuff for our guy. It goes away completely when his treatment is working, comes back all at one when he flares. But I wasn't sure what was behind it for a long time, then finally he was able to articulate what was going on. Sometimes it may be OCD about the specifics of the thing: it would require something of him that's not cool w/ his OCD fears or would expose him to something his OCD fears and demands he avoid. Other times it may be that he's having OCD fears about being wrong, making mistakes, doing things wrong, or other times it may be that he needs to know everything and whatever I said somehow throws him for a loop. Other times it may be that whatever I've said or asked of him interrupts a compulsion or pulls him out of some thought he's either stuck in b/c of OCD or has thrown himself into to avoid his OCD. Unfortunately can't add more now-- my ds is constantly setting off like you've described these days. Like living PANDAS whack-a-mole! More soon-- T

Ds has a very high IgG subclass 4-- about double the top of the range. Both of our kids our deficient in subclass 1, but ds is low in 4 and dd is not. I've seen other posts on here about kids who are high in IgG 4 and was wondering if anyone's research and/or docs have given them any insight into this since it seems some of our kids turn up high. I did come across one thing that mentioned IgG 4 and being prone to skin issues, which is true for my ds, but I haven't found much more beyond that mention. Also, ds is subclass 1 is deficient and he has SADs and is IgM deficient so we're heading to IVIG later this week or next week. Wondering if anyone whose child has a similar subclass profile as ds has done IVIG and how your child has done with it. My dd did great thanks to her IVIG, but they present a bit differently. TIA!

Hi Ann, Both of my kiddos are low in IgG subclass 1. My dd had IVIG for PANDAS before we knew this-- though she'd had one low quantitative/serum IgG prior to the IVIG. Her IVIG was a crisis situation so we couldn't wait on further immune testing. Now she's I think 8 months out and we just had labs run and her serum is low again and this time we ran subclasses and it's subclass 1 she's low in. My ds is low in 1, too-- though he's quite high in 4 so his quantitative isn't quite as low as my dd's. My ds is getting IVIG either this week or next for immune deficiency- but in addition to his low IgG values, he is also absent-near absent IgM and has specific antibody deficiencies. Look for a recent post from Browneyesmom about her dd's IVIG- think it was a thread about going from high dose to low dose for the immune def after the PANDAS is in check... pretty sure her dd's lab results were in there (I remember they were almost exactly the same as my dd's, which we'd just gotten back when I saw her post) and I'm pretty sure they treat for it... Wish I was more help, but we're just figuring out the immune deficiency issues ourselves. Interesting that subclass 1 seems to be an issue for many of our kids--or it's just the one that's on my radar TH

Hi, I put together some info for an insurance appeal and while it is targeted toward that, maybe there will be something useful for you, too. Here's a link to a thread with some of my citations listed. IVIG citations thread HTH!

Me too-- though he's on Clindamycin. He was at the doc's middle of last week and we were told his one ear looked retracted from congestion/pressure-- but no infection then. Guess I'll be bringing him in to the ped tomorrow. And I was already planning to contact our PANDAS doc tomorrow to make an appointment, so guess we'll be covered on all fronts. Naturally after I posted this he decided to demonstrate his dizziness for me, and then he posed on one leg and very obviously/gently dropped himself ("fell") to the ground. That could have been him/OCD needing to make everything consistent (feel dizzy so I must become literally dizzy for this to make sense), could have been him trying to demo what it felt like, trying to make me believe what he's feeling or OCD is telling him, or who knows. He's also a 7-year-old part-time superhero, ya know?

When ds came downstairs this am he told me he felt dizzy-- and that he had waited a bit before coming downstairs because of course it hadn't occurred to him to call to me for help or go to his dad and sister who were also upstairs . I looked him over and made him balance, walk, etc. and he looked fine. He also looked like he was still sleepy-- it was a bit early for him to be up-- so I fed him breakfast and then he seemed to be okay. Then a while later he complained that he could feel the earth spinning. Then a while after that one he complained that he felt like he was shivering but he wasn't cold. No fever/visible signs of illness. Seemed warm and no goosebumps or anything. That, too passed after a bit. He's been out of sorts all day and his OCD is spiking (again). Now he just walked in while I was making dinner and complained that he felt like he was in an elevator, an elevator that's going down (he's not my metaphorical child-- he meant the sensation). And now he's complaining of dizziness again-- and said that he feels dizzy only he's not dizzy. Anyone's child experience anything like this? I could have rolled with it being a fluke thing this morning, but with it persisting like this it's really getting me worried.

My first thought is to find out if a neuropsych visit would count as a psych specialist/mental health benefit-- if it does you may not need a referral.

Hi KaraM-- I was trying to PM you about something else-- google turned up and old post of yours about high HIb titers and I wanted to ask if you'd ever learned more about that-- but your mailbox must be full. Sorry to hijack this thread! TH

Oh I agree with you that it's not problematic for him to work his concerns out with our PANDAS doc. That's the only part of this that makes sense to me. What really upsets me about this is that we've been carrying on with this charade of heading toward treatment since December only to find out that there's been some dragging of feet behind the scenes for reasons that were not shared with us until yesterday. If there are concerns, I need to know about them so I can make an informed decision about whether we should step back, re-evaluate and address them with this team, or move on and seek care elsewhere.

