momto2pandas
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Posts posted by momto2pandas
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Both of my kids have had monthly IVIG covered by Aetna, but both have immune deficiencies, one CVID and one IgG subclass 3 - and lots of documented chronic & recurrent infections. I don't think that PANDAS has even been mentioned in their applications.
We are switching to United this month and I'm hoping they continue to be covered. United says in its policy on IVIG that it covers use for PANDAS, so I'm puzzled as to why it would ever be denied. Do they only approve it for severe cases?
I applaud what you're doing!
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It was one of the 14 different courses of antibiotics we tried to clear active strep last year before figuring out that our kids were immune deficient. They did seem to improve while they were on it, but like with all the other drugs at the time, they got sick again the minute they finished the courses. I guess in that way it was no better and no worse than the other antibiotics they tried.
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One other thing. I'm not getting a 100% clear picture, but it sounds like your dd's episodes are sudden and cataclysmic and resolve pretty rapidly too, if she was really "coming back" by the time you got to the ER. Could she be having some sort of seizure activity? I had episodes like that when I was around 20, and it turned out that my thyroid was super duper low at that time - so low that I needed to be titrated up to a full replacement dose to get it back to the normal range. Maybe they'll check that in the ER. In the meantime, Depakote put a speedy end to the episodes. I was able to use it almost like aspirin for a headache, to deal with it just when it happened.
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So sorry your DD, and you, are having a rough day. Sounds like you did exactly what you needed to do, though I'm sure it was hard.
I don't know where you live, but our pediatric immunologist in LA has been doing a very good job of managing my boys' immune deficiencies and PANDAS. We've discussed SCIg with him a few times, because we like the idea of the convenience, but he's kind of against it for kids with immune deficiencies and PANDAS because he says that with SC, you can't get the peak levels that you need to "turn off" the autoimmune response. Even with the ordinary doses of IVIG used to treat immune deficiency (typically around 0.5 g/kg), it's hard to hit these levels, so we do 1 g/kg. SCIg can sometimes be better for keeping Ig levels consistent over time to better fight infection, but he feels that the best solution to that problem is to increase the frequency of IVIG, instead of moving to SCIg, if PANDAS kids are still getting/keeping infections. So when my kids have been actively fighting infections we've done it every 3 weeks. Lately we've been able to back off to monthly. He likes to keep them on penicillin prophylaxis because it's got a relatively narrow spectrum, so that we can save the bigger guns (Augmentin) for if/when we need them, but if they actually get sick we switch temporarily to Augmentin, and we switch temporarily to clindamycin for dental issues (tooth loss/dental work).
I hope that things turn up for you quickly!
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Two brothers, both immune deficient and PANDAS. One was diagnosed with both immune deficiency and PANDAS, and treated with monthly IVIG and abx, starting at age 3. The other was diagnosed with PANDAS at age 4.5 and treated with courses of abx (not prophylactic) but was not diagnosed with immune deficiency until age 6, at which time he also started treatment with monthly IVIG and prophylactic abx. Son treated since age 3 has had complete remission of PANDAS symptoms with no blips that I can recall. Other son had complete remission of OCD with initial antibiotic treatment, then resolution of all other symptoms with IVIG treatment, but still has occasional short and very mild blips of eye tics and crabbiness with tooth loss or infection. Both are 8 months into treatment now.
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The homeschooling is a great idea. For a different reason (not PANDAS), our school district supplied us, at no cost, with a self-paced, on-line curriculum with a bunch of different courses for my second grader. It's a great program. What I like about it, beyond the fact that my son loves it (it includes lots of "fun" learning stuff), is that the program does 95% of the teaching (it would probably be more for an older child) and keeps track of what he's mastered and what he needs more work on, so it takes most of the burden off of me. And there are so many interesting courses on it that if it's not a good day for math, he can do some lessons in languages, science, history, spelling, or whatnot. If your son likes academics (even some) but does not want the pressure of keeping up in a brick-and-mortar classroom, something like that might be a good idea.
Re exercise, how about running? That's great exercise for burning off steam with little germ exposure, and will help keep him in great shape for just about any sport he may want to get back into. It's also a sport where it's easy to measure progress so it helps with a sense of accomplishment. This may sound cheesy, but I also get a lot of "mileage" out of running with an athletic pup - it makes the dog so happy, it's hard not to feel good about the whole thing.
Re. prednisone, in my experience the first 2-3 days of it can be hellish, but around day 3 I get a breakthrough. I've only done a three courses of it, ever, but you may want to give it a couple of days before you give up on it.
