momto2pandas

I did discuss with our doctor the idea of needing the peak levels to treat autoantibodies vs. the steady levels to better treat infection. He said that it's hard to tell what would happen if we switched - it depends on whether the main benefit they're getting out of it is keeping infection at bay or reducing autoantibodies. Like you said, I think it may be possible that the original 1.5 dose and/or the ongoing antibiotics are keeping down what was kind of a low level of autoantibodies to begin with. They are very young (4 and 6) and were treated quite early in the process, so that's possible. And then it's possible that most of what we're getting out of the IVIG now is protection from additional infection - so the subQ would actually be better for that. Ds4 does have impetigo now, so we're not getting optimal infection protection at this point (though he has ZERO PANDAS with that impetigo, interestingly.) Our doc said that the only way to know would be to try using a dose that would try to mimic what they're getting now, and then we would revert if we weren't happy. It's a real debate for us because we seem to have them at 100% now with PANDAS sx - they are due for their infusion this week and are still at 100% - so on the one hand I don't want to change anything, but on the other hand it sure would be nice for it to be more convenient and easier on the kids given that we're in for this for the long haul, and I do feel like we still have some room for improvement in getting my CVID kid fully protected. I'll ask the doc when I see him this week if he has other PANDAS kids on subQ and how they're doing.

Is there any solid evidence that SubQ won't work in PANDAS? I ask because we're thinking about moving to it. I was scared of anything below 1.5 g based on the info on this board, but I have to say that my kids are at 100% now with 0.75 g/kg every 3 weeks (we expect this interval, unlike many here, because my kids have CVID [in one] and subclass deficiency close to CVID [in the other]). Their doctor follows their trough levels and I don't know what they are, but whatever they are, it's working. Based on this, we're thinking about moving to SubQ at an equivalent dose, for convenience and because it's supposed to be better protection against infection. So I am very interested to know if there is actually evidence suggesting that subQ is bad for PANDAS, or if that's just a guess. Our doctor treats quite a few PANDAS patients and he seems to think it's a good idea - that we have a better chance of eradicating and preventing new infections with strep if we keep the levels more steady. I think it's a balance and may depend on whether a child's main issue is not being able to fight off infection, or having a massive autoimmune response to infection, even if they do fight it off. In our case, PANDAS was always fairly mild and my kids didn't have very high levels of autoantibodies (based on Cunningham, anyway); the problem was that the kids could NOT get rid of Strep so it became chronic. Maybe that's why as long as they're getting enough to keep infection at bay, they're good. For others with normal immunity but a big autoimmune response, the main effect may well be suppression of autoantibodies, which needs a higher dose.

Hi, I happen to know this situation since we see the same pediatrician ("Dr. G") and we tried to get IVIG at the same hospital. Dr. G was willing to order a higher dose for us (the dose that Dr. B recommended) but neither the hospital nor the infusion center covered by our insurance would do it. It's against their safety protocols. He and his staff actually spent a lot of time trying to figure it out for us. Since Dr. G (the pediatrician) didn't have anywhere else to send us where he had privileges, we got stuck. Dr. McGhee at UCLA knows PANDAS and has been willing to do higher doses with us -- I'm not sure how broad that willingness is. He might have been willing to go higher with us in part because we had had the high dose before at Dr. B's. However, my kids have been doing well on 0.75 mg/kg so I haven't had to push it. Even after they went off of antibiotics and got sick and started to relapse with a little bit of PANDAS symptoms, I thought that they would need 1.5 to "jump start" again and Dr. M was willing to do it, but they were so good after the first half of it (which Dr. M had predicted would be the case) that I canceled the second half. Amazingly, ds4 is healing from impetigo now (I think he got it during our trial off of antibiotics) and still has ZERO PANDAS symptoms. Ds6 seems to be reacting to his brother's infection just slightly - but I'm not even 100% sure. He just seems really tired and a bit crabby, nothing distinctly PANDAS. Best of luck!