Yeah, I don't know what happened-- he was the one who referred us to Dr L and he's going back to her about this-- so that's better than it could be. And I gave him Dr B and Dr T's names as well. But I agree with you-- I'm not willing to waste time/energy convincing docs at this point, either. I don't see it as lazy, though, I see it as practical. My kid needs help now so my feeling is get on board or get out of my way. Good suggestion about treating through Dr L, PowPow. It's on my list of possibilities. But if we did the treatment with Dr L, I don't know if our insurance could cover the treatment if we paid out of pocket for the office fees? I thought from when we did dd's treatment that wasn't a possibility, so I'm not holding out a lot of hope on that front. He's got an immune deficiency and practically speaking, we really need this covered because we still haven't been reimbursed the almost $8k that's owed back to us for dd's IVIG (by the IVIG provider that was paid by both us and our insurance-- another long story and thing I've wasted too much time on) and it's been suggested multiple times that he may require more than one b/c of the immune issues and his situation.

Hi all, Even though our treatment plan is hovering midair right now-- waiting to either crash or fly... I said I'd look into possible agencies for the IVIG so if things come together we know where to look. We'd prefer not to use Critical Care, which handled our dd's IVIG (badly). So, we're looking for another home health agency or facility or something-- that can get the Gamunex and do HDIVIG. We're also willing/interested in other immunologists that would be in network that are able to work with PANDAS docs and/or do IVIG for PANDAS kids with immune deficiencies. Also, depending on how things play out, we may need to look at other PANDAS-friendly peds in the Richmond area. So, figured I might as well ask about it all at once... TIA!

Dunno why it's so hard to accept-- especially since this is the same doc that ordered my dd's IVIG for PANDAS, knows that it has returned her life to her-- and has been with us through both kids dx, dd's treatment, and on board w/ ds's up til now. And this doc sent us to Dr L for dx and treatment in the first place so I don't get why we're calling her again now-- weeks-months after the treatment was to have been provided-- only to ask if she really meant it??? Based on some labs that reveal nothing new?

We just had an appointment with ds's doc (rheumy) in which we were informed the IVIG that was supposedly being lined up for ds (which Dr L said he needed for his PANDAS at the beginning of December!) is now in question because something has apparently changed in this doc's mind over whether or not ds really needs it, and I guess whether or not he actually has PANDAS (Dr L was the one who dx'd him with it). The plan was initially: IVIG to boost his immune system, followed by tonsillectomy (per Dr L, but agreed on by everyone). It's been taking longer than it should and ds has been suffering, but it seemed things were finally moving forward. Last week they were working on finding an infusion provider and ordered one more set of labs to get a new baseline read on everything before the IVIG. So, we go into our appt today thinking we'd finally be knocking out the last of the details. I was also hoping we could talk about how to help him between now and then since this has been dragging on and he is suffering-- urinary accidents back, OCD bad, meltdowns/rages, checking/compulsions, tics, separation anxiety, needs to sleep in our bed, constant movement, sucking his thumb for the first time, etc.-- the whole cluster. Instead, mid-appointment the doc basically called the treatment, and I think ds's PANDAS dx, into question-- he said maybe we should consider other things to help him with his "anxiety"-- like some play therapy (if you knew my kid this would seem even more ridiculous--his idea of play is algebra). Other things that were said during the visit include: his strep titers weren't raised, neither kid's were, he said their immune deficiencies were only on paper-- that they were not meaningful to them clinically. Somehow he now thinks ds isn't "episodic" and it "doesn't sit right" or "add up" because it's not "clear cut" (to him). But it is to us still-- it's still the same as back when it was clear cut and episodic to him. Sometimes ds has this cluster of symptoms, sometimes he doesn't. Having them is preceded by illness/infection, not having them comes about via abx and/or steroids. Nothing is different now--except we saw an immunologist who he recommended and we agreed to give a shot even though we knew she has a terrible rep re: PANDAS-- so maybe she's the one who planted the doubt. This rheumy has said in the past he's seen the night/day difference in ds. But somehow now, with a new set of labs in hand that say exactly the same thing as the last set of labs-- he feels he needs to send the labs up to Dr L and talk to her about his concerns and maybe she'll say she's seen kids like ds and he'll be okay with it or maybe we should think about other things, or maybe she can give us a different abx to try and we'll just see, he'll call me after he talks to her... because it's just not as clear for him as it was with dd... In the meantime, my poor kid can't sleep in his room or do school or any of his normal activities, can't play with friends, he melts down constantly, has frequent urination and accidents, can't go out in public, etc. A few nights ago he said to me, "I wish I wasn't afraid of things 7-year-olds aren't supposed to be afraid of-- I wish I was only afraid of the things most 7-year-olds are afraid of." and "I wish I wasn't different." and "Why is it like this? It's just so bad..." I'm stunned, panicked, frazzled/freaked, frustrated (alliterative!), and now, as I sit with this, I'm just really, really angry. If the doc has concerns that's one thing-- no problem there, let's address them. But, to allow me to go on thinking we were working toward an agreed-upon treatment plan, while he was dragging his heels but not saying anything about the concerns he'd developed-- that's just not okay. If I had known this was happening, I would have been able to either address the concerns with this doc or jump ship-- either way I would have been an informed participant in my child's medical treatment plans. Instead I've just been waiting around while my poor kiddo has been flaring and miserable and losing even more of his life to this. I suppose it's possible Dr L will call him back tomorrow and say (what I hope she does), "Why hasn't he been treated yet-- everything looks the same, and we agreed to do this back in December!" And maybe we'll go ahead as initially planned. But it feels like everything has exploded now-- this was a doc we'd really trusted. And I have no idea where we stand anymore. Anyway, just needed to get that out-- thanks for "listening," friends.

edited: I'll also delete the comments I made that derailed this thread in deference to the more important matter bulldog24's post was intended to address.

Hi Tracy, I'm swamped at the moment, so unfortunately don't have loads of time to reply today. But, to get you started, here are direct links to a couple of things I've previously posted re: IVIG insurance appeals: One post with some info My big fat post re: appeals If you'd like to ask me specific questions feel free to reply or pm me. HTH!