thenmama

Oops, title truncated: meant to read: a study, etc. out of UNC or in NC? Heard about something of this nature today--the person who mentioned it to me was asking if I'd heard about it or knew where to find out more about it. I haven't heard of anything pro-PANDAS in that area, so figured I'd ask our hive to see if someone else has. TIA!

Do you know who the new medical director is? We dealt with a med director who'd denied our daughter's IVIG and left for a job with Cigna while we were in the appeals process.

Colleen, Wanted to toss out some other things for you to consider as you try to determine the significance of your child's lab results. His Parvo IgM may have tested negative because his serum IgM is low. My kids and dh are IgM deficient and we've been told that IgM results may not rule specific (acute or recent) infections in/out because their bodies do not make enough IgM, period-- so even if they had enough to mount some sort of response, what would be elevated for them still may not register as positive. IgM is the early/first line response to infection, so you may notice your child seems more susceptible or may have difficulty clearing his illnesses-- the typical presentation/progression/general course of the illness may be different for him, the illnesses may stick around longer, or he may seem to get hit harder or have a "worse case" than other kids or other family members. And just as a heads up before you talk to your child's doc-- in our experience, different doctors have different ways of approaching the significance of low immunoglobulins. For some, it's significant if it falls below the lab cutoff (so flagged low by lab like your son's was- which means it's > 2 standard deviations below norm), others don't consider it "clinically significant" unless it's very well below that lower limit. And some docs seem to rely solely on the numbers, others look for abnormal/low numbers and evidence of impairment from patient's history/patterns of illness, and others will say that history/presentation is the primary indicator of impairment even if the numbers fall within the lab's normal range. The other thing that I wanted to mention in case it is relevant, relates to what mdmom posted about infections that have been around a while. I've read about IgM/IgG levels for chronic EBV and it seems that IgM may not elevate with recurrent illnesses. I believe I've read that about other pathogens, too, just can't recall the context right now. If I think of it later I'll try to find the source and post for you if it seems relevant. HTH!

You are not overreacting. Patients (or their parents) shouldn't have to pay for phone calls in between scheduled appointments to get a response from their doctor and when they're sick they really should have access to either a sick visit or a phone appointment with the doctor, and they should definitely get a call back from the doctor to help when problems arise. Being terribly busy is no excuse for not properly caring for one's patients. I don't know how many times I've heard the excuse, "They're so or too busy because they're trying to see as many kids as they can." But getting kids through the door, diagnosed, and started on treatment isn't good enough, or fair, if they can't provide adequate ongoing care. That's a sign that they shouldn't be taking on any more. When they don't have time to fully meet their existing patients' needs, then they're seeing too many patients. I think it is especially problematic when they also don't respond to their patients' primary care docs either (we have a problem with that, as well, and our PANDAS doc, or staff, has totally ------ up my kid's ordered treatment and I can't even get them to fix it, which should take five minutes and months later I'm still making calls and nothing's getting done...). Think about it: would you take your child to a general ped or other care provider that was so inaccessible? It appears to me that this is, or is now becoming, a serious problem in the PANDAS community. PANDAS families are desperate for help, so we're often forced to just take what we can get and because the docs are treating our kids we cut them a lot more slack than we would otherwise. Even if the doctors have the best intentions, they're not properly caring for their patients when they practice like this-- and it's unprofessional. If they can't handle their current patient load and/or the demand for new patient appointments they need to bring in a partner or hire more or more competent/better able or trained support staff to help them meet the needs of all of the practice's patients. I would also like to see them coordinate with primary care docs and other specialists and provide treatment plans for their patients that could be followed by their docs at home when a crisis arises.

Edit double post.