I think that what you're trying to convince yourself of is correct! I had two years "out of business" when I was a little younger than you, and since I've been "in business" again (now 25 years or so straight), I don't get much time for naps, reading, writing, pursuing interests, etc., and I wish I had that time. When I was "out of business", I did spend a lot of time reading, but I also spent a lot of time journaling - just writing for the heck of it, writing my experiences, my thoughts, feelings, plans, worries, etc. It was good for my writing skills, but was also good for my mind and soul. I had been through a lot (as I'm sure you have), and it was very therapeutic to get it all out. I still have tubs and tubs of old journals. I haven't had the guts to go back and read them yet but some day I will. Anyway, that's one recommendation. Another recommendation if you're really bored: get Netflix and one of those instant download machines. I have one now, and MAN, do I wish I had time to watch e.g. the WHOLE LOST show (season 1 on), all of the HBO series from start to finish, etc. Granted I haven't had time to watch much TV for the last 25 years, but I sure wish I did now that it's all at my fingertips... And another recommendation: If school is nearby (or any school is nearby), why not audit the classes that you'll be taking next year? That way you could learn and keep busy/interested while not worrying about grades or consistent attendance, and if your first year back is stressful, at least you'll have a jump on the class because you will have seen/read the material before, maybe thought about ideas for papers or read some of the books... so it will take off some of the pressure. I'm thinking that you could audit at no cost. And another: exercise is so important to our health, and once you're 100% "in business" again, it may be hard to find time for it. Perhaps an athletic goal to pursue? Run a long-distance race or something? Get yourself into some kind of exotic yoga pose? That kind of thing is great for body and soul, and a sense of accomplishment as well. Trips to a gym would also get you out and socializing. And again, it would help you start next year ahead of the game by being in great physical shape. You could always, also, volunteer for an organization that doesn't require such reliability. I don't know your interests, but many organizations need help with one-time project or event work or just "being there", anything from socializing abandoned animals at a pet shelter to cleaning out the file cabinet in a church office to revitalizing an old building with new paint. Getting involved like that can help with the loneliness aspect, as well, and may lead to some paying gigs - and in any case is good for one's resume. Many communities have volunteer coordinating organizations that sort out volunteer opportunities into one-time gigs vs. ongoing stuff. Or try a site like volunteermatch.org - or I'm sure you could google and find others. Good luck and try to enjoy the time!

Prednisone is certainly used for maintenance for some other autoimmune disorders, but I haven't heard of it for PANDAS maintenance(not that I'm any expert on this). Will your son be getting IVIG every month for immune deficiency/chronic infections, and if so, at what dose? Higher doses are apparently antiinflammatory, so I would think that if the dose is high enough, you probably wouldn't need prednisone maintenance. However, it seems that some people here have not had great results with lower doses of IVIG for PANDAS (half a gram or less/kg), presumably because although those doses are immune supportive and may help fight infections, they may not necessarily be anti-inflammatory. In such a case, ongoing prednisone might be useful. I would think that if your son has an immune deficiency (presumably that's why you were planning IVIG every 28 days), ongoing prednisone without IVIG might not be a good idea, since long-term pred can increase susceptibility to infections (although maybe not at such a low dose, not sure about that). So if the doc wants you to do ongoing pred and ongoing IVIG, I wouldn't cancel the IVIG part if it were me. If you just had your first IVIG 3 weeks ago, it seems a little early to go to low-dose antibiotics to me. All of our docs wanted full strength for at least 3 months. And when we tried going off after that, we failed within a week...so it's back to daily for us. My kids had a first IVIG dose of 1.5 g/kg, followed by monthly 0.75 g/kg and daily antibiotics. That worked very well in ridding them of all symptoms, up until the last few days of each month when some anxiety and irritability would start to creep in again (mild - more annoying to me than to the kids). Both the 1.5 and the 0.75 "wore out" like this. We messed it up by trying to go off of antibiotics this past round, so are now half-way through another high dose IVIG to "re-boot" again (first half yesterday, second half Monday). However, after day one everyone is already doing great again and we're scheduled for the next in 3 weeks, so I'm debating whether or not to go ahead with the second half of the dose. I mention all of this just because I'm guessing that at high enough doses of monthly IVIG, prednisone may not be necessary once your son stabilizes. Based on posts here I'm guessing that less than 0.75 g/kg may not be enough to do the trick, and 1.5 g/kg or more generally does do the trick.