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Joan, I don't know if this will help, but for me, the mid-teens were the absolute worst. I don't know how either I or my parents made it through, but it did end, even without the kind of recognition and treatment that we have these days. Looking back, I liken my childhood and adolescence to pregnancy and then childbirth, respectively. I remember right before my first son was born, I had all of these feelings about just wanting to NOT give birth. Not that I didn't want my son, just that I didn't want to go through the birth process (we had reason to believe that he might not survive it). My mind was constantly, constantly spinning trying to find a way out of going through it, but being born is an inevitable part of the progression of a person's development, and no matter what I did or how awful it could end up being, this baby had to come out of me...so I just hung in there, prayed a lot, went to another place in my mind, and eventually it was over, and luckily everything turned out fine in the end.
I think of my own mid-teens the same way. My childhood was kind of a lumpy, awkward, and uncomfortable process PANDAS-wise, but not without its great pleasures, like pregnancy. Then my adolescence came and it was the worst kind of unbearable PANDAS "labor" - full of relentless pain and blood and sweat and tears and a constant desire for it to be over - but it was of course an inevitable part of the progression of my development, the "birth" of my adult self, no way around it except through it. But then, when the "labor" was over, I became an adult, and even the discomforts of "pregnancy" eventually went away (and I was left with just periodic mild "cramps"...to stretch the analogy too far!)
This is probably not of any help in getting through the day, and may not even be an analogy that you or anyone else can relate to, but whenever I see these stories of struggling teenagers, I still think "that's labor" in PANDAS, the painful process of birthing an ultimately healthier adult. I never feel that these kids are actually getting progressively sicker - I just think that they're going through a rough transition to a better place, and I feel confident that with time, that stage will pass and things will be easier than they have ever been before.
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I am so happy for him, and for you! Over the coming years, I think he can look forward to the kiddie coaster turning into a jog over rolling hills. Gotta work a little harder up the hills, but all the while knowing that you'll coast down again before long.
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I don't think I can fill out this poll properly since my kids have had both monthly IVIG and antibiotics and I have 2 with slightly different results (so far). Both started IVIG in April. Ds4, who was 3 when he started IVIG, has been 100% recovered of PANDAS, as far as I can tell...for now. He has had blips of poor energy when he's gotten an infection (guess that's normal) but I don't recall having seen any OCD or tics since the first month after he started IVIG. Ds7 has also done very well - 100% almost all days, though he is more prone to "blips" when he gets infections, so I wouldn't call that 100% recovered/cured, or whatever. Also,right now he going through another round of losing baby teeth, and is having a bit of a hard time. This happened when he first lost baby teeth before he started treatment, and it was MUCH worse then. This little episode he's having now amounts to a couple of tics per day and a couple of ugly 15 second outbursts per day, no OCD. Not bad, especially considering that he also just finished a week of hard, late-night Nutcracker performances on top of school, but not 100% either. I just can't wait for this pair of teeth to fall out completly and heal up....my expectations have gone up, I guess, and at this point I get exasperated seeing any PANDAS at all.
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So glad to hear that you're seeing good things! I hope that those good things continue to grow.
Re. SSRIs, in the past when I had periods of depression associated with PANDAS, I found very low doses of Zoloft or Celexa to be very helpful. NOT fluoxetine/prozac - that was far too "activating". I don't know if this would be true for your son, but for me, the trick was not only to use very low doses, but to go off of it once I got my bearings again, usually a few days to max a few weeks, because otherwise I would start to mood cycle. This was a known phenomenon among some of the psychiatrists I worked with at Columbia - that the anxiey folks with autoimmune issues would eventually start cycling on SSRIs. Just something to keep an eye out for.
Incidentally, Wellbutrin was effective and did not appear to lead to such cycling.
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My kids are 4.5 and 7. The 7 year old had PANDAS for at least a couple of years, mildly and intermittently, before the chronic infection that led us to find out he was deficient and needed IVIG. We had noticed PANDAS in my 4 year old, again mildly, only a few months before he got IVIG, and around the time we started to test for immune deficiency...but he had been sick with recurrent/chronic sinus stuff ever since he was a baby. Anyway, neither had had a very long or very deep history with PANDAS before we started IVIG, and we didn't start IVIG for PANDAS, but rather because they had chronic infections and immune deficiencies. They get IVIG every 21-28 days - the schedule is really 21 days and that's ideal, but sometimes for scheduling reasons we have to stretch it out a few extra days. Their immunologist does take blood for monitoring periodically, but I don't actually know the numbers or exactly what target he's after. He seems to be going more by their clinical state. If they're doing well, we continue as is; if something comes up, we tinker.