IgM is the early response immune globulin--Sort of the system's first line defense. This is why they test igm levels to see if someone has had a recent infection w/ a particular antigen. The IgG response follows. Igm def. (SIgMD if only igm low) could leave one open to more severe or longer lasting infections, greater susceptibility to complications and secondary infections, etc. SIgMD is often paired with SAD. SIgMD is pretty rare, so there's little info about it/ treating it. In some cases ivig is used bc even though it doesn't give the igm the pt needs, they may need the Passive immunity it provides for other reasons. But don't worry- IgM in the 40s isn't likely to be worrisome. My dh, ds, and dd are igm deficient. Dh was around 25 last check. Dd around that too (she's lower--relatively-- in her igg). Ds's igm fluctuates between entirely absent and barely there-- like one time it was 11, the next time they couldn't detect any. Curious how low others are--And wondering if levels fluctuate with flares? Typing on phone stinks so that's all for now... Lmk if you want more info.

Awesome-- thanks for sharing Hope the appointment is worth the trip, too!

Thanks for all of your responses! No time for a proper reply right now, but wanted to let you know I appreciate all of your help/support. We're going to the allergist this afternoon and I'll post an update. I'll also share if I get any interesting info about the varied relationships between test results and reactions.

Thanks for the response and good info. I don't think your theory is off the wall. I'm no scientist, but to me it seems entirely possible that genetic modification could, and if I'm not mistaken in some cases is actually specifically made to, modify plant proteins. And b/c of the role of proteins in allergies... seems very plausible to my (admittedly more humanities-oriented) mind. We eat organic whole foods so I think we probably aren't dealing with primarily gmo or processed ingredient allergies (but that might explain some smaller, inconsistent reactions he had when he was younger). Despite our usual homemade-only approach, though, these were actually store bought popsicles. They'd been picked up for my dd who'd had strep and been blowing through the cold stuff. But ds saw them and really wanted one... They were organic and had only three ingredients in them, of which coconut is the only one ds hasn't had very regular, long term exposure. And I've been suspicious of coconut in the past, but was never able to determine for certain if it was a problem. After reading more about coconut allergies this weekend, I realized this might also explain the allergy-like symptoms ds always has after bathing and sure enough, all of our soaps and shampoos have coconut ingredients (and apparently most do, especially the all-natural varieties--fortunately I'm good w/ diy!). Oh- and we did have to remove corn when ds was a toddler-- and you're right that it is in everything! Well, I've had all sorts of docs not believe me and/or scoff when I told them my kid was having food allergy reactions despite his negative allergy tests-- and look where we are now. I can't imagine if it had been worse and I'd needed that epi pen but didn't have it because I had been pegged as just some over-anxious mother (who couldn't tell the difference between an allergic reaction and some viral, PANDAS, and behavior issues), and no one ever considered that I may have been right and his test results may have been wrong or took me seriously enough to cover the bases just in case. Thank goodness our new ped takes me seriously no matter what the "evidence" or conventional thought suggests.

I'd definitely investigate both the possibility of reaction to the antibiotic and Scarlet fever rash as mentioned above. Beyond that, both of my kids are prone to strange rashes, and a number of others on this forum have reported similar rash issues with their kids. Also, my kids started getting "keratosis pilaris" bumps with their PANDAS-- if that's what it really is. Arms and cheeks are among the places prone to that, as well. HTH

Thought I'd toss this latest development out to the forum on the chance one of you may have some thoughts, suggestions, or resources to share... On Saturday my ds had a frightening allergic reaction to a coconut popsicle. He developed a very large, pronounced wheal where it had touched his cheek (> size of a quarter), plus swelling in his lips/mouth (his speech clarity was affected). He had an incident in April that I believe was also a significant allergic reaction to food (possibly nuts, and a scary reaction, too-- he said his esophagus was itchy, had anxiety/panic, hoarseness, possibly wheeze-stuff that makes you fear anaphylaxis). This is the same boy who, except when he was a toddler and tested positive for many things, has tested completely negative for all allergies on multiple occasions but has continued to have allergic-seeming reactions to things-- with increasing severity. I'd gotten a call from one of our kids' specialists on the day of his last reaction so we'd addressed it with that doc. He added blood allergy tests for a few items to ds's lab orders, but nothing came of those (only one was not completely negative-- almond--but that was only a level 1 which is basically considered negative/clinically meaningless--and coconut wasn't tested). This time I took ds to our awesome ped. I emailed her a pic I'd taken of Saturday's reaction in advance of our appointment on Monday and she said it was definitely a serious allergy reaction. She said his coconut allergy is confirmed (by the real life allergy test) no matter what further blood or skin tests show. Fortunately it was at least easy to nail the culprit for this one, but we're pretty certain he didn't have anything with coconut the day he had the reaction in April, so there's likely at least one other thing he's highly allergic to. We left our appointment on Monday with an epi-pen to carry at all times, an order to avoid coconut as well as all other nuts for the time being, and we have an appointment with a new allergist on Friday (ds is scheduled for testing Friday, too--the appointment is a few hours). We're concerned about how to protect ds from threatening allergens if we can't get good clues from his allergy testing, since these are not the sort of reactions you can afford to take lightly. Does anyone else have a child with a severe allergy? How about kiddos who test negative but definitely have allergies? Anything I should specifically ask the allergist? Or...??? It's just terrifying to think that my little guy has a potentially life-threatening allergy. Still reeling from this one.