Breastfed 22 months for each, no formula. Breastfeeding should help with immunity since maternal antibodies are passed through the breastmilk to the baby. Unfortunately, I don't produce proper antibodies to strep (or probably other things) that I could pass down to them, and they got strep early (while still breastfeeding). I also apparently produce auto-reactive antibodies (tested positive for those in Cunningham and other studies), even when I feel fine -- probably because I have an adult BBB that's not so susceptible to interleukin. I have wondered if each of my kids spent 2 years getting my rotten auto-antibodies in their systems as well as some good ones. I had strep while breastfeeding so in principle I could have produced antibodies that attacked my KIDS' brains. Bad mommy ;-)

Emerson, please don't lose hope. When I was 15, I was where you are...but it was 1982. I had terrible problems with eating, and ultimately ended up in the hospital from the results of that. Getting food down was horrible. I chewed and spat plenty. I actually think there is something physical to it, not just psychological. Everyone is right; it's serious. That having been said, it is also temporary. I also had PANDAS from a young age, and it got MUCH worse in my teens. I never got antibiotics til I was 18 or 19. After that, 80+% of all my PANDAS symptoms stopped (the eating stuff stopped 100%). Over the next few years after that, it eventually got to be 99+% better, and it's held there ever since. You are on the way to getting help and it may take some trial and error, but the help will ultimately be effective...so try to take care of yourself for now, and not to panic about the future. My advice, for what it's worth: if you can't eat solid food now, just try to relax and find good liquid ways of getting plenty of nutrition. You will get treatment and that symptom will go away. Someone already suggested it, but please make sure that you are taking plenty of Advil. In the meantime, I would suggest that you also get yourself some EnsurePlus or Boost, or some other kind of full-nutrition smoothie type thing that will go down ok. I found that I could freeze the stuff and take small spoonfuls, and they'd slide right down. You are under stress and your body is suffering from some kind of infection, and you need your basic nutrition, however you can get it. I'm sure you could find something like this at whatever grocery or drugstore you can get to. These days I think it's perfectly socially acceptable to have some sort of energy drink instead of a solid lunch, so you may also be able to "eat" with your friends that way, since it sounds like that's important to you. I know this isn't a good long-term solution, but I think you need to set yourself up to really take care of your body's needs until you get good treatment, at which point things will get much easier. Why not call and make a doctor's appointment yourself? I know that you shouldn't have to do that, but if you did make an appointment, would your parents take you? If not, would you have another way to get to the doctor? Teenagers can go to a doctor without a parent - I always did it that way. The hang-up might be that I think your parents need to approve any medication you get. This was a problem for me - my parents didn't want me taking anything at all, so I couldn't really get any treatment til I was 18.

Dr. B recommended only 3 months of antibiotics following IVIG for my kids. However, I don't know if this is his usual recommendation. Ds4 only got PANDAS as of the one infection he caught last fall and couldn't get rid of, and prior to that same (presumably) infection, ds6 did fine for years on just a couple of courses of antibiotics a year when he got sick -- so it seemed reasonable to think that if they could kick that one infection, they might be ok off of ab for a while. The immunologist we see now also agreed to do a trial off of antibiotics, but when the kids "failed" the trial after only 7-10 days, he said that we would just leave them on indefinitely from here on out and not try another trial off. He said that in his experience with PANDAS, there are cases where it's worth a trial off of antibiotics because a small minority do fine that way after IVIG (and we had reason to believe we might be among that group), but that in the end, almost all PANDAS kids need ongoing antibiotics. Because of the failed trial off of antibiotics, we are now doing another high dose IVIG to get them back on track (in fact, they are being infused at this very moment). This isn't too bad since my kids get IVIG regularly and we're not paying much out of pocket, but particularly if I had been paying out of pocket or had to travel for this, based on what I know now I would not have risked doing IVIG at all without assurance of ongoing antibiotic treatment.

p.s. That's interesting that Aetna removed the page with the info about PANDAS. Before I got my immune tests, Aetna's written policy on-line would have covered my IVIG. However, after I got my tests done and they denied it, I went back to find that page again in order to show the representative that I should have been covered, and the page had been revised to criteria that now excluded me. The page had a revision date, coincidentally, of the date right after they received my claim for precertification but before I got my denial, and the old page had been completely removed. Unfortunately, I didn't have a hard copy and my bookmark just took me to the new page. Apparently they are allowed to change their criteria at any time... but this situation smelled bad to us.