Ds4 is expected to need IVIG indefinitely due to CVID. I still hope that some day he will grow out of it since he is so young, but with his numbers, I guess the stats aren't promising. We were hoping that ds7 would be done with the treatments by now since his deficiency is not as bad as his brother's, but we tried to extend the interval between his treatments last month and he got a sinus infection before the 28-day mark that wouldn't go away, so we had to start up again so that he could clear it. Based on that, I think still needs it, too.
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We are doing about 0.9 g/kg. So that would be high for immune deficiency (which they have) and low for autoimmune disease (which they also have). I would consider it "middle" dose all in all. I couldn't be more thrilled with the results.
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I also wonder if this may be different for kids with vs. without immune deficiencies. When we got his test results early this year, we noted that my littlest guy basically doesn't make antibodies to much (he has CVID), so I wouldn't be surprised if he didn't make antibodies to IVIG either. My older is also immune deficient. We're still doing IVIG every 3-4 weeks, and still are 99.9% symptom-free for PANDAS. Actually 100% almost all days.
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I have always wondered if the giftedness has something to do with excessive permeability of the blood brain barrier, just permeability of the brain in general. I think any allergist can tell you that kids with allergies - basically those in a constant state of inflammation - tend to be smarter and more creative than other kids; this is a known finding. According to the textbooks, highly gifted children are also more sensitive to e.g. food dyes, in particular Red40 has been mentioned - and we know that they are sensitive to sensory stimuli - which makes me wonder if in general, the brains of highly gifted kids aren't as "well sealed" as those of other kids. This might make them more permeable to toxic stuff (including antibodies), but also to information, essentially. I also suspect that this set of children build more connections across the left/right brains than do most. This is another area where I have a spiel that I could go on and on about...
I do think that the association is also why these genes are prevalent in the population (in my opinion). The adverse effects of the genes mostly affect people during the childhood (non-reproductive) stages, and assuming that they make it through those stages by hook or by crook, many go on to be very successful and socially adept adults who reproduce just fine.
And yes, certainly for me, jumping several years ahead sure helped me to bounce back after I had to spend 2 years in the hospital as a teen - I just wound up going to college 2 years younger than my classmates rather than ridiculously younger. I think that the IQ boost helps with the "by hook or by crook" asepct of what I was talking about above, too. I have noticed that even my young kids have an amazingly mature perspective on their conditions and treatments.
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Wanted to mention that this happened to my grandmother. She had anorexia nervosa as a teen, then various episodes of anxiety disorders on and off throughout her life...and a million semi-chronic infections, the whole shebang. At around age 82, she had a sudden-onset episode of anorexia nervosa again, for the first time in something like 70 years. One has to wonder...
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Oh yes. I found it very hard to explain to doctors/teachers that I thought my son might be impaired when he was testing at least 4 years above age/grade level. Luckily, his teachers always saw the variation in his ability over time, so they got what I was talking about. This year, after having gotten IVIG since April and staying pretty much healthy, my 6-year-old was tested during the first week of school and was found to be close to the 8th grade level (7.6) in his weaker academic subjects, higher in others. That makes about 6 years ahead of grade level, so he's jumped up a couple of notches. His IQ tests were apparently the highest ever seen by the testers for our county. We've been thinking about applying to Davidson but haven't done so yet.
My 4 year old is also at the top of his class and has been reading, etc. since 2, but we have never had him formally tested.
I was like that too. Skipped 4 grades, first in my class at Harvard. Psych would not tell me my IQ as a kid, just that it was the highest they had seen in 20 years of testing at Princeton U. In fact, they figured the IQ must be the reason I was "crazy" as a kid, that a mind like that essentially couldn't function normally. Believe it or not, part of their strategy to address my psychiatric issues was to give me instruction, as a teen, in "dumbing down" in order to "assimilate better in society". My parents probably spent several thousands on that BS.
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Glad you're seeing some results, but sorry about that lingering compulsion! Maybe it will take just a little more time to get rid of that one habit?
One thing I did want to say about the "mania". Some people, and in my (research) experience it's been the ones with autoimmune issues, respond to repeated use of melatonin with hypomania or mood cycling. You may want to look that up. I think it's actually contraindicated in people with bipolar issues. So maybe one thing that's happening is that you're seeing a result of using melatonin more often after the IVIG. It actually does that to me. When I used to travel overseas every month, I loved to use melatonin to fight jet lag (it's GREAT for that) and to help me sleep outside of my usual schedule. HOWEVER, I'd have to limit use to a couple of days per month, else it would launch mood cycling. Something to think about.