Thanks for sharing the happy news! It is always nice to have a chance to see the bright spots in our kids' lives. And I know with all the challenges presented by PANDAS, this must be especially sweet and for you and your family. I'm so glad that your talented dd is getting this opportunity to pursue her passion.

This was a really good post, and blog-- thanks for sharing!

Ditto the good advice you've gotten. If she isn't showing symptoms of the illness anymore (so you don't see reason to pursue further assessment/treatment for the acute illness right now), then I would really work on the anti-inflammatory front as suggested. I also recommend doing anything else you can to help her system rebound from the illness, which can really deplete a little person. Being physically wiped out makes it that much harder on her-- and much easier to succumb to the OCD wave that she's experiencing right now. Our PANDAS doc has mentioned that fatigue/being tired and worn down could be enough to trigger some mild symptoms (but this was said about a particular instance with our dd, who was not back to baseline at the time, so please don't take or apply this too generally without further clarification from a more knowledgeable source). Anecdotally, when they're not at baseline my kids' PANDAS symptoms are definitely worse when they're tired or run down. So I also try to replenish them as much as I can in the post-illness period. Extra downtime/rest/sleep (if I can get them to sleep extra), and make sure they're getting plenty of the good stuff to help their bodies recover: nutrition, vitamins, whatever supplements are appropriate for the child/situational needs. Just really pushing the health-boosting measures while going at the PANDAS symptoms, too. Some people have success using steroids for the inflammation in these situations (seems like a mixed bag). This has helped both of mine considerably in post-illness phases. My ds, though, tends to have more mixed results than dd while he's actually taking the steroid (it calms some symptoms a lot but seems to aggravate others a bit and it has more noticeable effects of its own on him, too) so for him it's post-illness, post-steroid that we see the biggest improvement. My kids get the yellow teeth buildup, too-- and it does always come off at dentist. We also use an occasional baking soda brushing to clean it up. Also, sometimes a gauze pad is enough to remove it (especially if you catch it quickly). You can also get the little dental tool kits at the drug store to clean it off if the buildup is getting bad. The Sonicare toothbrushes do a decent job at it-- better than the manual brush did, I think. BUT what I hate about those is the cost of replacing the heads-- since my PANDAS kids and their recurrent illnesses/strep require more frequent replacement than is typical. We also have one brush per kid, which is more expensive than having one handle with a separate head for each user, but no way my kids are sharing anything that comes in contact with their mouths. I'd give them each their own bathroom if I could!

My dd was dx'd with strep on Monday (woke up sick with a sore throat, swabbed positive). She was switched from Augmentin to Clinda-- started taking it Monday night. She woke up today with what seems like URI symptoms. Her nasal congestion/running is way beyond the allergy sort, she's feeling all around lousy (more lousy), and now she's starting with a wet, mucus-y cough (that she says feels like it comes from the chest, not the nasal drainage, but I've got to observe a bit more-- still think it could go either way). Not really typical for the course of strep infection-- so maybe strep plus URI? Of course these illnesses are all just variations on a theme for her. I'm probably just overthinking it or worrying more than I otherwise would about the presentation because we actually got the positive strep test this time. For dd that's actually the only unusual part in all this... Ugh.