Did you child go through the regular Prevnar vaccination schedule as a baby/toddler? If so, and if the numbers are still that low, he/she would be considered to have failed Prevnar. I think that if this was already done, the experts have ways around doing the vaccine again. Of the four doctors we saw, one insisted that there was no way around vaccinating again to prove the the immune system wasn't functioning, and the other 3 (all more familiar with PANDAS) felt that that part could be negotiated. Normally, after 1 year of IVIG treatments, Aetna requires that kids be revaccinated to see if their immune systems have "healed" so that treatment can be discontinued. I already told our immuno that I won't be willing to do that challenge on my kids next year, and he agreed that it was inadvisable for PANDAS and seemed to feel that if Aetna approved it the first time then he could negotiate his way out of revaccinating. That would mean, however, that we'd have to "wait and see" if they got more infections in order to qualify for additional treatments. So far, my kids have only gotten PANDAS symptoms in the context of clear and visible sinus infections, so this doesn't worry me too much for now.

Aetna really goes by the numbers. If he has at least one subclass deficiency and failed to respond to prevnar, then he should get IVIG. That's all my ds6 had - his total IgG was just above the bottom of the normal range. He had had recurrent/persistent sinus infections for the 6 months prior to IVIG, but not before that - no long history of infections. We didn't even mention PANDAS to Aetna. I, in contrast, have had constant infections for a long time and fail pneumovax, but all of my IgG subclass levels squeak into the normal range, so I was denied. Dr. B's office told us they would have the approval within 4 days, but it actually took over a week. The above having been said, Aetna is VERY stubborn about their network. I went around and around with them trying to find someone in network who would treat the kids locally, and when I didn't find anyone in network locally (and Aetna didn't either), they just said that I had to either travel or go out of network. I even got a rare disease case manager, had interviews with Aetna folks on the phone, and jumped through a bunch of hoops, and still they didn't budge. They told me that I could go through a process to "prove" that Aetna didn't have in-network local MDs who would treat the condition, but even if I did prove it, I would just be doing the service of informing Aetna of that fact; it wouldn't change my coverage. That's how we ended up traveling to Dr. B - he participates in Aetna, and it was cheaper to fly out there than to pay for 50% of the IVIG for two kids...and even that only after a very large out of network deductible. That having been said, we did end up eventually finding 2 doctors in California who have prescribed IVIG for the kids. We got the initial high dose with Dr. B and have been following with medium-dose (0.75 g/kg) in CA. Dr. McGhee at UCLA has expressed willingness to do higher doses for PANDAS and he participates in Aetna, but my kids have done quite well on the medium dose so we haven't raised it yet. One trick with Aetna that we figured out the hard way: at least with our plan, when we got IVIG at an infusion center, we had to pay 20% for both the drug and for the administration - which for the two boys, was a lot of money to lay out each month. HOWEVER, now that we get it administered DURING our doctor appointments at UCLA, it counts as a procedure done during a specialist visit, and we only pay the $40 specialist visit charge per child for the whole shebang -- and the deductible doesn't apply. We preferred the infusion center (more local) and I argued with Aetna that it had to be cheaper (for them) for us to do it at the infusion center than for us to have to see the specialist each time -- so why were they incentivizing us to go the route that was more expensive for them? But they stuck to their guns.

My ds4 was never very anxious, but my ds6 had some anxiety and it went away entirely after IVIG. Even what I considered to have been normal-range 6-year-old shyness around unknown adults went away. However, we went off of antibiotics 10 days ago, and anxiety started to creep up again (we started antibiotics again yesterday). So for him at least, it seemed like the combination of IVIG and continued antibiotics gives the optimal result. I'm just hoping that we regain ground over the next day or 2 and didn't screw up with the trial off of ab.

We have Aetna, and they cover IVIG for both of my boys because of their immune deficiencies (after we jumped through a bunch of hoops), but wouldn't cover my immune deficiency. Even though I meet diagnostic criteria for a primary immune deficiency, I don't meet Aetna's criteria. Dr. B appealed and submitted me as "other immune disease" due to long history of immune complex issues, lupus reactions, lots of weird infections, etc. - if ever anyone had documented immune issues it's me - and they still denied it. I think Aetna is stingey with IVIG... but if you do get it covered, please let us know how! My boys still seem to be very dependent on it each month and since Aetna demands that they go off of it after a while and then re-test, I'm afraid that their numbers will squeak out of what Aetna will cover and then we'll be stuck with crazy bills.