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I would really like to see if we could get Dr. L and maybe Swedo to make a trip to the west coast to do some Grand Rounds, or interactive seminars and discussions of cases at major universities, so that we can get at least Stanford, UCLA, UCSF, and those kinds of places to be centers of PANDAS excellence...or at least build the relationships with east coast docs to become that way. We've had a great experience at UCLA; my kids have been symptom-free with very little blip for several months and Dr. McGhee seems to get PANDAS, but my kids are straightfoward strep+immune deficiency cases, and I don't know if anyone there would know where to go with it, or how to push it through insurance, if they ever got complicated or if they had not been immunodeficient. In any case, our doc at UCLA has been interested and receptive, and if someone came out to UCLA to give a PANDAS seminar, I'm guessing that it would be well-attended by a receptive audience. They could even invite local pediatricians and other docs who were interested.
I have to believe the same could be true at Stanford. There are doctors there who have helped people, I think. Heck, I was diagnosed and treated there by Dr. Ketter before PANDAS was even named, and he was fascinated by "the case" (I had called him for a referral, but then he wanted "the case" for himself) - so there's at least one doctor who I think would be open to listening carefully and who would use the information - and he's a department head for adults.
Maybe we could raise funds for a little road trip, if the east coast docs are willing? I'd be happy to help work on assessing willingness/interest on the CA side and organizing and scheduling the seminars. I think having good centers in SoCal and NoCal would also be very useful to those in e.g. Oregon, Wash, AZ, Nevada, etc. who could drive out to CA in less than a day. The problem with flying out east for consultations, etc., is that PANDAS can be a moving target, and it's hard to get ongoing treatment on a very regular basis with someone 3000 miles away. It's great to go out for diagnosis and consult, but it's not very practical if you need regular follow-up.
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That bit about the yeast is very interesting. I wonder why that is. I spent well over a decade - probably close to 2 decades - on antibiotics and have only had 2 yeast infections that I can recall...and I wasn't even taking probiotics or anything during most of that.
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I think that there is a bigger issue here, and that is attitude toward and willingness to get treatment. As I mentioned before, and Emerson echoed, there is a lot that underlies that, and I think that the teen years are the time to get to the bottom of it, especially for boys. In my case, as I mentioned, I had an accidental remission, and then I took an interest in the science and that propelled me forward from there. But I think that a bit of "light" counseling would have helped. I would have hated the idea of yet more useless therapy; however, I think I could have used some perspective from a counselor, pastor, support group, or wise adult who understood, just to give me some perspective on how young I really was and to try to get me in the right mindset for management of a tricky long-term illness. I got there in any case, but it could have been easier. I'm guessing there are people who specialize in this, since it's a big issue with many conditions, including diabetes, asthma, and tons of others. During my years in the hospital, I saw plenty of teens admitted who would just throw in the towel on treatment with all of these things and eventually would need to be hospitalized.
I think this is particularly true for boys, who will soon be men, who are notorious for not taking care of themselves medically especially when it comes to stuff that presents with mental/emotional symptoms. I don't get it, but I know it's true statistically, and I've certainly seen it in my own family. As one glaring example, once my kids & I were diagnosed with immune deficiencies, I mentioned it to my father, since he is ALWAYS sick with disabling infections and has skin cancer, which is also a sign of immune deficiency...not to mention that he had RF and PANDAS, and his Mom is the one who had chronic sinus infections and recurrent pneumnoias and RF and anorexia nervosa, among other things.... It is so clear cut, but he won't go to the doctor even just for a blood test to get his immune system checked out. I am guessing that there is a complicated psychology to finding the answer to your life's miseries when you're in your 70's...but on the other hand, he has always been reluctant to look for answers. I see this SO often in men.
Emerson, hang in there, boy do I know how you feel. All I can say is that you'll be surprised, when your symptoms do go away eventually: other stuff quickly fills in for all of the stuff that goes away. I spent so much of my mental capacity on OCD thoughts as a teen, and on thinking about my illness itself and about how to get better, that I wondered what on earth I would think about if ever that 90% of my bandwidth became available. The idea of mental emptiness was more daunting then the mental crap, once I got used to it. But it just fills up on its own; without effort, you find other things to "worry about", regular life stuff like other people, love, work, ambitions, intellectual interests, pets, etc. I had always thought that it would be an active process, that I would need to know how to move on or how to get better, how to fill up my life, but I didn't need to know anything. Once the disease is suppressed, moving on just unfolds on its own. All you have to do is just wake up every morning like you do now, and the rest takes care of itself.
I always wish I could do something for all of these teens...guess I'm only a few years away from having my own PANDAS teen boys.
I wonder if it would be possible to start some sort of on-line support group for PANDAS teens - like a muti-way counselor-facilitated skype or chat or something. I don't know all of the chat technologies enough to know if this could work or has been done.