Yes! I see this with both of my kids. "Think before you speak/act" has become a mantra around here... And we really emphasize "the golden rule" in our home (which we alternately refer to as "Do unto Otters" b/c we have a picture book with that title). I'll sometimes just use the word "otter" as a prompt, or like a secret code in the presence of others, if I notice a kid needs to be reminded. I think the impulsivity and compulsivity manifest in multiple flavors. Some of it really is a simple filter loss-- like the "you probably shouldn't say/do that" screen has come off and there's just open flow for the cringe-worthy. That filter loss is also sometimes paired, quite unfortunately, with social anxiety and a tendency toward nervous chatter. Yikes! We've tried implementing guidelines to follow for speaking-- like take 3 deep breaths or count to 5 (or 10) before saying anything-- with mixed results. We've also tried talking about both specific and general social situations in advance and setting some parameters for speech and behavior in those situations. For example: limit your responses to others' questions to 2-3 sentences, apply a similar limit to a particular topic (like the one the child defaults to talking about when nervous), only talk about X topic a certain number of times, if someone is too close to you reposition yourself and how you're facing them and stand with your hips shifted back a little and one leg out to maintain the distance you need, etc. Oh, and of course we need to (re-)state the obvious, for example, never comment on how a person smells! I also emphasize the "if you can't say something nice" principle. Sometimes, though, it is more OCD driven and in those cases the questionable/inappropriate thing that is blurted out is really either an OCD-driven compulsion to say/do that particular thing, or part of that fight or flight/strong reaction to the fear or stimulus. Another variation of this can be when the child has an OCD issue, say fears around doing something "wrong" or "bad" or about truthfulness, precision, or lying (one of mine used to worry about responses she gave, fearing she may not be totally accurate, or might accidentally lie). When the child with that type of OCD fear is in a situation that would require him or her to answer questions that would require a bit of diplomacy, s/he may not be able to pull it off because the OCD is driving the response. Any fallout caused by the lapse of manners/tact is not as frightening as whatever the OCD is threatening them with. In that case, we treat it like OCD and practice ERP. Still other times, I notice this sort of thing as an expression of heightened sensory sensitivities (which I think can elicit a similar fight or flight type response). My little guy is hypersensitive to smells right now and he's constantly letting rude, obnoxious comments fly because of it. "Ewww! What's that stinky smell? Is it you?" or "X [insert person, place, thing] smells sooo bad!" Pair this with the boy's volume control issues (lately he can't get below a five on his "volume dial" and typically he's upwards of 7-- it goes to ten) and we've just got walking, blaring rudeness... When I am trying to address a behavior with my kids I first try to step back and look at the big picture and for any patterns that may be present, and/or I'll talk to my child to see if I can get at what's driving the behavior. Then I can address the underlying issue instead of its symptoms (the individual incidents). HTH

I'll email you now and will reference the forum in the subject line so you'll know it's me. I've got your address, so you may want to edit your post now to remove your personal email address from the public's view.

She's about 100 lbs and taking 500 mg Augmentin twice a day. She does have tonsils. We're known to have a particularly evasive or virulent strain of strep in these parts. I suppose it could be the particular strep strain around here and/or our particular kiddos' immune systems. Both have some deficiencies. Dd's IgG is low, but not crazy low or absent-- it's been falling in the 500s (the low end cutoff for the lab's ref range is 760). It's her subclass 1 that's low if that is meaningful. She has failing strep pneumo titers but we won't do the vax challenge b/c vax have sent her into exacerbation in the past. She's at the low normal limits for IgA. Her IgM was also low/out of range. We just got her immune testing done this spring-- after our ds was found to have deficiencies and she'd been getting sick about once a month. Anyway, the ped we saw today, who is our pinch hitter when we can't get in to see our primary, put dd on a course of Clinda, so she's got something to take for this while we catch up with the rest of our doc squad... Really appreciate our great nurse today, though. The one time it's good for a PANDAS kid to test positive for strep is when she has strep.