p.s. I know what you mean about the difficulty of knowing if they're being "little turds" or if it's PANDAS. My kids have been well enough for long enough now that when ds6 sassed me once too many times last night, I took away his TV time until Wednesday (after warnings) with little hesitation. Now that he's obviously sick this morning, I feel kind of guilty about that because I doubt that he could have helped it. It's hard to know what to do, though. I think it would be very confusing to the kids if we disciplined them when we thought they were doing fine but not when we thought they weren't, especially because for mild PANDAS, it's so hard to tell the difference and the kids would be smart enough to try to manipulate our persceptions. But of course, we can't go through their childhoods not disciplining at all when the behavior exhibited is mean/harmful to another person (in my opinion). So that leaves us with disciplining even when the cause is PANDAS. I guess our general approach is to discipline enough for turd-like behavior to send a message that acting out toward others is unacceptable (e.g. time out in room, loss of TV time, temporary loss of any toy that's used in a conflict, etc.), but not to discipline TOO harshly (e.g. I haven't yet canceled playdates or significant privileges, etc.). I personally haven't disciplined at all for PANDAS behaviors that don't harm others. I sure hope that this is 100% under control by the time they are teenagers - seems like the discipline part would get much harder then.

One update this morning - now that he's awake today, we can definitely see that ds6 is worse, now his 10th day off of antibiotics. He looks sick, he's sniffling, and he claims fatigue and "mad feeling" (looks more like mild depression to me), so I do think he's seeing strep again. We're going back on antibiotics today. So I would call this, for ds6 anyway, a failed trial off of antibiotics. I put a call in to Dr. McGhee to see if we should switch from zith to augmentin. Ds4 still seems to be doing fine for now. We have not tried charcoal or clay, but occasionally do epsom salt baths. After each of the last 2 IVIGs, only one child had one bad day each time (and the other child had smooth sailing), so I didn't think we were herxing much anymore at that point. Now that ds6 is sick again, though, I wonder if he'll have a hard time after Friday's IVIG.

I think what happens after IVIG is complex. High doses of IVIG are antiinflammatory, so help shut down the permeability of the BBB. At the same time, IVIG is immune supportive (of course), so also helps the body fight infections...hence die-off. We saw immediate improvements after IVIG, but also brief intervals of worsening. Great energy for a while, and then short bursts (like 30 seconds) of terrible behavior. For us, this lasted something like 3 weeks. We also saw bed-wetting during this time, which normally only happens for ds6 during a bad PANDAS episode. We were told that with subsequent IVIGs it would even itself out, and that seems to be true. After their second and third IVIGs, which were the lower dose (0.75 instead of 1.5), the "turning back" was much briefer and more subtle. Ds4 had one really bad day (mood, crying, OCD-fussiness) right after the 2nd dose but ds6 was fine, but then ds6 had a really bad day after the 3rd dose. After each dose, we see bed-wetting for a few days. This is a bizarre symptom to me because we see it after IVIG even when behavior/mood seeems totally normal...but of all of the PANDAS symptoms that might flare, I'll take this one! Throw on a pull-up, problem solved. As for antibiotics, we were told by 3 doctors, one of which is a PANDAS "expert" to go 3 months after starting IVIG and then do a trial without. We are now about 10 days into our trial without. We are seeing very slight deterioration in ds6 over the last day or 2, but it's hard to evaluate because that always happens in the couple of days leading up to the next IVIG (which is this Friday). Same thing happened even on the zith. If he doesn't perk up again immediately following the next IVIG, I think we'll go back on the ab or rotate to Augmentin. The one thing that's making me nervous about this couple of days of deterioration, as opposed to what we saw in previous months, is that I am having an annoying eyelid twitch in my right eye. This happens to me periodically (rarely), but when I was going through years of our medical records a couple of months ago, I noticed that it has only happened to me when someone in the family had strep. That makes me nervous that ds6 still has underlying strep and that it's flaring now that he's off ab.

In my opinion, there is definitely a genetic component, though probably several different genes for different families. The relationships between HLA haplotypes and psychiatric conditions has been studied before and associations have been found. I also believe that there's something going on with PANDAS and chromosome 22q. If you really want to jump into hot water, abandon google and start "googling around" on pubmed.org! Just for a sampling, here's something about HLA B27 and Strep: http://www.ncbi.nlm.nih.gov/pubmed/325206 and here's something about association between HLA B27 and psych conditions: http://www.ncbi.nlm.nih.gov/pubmed/6877172