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I believe that we had rheumatic fever diagnosed back to my grandmother's generation, and interestingly, my grandmother had been diagnosed with anorexia nervosa (among other things), but before that, as you said, it's all vague stories of sickness, craziness, etc - nothing that could be tied directly to PANDAS but all stuff that makes you say "hmmmmm".
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Oh yes, it's always been there. In fact, my family's history is very interesting that way. Once we figured out that my condition was autoimmune and infection-triggered nearly 20 years ago, my father set about interviewing generations of his relatives (big Italian immigrant family) about their histories of infections, autoimmune conditions, and psychiatric disorders, and put it all into a big family tree. Very fascinating histories of dramatic suicides, murder, jail sentences, intermingled with autoimmune diagnoses, rheumatic fevers, loads of pneumonias and other chornic infections, obsessive "genius" success stories, relataives thought to have had special spiritual healing powers, etc...for generations.
Of course at this point, no-one in his family is speaking to anyone else; it's a very interesting picture but not a happy one :-).
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Is it that he doesn't like the idea of the procedure itself, or is it that he still wants to be in denial about the illness? Do you have any insight?
Looking back to my teen years with it, I think one issue that was hard for me to accept about the idea of aggressive treatment (for me it was hospitalization) was that deep down I was convinced that nothing would work. When you go for the "ultimate" treatment, you fear that if that doesn't work, then ALL of your hope goes away...and how can you live with that, as a teen, when most of your life is about hope for your future? As long as you stick with the penultimate treatment, you can have a tool to pull out if you ever get more desperate...and for me that was an important hope to have. Maybe it would be important to frame it as just another tool or another drug.
The other side of the fear is "what if it DOES work?" It really is like being kidnapped. After living with a disease for a long time, especially during formative years, it can be hard to think about life without it. When my issues suddenly cleared after years, as a late teen, I have to say that it wasn't just sudden euphoria for me. It provoked its own anxiety. I wasn't even looking for a quick treatment at the time; I had kind of accepted PANDAS as a way of life. I was treated for TB, and then the OCD/anorexia/depression stuff went away very quickly. As a parent, that sounds like a dream come true, but as the teen going through it, I felt really unmoored for a while. I had clung to all of these routines and compulsions for so long, and all of a sudden I didn't have them any more and couldn't even have made myself do them if I had wanted to, and I felt like a helium balloon that had been cut free. I've always felt like I would have benefitted from some counseling to have dealt with that transition better. At the time my shrinks were like "yay, you had a breakthrough, you're better now!" and I was like "what the F just happened to me, and what do I do now? Can I make it as "normal"?"
If it's the procedure itself, you might want to take him somewhere where they do it a lot to watch it. Where my kids get IVIG, there are teens there constantly getting it. They just come in, do the IVIG for a couple of hours, knit, play video games, or watch TV, and go about their business afterwards. It's not a big scary thing once you've seen people do it. No-one he knows would even have to know about it.
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Yes, particularly given what you describe, I would insist on getting at the question of why the rifampin works so well. Given that she doesn't do great while on it, but does really well afterwards, it suggests to me that it's not some sort of side effect of the drug (like an anti-inflammatory efffect); it's actually the impact that it's having on an infection. As I mentioned, rifampin works on a different category of infection than most of the drugs people take for PANDAS, but evidently that's the one that Allie needs help with (as was the case for me). So it makes sense to ask what else would work similarly that she might be able to take more consistently, or perhaps alternate with rifampin.
Some day I'll have to look more into the TB issue. I don't know if it's TB that was causing my problems, or if by treating the TB, I incidentally was treated for whatever else it was that was causing the problems (either directly via the antibiotics or because my broken-down immune system finally got a break). I never had obvious severe TB symptoms. I was really skinny (but of course I was anorexic), and I was tired a lot, unwell, sick...but nothing that screamed TB. Then once I had the positive prick test, they took a chest X-ray, and what do you know, I had TB. If I hadn't had that routine prick test, I don't know how long it would have been before someone had done a CXR and figured out that I was actually physically ill, not just mentally.
Question about antibiotics
in PANS / PANDAS (Lyme included)
Posted
I haven't been on here in ages - probably a year! - but was looking through some posts and figured I would get on this one to reply. My ds7 had issues with loose teeth, particularly when they would hang out in there for a while. We started bribing him to just yank them out, and that seemed to help. With respect to antibiotics, we consulted some dentists and our doctors and were told that clindamycin was best for tooth-related bacterial stuff. So each time he he's gotten a loose tooth since we figured that out, we've switched to clindamycin for a couple of weeks. Worked great for us.