The bad news is dd, who has had some PANDAS uptick this weekend and woke today complaining of a sore throat, tested positive for strep this afternoon. The good news is that we actually got the positive and confirmed it for a change! My kiddos NEVER come up positive-- even when dh had confirmed strep and they had sore throats and were totally PANDAS-tweaked (the docs treated them anyway, of course, and they both responded). Both of them have overactive gag reflexes and don't do well with the swab-- they always pull away (instinctually, I mean, they do try to cooperate). Dd mentioned that to the nurse before her swab today and the nurse suggested they try it lying down, so she wouldn't pull away b/c her head would be resting on the table and maybe they could get it right the first time. I can't imagine how we've never tried this before; it seems so obvious. It was a much easier and faster process this way. I was expecting the doctor to come back as usual and say it was negative and probably viral (especially since she's on Augmentin). But to my surprise--she came in and told us it was positive! It made us wonder if it wasn't just a coincidence that she tried lying down for her swab for the first time today. Dd said this feels just like all of the other sore throats she gets. The ped flagged her chart with instructions to make sure they swab her this way every time. Anyway, just thought I'd share in case it might help someone else whose kiddo has difficulty being swabbed.

Something seems fishy-- it's still in the covered category in the most recent HPHC IVIG medical policy I could find. Did they quote a new IVIG medical policy in your denial, or did they send a summary of changes/modifications to covered benefits for your plan that reflected this change? Have you gotten a copy of the case records and all materials, guidelines, protocol, etc. they referenced in making their decision? If so, what's the last date of revision on the IVIG policy? I'd definitely push on this one and if you've hit the limits of your ability to pursue it (or your energy for it-- this stuff is such a drain at a time none of us needs another obstacle, or stressor!) I'd second Nancy's suggestion and go to your state bureau of insurance or ombudsman (if your plan is fully-insured) or to your company's HR department (if it's funded by your employer). The thing to remember about insurance is that it's not really about providing health care or benefits; it's really a system of limitation and denial-- for the insurance company's profit if you have a fully-insured contract, or for your employer's financial benefit if you have employer-funded benefits. Sure, some are better than others about covering what they're supposed to, but my guess is it's more common or likely that switching plans winds up being a lateral move (or potentially a downgrade--as we experienced when we moved here). Also, so many things are dependent on specific circumstances and how individual plans and policies are structured-- so an insurance company/TPA that's fabulous for one family might be terrible for another, depending on the specific plan or benefit package, if it's an employer-sponsored plan or a plan purchased from the insurance company (who bears the risk/pays the claims), and the particular staff responsible for processing your group's claims, etc. So I'd just be cautious about jumping ship without taking things as far as you possibly can with this company (especially since it is a company that has precedent for covering it-- your shot may be better there in the long run). There's so darn much to this insurance thing and so much of it is dependent on the individual policy and how it's funded that it's hard to give very specific advice. But if you haven't done any of the following things, I'd start with these: 1. find out whether you have a state or federally regulated plan (is it purchased from the insurance company or does the insurance company just administer/manage claims for your employer?) 2. if you haven't requested the case records from the insurance company request them 3. if your plan is fully-insured, contact your state ombudsman and/or BOI for help; if it is employer-funded, contact the employer (start with HR if you're not sure where to direct your questions) Anyway, wish I could provide more targeted advice, it's just hard to know what to suggest because everyone's situation is so different. Feel free to ask specific questions, though.

Thanks for sharing this excellent news, Stephanie! And don't worry, I don't think anyone here will take your post as anything but what it is: a member of our community posting about their family's experiences with PANDAS. We're a community and while the balance of posts will naturally skew toward the crisis/problems/issues side of things, it's totally appropriate, and really important to have some posts about things working, kids healing, families getting back to that place we're all working toward. I am glad you decided to post about this because I think when our kids are sick and suffering it's easy to lose sight of our goals and start to feel worn down by it, maybe a little hopeless or defeated. It's also good to know about what other people have discovered and what approaches are helping other kids, most especially if/when we haven't yet found success for our own kids. I have learned so much from members of this forum who've had to go beyond the abx/steroid/immunomodulatory regimens to help their children and think it is really good for everyone to know that there are other roads to healing. We also need reminders that there's reason to hope and carry on. We all care about the members of our community and want kids (and their parents) to heal, so your family's good/positive developments should be happy for all. TH

If you your Dr will Rx it for your child to have locally, you could also try Critical Care Systems/Accredo or MedPro Rx to do the infusion. We're in central VA and I'm pretty sure both infusion providers operate south of here. Actually, MedPro may be based in NC-- or have locations or offices there, anyway. I think it's a NC number that comes up when they call. If you need phone numbers, feel free to pm me. We travel north to see our PANDAS doc, though, so unfortunately don't have a treating physician to recommend. Good luck!