When I was an anorexic kid and liked the frozen stuff, I think part of it was sensory - I was very particular about food temperature overall, needing things either very hot or else freezing for them to be acceptable in my mouth -- but part of it also had something to do with pacing. Eating frozen things, as I mentioned, slowed down the process and prevented the unbearably uncomfortable "stomach feel" of the food, which was my major problem. (I never had dysmorphism issues). I also ate extremely hot soup. I remember nuking it several times per bowl to keep it hot enough throughout the meal. Bizarre to recall all of these details. Dut, my kids are doing well, thanks for asking. They are still doing 0.75 g/kg IVIG monthly (after the original 1.5 dose), and are now off of antibiotics altogether. Just today, ds6 became crabby (using snippy tone of voice with me, bugging ds4, etc.), and mentioned that he didn't sleep well last night. His IVIG is due on Friday. We're having no OCD or tics or sensory stuff, or any of the other "weird" neuro stuff (like writing in mirror image, which both used to get, or leg-dragging sensory stuff). We've seen huge gains in physical coordination for both kids, reading and writing (for ds4), and improved digestion for ds6. However, we still have some mood deterioration right at the end of each IVIG cycle. (Although this time, ds4 seems to be holding just fine so far.) It's not bad -- and ibuprofen helps -- but they are SOOO good for the first few weeks after each IVIG that it still really bothers me to lose ground at the end of each cycle. I have to admit that it's disappointing, though not surprising given their deficiencies, that they are still clearly dependent on frequent administration. We are moving to doing 0.75 every 3 weeks for the rest of the summer since it fits our schedule best and we want to see how that works, but then we will switch to a higher dose less often again once the school year starts. Dr. McGhee at UCLA seems very flexible and committed to figuring out what works best for them, so I'm optimistic that we'll be able to optimize the approach eventually. Ds4 tolerates the whole thing so well - doesn't even flinch at the needle stick - but ds6 screams bloody murder at the needle and I hate putting him through it. Neither has been having side effects from the procedure so we'll be speeding it up from here on out, so it should be done in less than a couple of hours.

When I was anorexic as a kid, I lived for quite a while on FROZEN Ensure Plus -- funny that cold items and liquids were mentioned by those above because that's what worked for me as well. I couldn't stand drinking the stuff - the texture or the taste or the "stomach feel" -- but somehow freezing it (like in a popsicle freezer or in a cup) and letting licks and small bites melt in my mouth was very acceptable; I actually really liked it. I couldn't bear anything that made me feel "full" but a steady stream of frozen EnsurePlus over the course of the day felt good. And that stuff has a ton of calories plus protein, vitamin, minerals, etc. I actually knew some anorexics who lived literally for years on that stuff with nothing solid.

Leading the News Administration Announces New Rules For Consumers To Appeal Health Claim Denials. USA Today (7/23, Young) reports, "Consumers will get new and expanded rights to appeal denials of health insurance claims under federal regulations released Thursday." These "rules, part of the nation's new healthcare law, will make it easier for consumers to dispute an insurer's decision within the plan and require coverage to continue during the appeal, said Phyllis Borzi, an assistant secretary in the Department of Labor." Meanwhile, HHS announced on Thursday "a $30 million grant program for states to create or strengthen programs that help consumers find insurance and challenge claims denials." Jay Angoff, director of HHS' Office of Consumer Information and Insurance Oversight, "said the rules and grants will help end 'some of the worst' insurer abuses: 'For too long, consumers have been forced to fend for themselves.'" Yet, "because health insurance and President Barack Obama's overhaul law are both complicated, the new federal safeguards will not immediately apply to most Americans with private coverage," the AP (7/23) reports, explaining that "first, consumers will appeal directly to the insurer. If they're denied a second time, they can go to an independent reviewer whose decision is binding." Notably, "health plans must pay the cost of outside appeals, and if they're overruled, they must cover the disputed claim in full." Consumers also have the right to appeal "if their coverage gets canceled." The Los Angeles Times (7/23, Levey) reports, "For many Americans, few experiences with the healthcare system are more frustrating than a rejected claim from an insurance plan. Rejection notices are often unclear, as are the procedures for challenging them." The new rules are "designed to simplify the process and expand consumers' rights," though "it's difficult to say" whether the rules will "make a difference." Still, "many consumer advocates -- including Consumers Union, Families USA, the National Partnership for Women and Families and the AARP -- believe they provide important new protections." The Hill (7/23, Lillis) reports that though they "won't apply to 'grandfathered' insurance plans -- those existing when healthcare reform became law in March -- the administration estimates the program will benefit 41 million Americans next year and 88 million in 2013."