Cobbie, I wish I had some more tangible help to offer, but still, just wanted to add another voice of support for you during this difficult time. Many of us here know firsthand what you're going through and while that doesn't help remedy your situation, diminish what your family is going through, or change the stress and other emotions you must be feeling right now, I hope it at least helps you to know that other people get it and are here for you to help you and your family through it (as we're helped by this community when it's us in crisis/distress). We're in a waiting for treatment mode here, too and it is getting increasingly frustrating. So hard to see your child continue suffering and losing periods of childhood when there's something that can be done but it's just taking too long! I thought I'd at least mention that one of my two kiddos gets pretty tweaked from the steroid itself-- so while it generally calms the PANDAS symptoms while on it, we tend to see even more benefit shortly after stopping it. I don't know if you've done the steroids before to know how your child has come through it, but thought I'd mention it in case that possibility exists. I hadn't heard bigmighty's suggestion about Ibuprofen dosing following steroid before (adding it to my book for future reference)-- but my kiddos do get relief from Ibuprofen, so that might be worth a shot. It helps my dd's (12) mood issues considerably. I hesitate to even suggest this to you when you're already overwhelmed because it sounds like even if you thought it might help your child it'd be a challenge for you to try this given the circumstances and timing, but... another thing that we find helpful (when the kids are able to handle it) is making life highly-structured and/or getting them involved in something that we know would typically be engaging or exciting for them (even if their current state prevents them from mustering enthusiasm/excitement for the idea). We try to find something they'd normally want to throw themselves into so once they get going it might "block out" some of the bad feelings or get them redirected and focused on something positive/pleasant. When we're in a spot that they can't get excited or interested in projects like that, but they can handle some basic routine or scheduling, then we just try to fill each day with one thing right after the next so at least there's no downtime (which tends to make things worse-- with nothing to do/think about but feeling badly). Also, my dd sometimes makes herself lists (or we make them together) of things she might do when she's in the "feeling lousy" state and/or she needs some distraction. She generally includes a range of activities; some related to her areas of interest/passion (when she's feeling well--obviously passion wanes when she's flaring) and some are just "keep busy" sorts of things. That way she has a variety to choose from and can fall back on the list when she can't get herself going on anything. Exercise really helps my kids, too. If they aren't in the state that they'll do it on their own, I try to find a way to get them moving. Sometimes I'll use excuses to get them going like, "The dog really isn't getting enough exercise so we need to take him out for a jog or a hike today." As a result (of desperation and this horrible waiting game)-- we now have an enormous new trampoline in the backyard! My dd sometimes says her aches, fatigue, etc. are helped by the activity, and it tends to help some with mood. But, there are also times that they just can't handle activity, structure, etc.-- or even getting dressed for the day. I hope you'll be able to get your son some short term relief and get the treatment date moved up. Hang in there!

Awesome!!! Thrilled for your family!

Thanks for the replies so far! Kiera, I typed a reply to you but it got lost between hitting the button to submit and posting. Ugh. I am usually careful to copy all right before I hit to submit but apparently I forgot this time It may have been info you already have, anyway, so I'll hold off on starting over-- but if you need a hand with your insurance stuff or need any other info feel free to ask me and I'll do whatever I can to help. Unfortunately we're in the midst of another insurance fiasco ourselves right now. But, on the upside, my last appeal was prior to the latest (1/12) round of PPACA regulations to hit, so even though I would have preferred to take on that research on my own timeline, at least I'll be all caught up when I am posting here and now I've got a jump on it heading into the writing process... TH