I was recently thinking about this and looked at Amazon to think about format. I found the following about ADHD, compiled by surveys. Has anyone read this book? I wonder if the publisher/author might be interested in a book on another disorder, but using the same format. The ADHD Parenting Handbook: Practical Advice for Parents from Parents [Paperback] Colleen Alexander-Roberts (Author) 4.7 out of 5 stars See all reviews (12 customer reviews) 12 Reviews 5 star: (9) 4 star: (2) 3 star: (1) 2 star: (0) 1 star: (0) › See all 12 customer reviews... ________________________________________ From Booklist Attention deficit hyperactivity disorder (ADHD, aka ADD) affects a huge number of children; the estimates of experts are truly impressive--five million school-age children and 5 to 10 percent of the general population. Subtitled "Practical Advice for Parents from Parents," here's a book filled with the experiences of hundreds of parents of ADHD children gathered via surveys by the author. ADHD, a condition marked by distractibility and impulsive and related behavioral symptoms, is defined briefly, and insight into the diagnostic process follows. Then, the author focuses on management techniques that a family and child can utilize to survive everyday life--morning activities, homework, peer relations, summer-vacation blues. Tips from educators and other professionals are tucked in, especially throughout the lengthy chapter on school and teachers. Appended, along with a bibliography, is a list of ADHD organizations. Denise Perry Donavin

This is so great to read! I'm so happy for you all.

We also used Crescent one time (they are an infusion center chain like a Coram), and they were really, really great. We get it covered by insurance for immune deficiency, but I did note that the total bill was less than $2000 per child, all in (and didn't seem to depend much on dose). (For comparison, at Dr. B's, the bill had been $7800 per child.) And Crescent negotiates, too. Not sure how far they go with that but we ran into an insurance tangle where we expected only to pay a $40 copay based on previous experience, but it turned out that the insurance only covered 80% since they weren't seen by a doctor during the infusion. When I whined about it a bit, they immediately jumped to letting me know that they had a program to forgive a portion of costs in cases of financial challenge to help people afford IVIG. We don't qualify so I don't know how far they go with that, but maybe that will be useful info to someone out there. They also had the best nurses and most comfortable setting we've encountered. My kids still wish they could go back there since the nurse was so good at the IVIG insertion, she made them so comfortable, gave them presents, bought them McDonalds for lunch, etc.- but for us, it's 10x more expensive than getting it done at a doctor's office.

Joan - so sorry that you and your son are going through this. It so happens that I asked Dr. McGhee about this this morning. My kids are supposed to be on monthly IVIG, but instead it has been irregular for various adminstrative reasons (hopefully done with now). It seems like every time we get way too far out from the last IVIG - just a couple of days before the next one, they start to get symptoms again (mild, but noticeable), then get better with the next IVIG. I asked Dr. McGhee if this could be because they still harbor strep or are getting reinfected any time their levels get low. He said that both were possible, but that there was no way of knowing. No way to read the titers, etc. - I think he said for at least 3 months post IVIG treatment. He also said that there was basically no way of knowing what might be due to reinfection or continuing infection, and what might be due to some other immune phenomenon that accompanies the treatment. He said that we'd just have to make our best judgments clinically - try things and figure out what worked best. Given that my kids are immunodeficient and have had chronic strep, to him the first thing to try would be increasing the frequency of IVIG. Dr. McGhee also said that we'd need 3 months of doing things in a steady way (unlike we have been) to see what we had at all, since it can take the body that long to adjust to IVIG treatment. If we still see the pattern during the last 3-4 days of every month after that, we'll push the IVIGs closer together (ugh). As much as I lament that my kids have immune deficiencies and may possibly have to go through these treatments long term, the one upside to it is that IVIG and antibiotics are not optional for us. It's still hard to be early on the PANDAS learning curve , so I know that it must be harder when none of the treatment options are "standard" or fully understood.

I've been taking this now for a couple of months, but not for OCD. I was getting desperate about these constant infections I was getting and our insurance's denial of IVIG for me, so I went to the shop of a friend of mine who's an herbalist and asked her to set me up with anything and everything she thought could boost my immune function without exacerbating autoimmunity. She gave me NAC and a couple of other things to take just when I'm sick. Since I've started taking it I haven't been sick, which believe it or not, is very good for me even though it hasn't been that long. I feel great too - but generally I feel great as long as I don't have an active infection, so that's not surprising. I don't have OCD or anything like that so can't comment from that perspective, but I'm going to keep on taking the NAC.