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momto2pandas

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Everything posted by momto2pandas

  1. For my kids, removing the offending foods from their diets - very strictly at first - did the trick. For my youngest, removing the milk was all it took. For my oldest, he only tested positive for allergy to milk, but removing milk didn't do the trick alone - he still had asthma, eczema, cradle cap, and other allergy symptoms. So I asked his pediatrician to look on the allergy test report for anything else that showed up above the other items, even if it didn't meet the threshold for declaring it a "real" allergy (I have gotten used to doing this kind of thing routinely, as after decades of experience with my own body, my doctors and I have found that the "normal" ranges for many things don't seem to be good indicators for me clinically). The two next highest signals were egg white and wheat, and though the ped told me that the signals were not quite high enough to be "meaningful", I tried taking those foods out anyway, and viola, the asthma completely resolved. I have not had to treat either of them with medication except for during the initial ER visit episodes. Incidentally, I was able to put the offending foods back into my older son's diet after a couple of years of being 100% strict about keeping them out. He has had no problems with egg or wheat since the reintroduction, but if he gets too much cow's milk he starts showing some symptoms, so we give him soymilk as his routine drink. He'll eat the occasional yogurt or pizza without incident, though.
  2. One other potentially important thing I forgot to mention - I have my 5-year-old on these little "Immune C" gummy bears that we get from Target or Rite Aid. (My 2-y.o. is not on them because the dosing is adjusted or age 4 and up only.) In addition to C, they have zinc and echinacea, and maybe some other herbs. I don't know if it's the bears or just luck, but he has been sick MUCH less than his peers since we started using them over a year ago. Mind you, he can still get Strep (and did), but he very, very rarely actually "gets sick", and I think that's helpful. When he got that really bad illness (fever, etc.) & PANDAS episode after our 2-week vacation, we hadn't been giving him either the bears or the Omegabrites for weeks. Who knows if stopping all of his supplements had anything to do with the episode, but I can tell you that next time we take a vacation, we are going to bring everything along, even if that means taking a little cooler.
  3. As maintenance I've only had my kids on Omegabrites and Intrakid. They are not badly affected in general compared to some of the stories I've seen on here, so that's all we've needed so far. When they've "gotten sick" or when the rest of the family has gotten sick and they've tested positive for Strep without actually appearing sick, they've gone on Augmentin, in the past. That seemed to work pretty well. We've had trouble with amoxicillin because the formulations we've gotten usually come with Red Dye 40, to which my son is sensitive (as are many PANDAS kids, from what I've read). Red 40 gives him behavioral problems in and of itself, so that just confused everything. As for myself, I've had a complicated antibiotic history. Recall that my condition wasn't diagnosed as autoimmune until my 20's, so I was never "treated" with antibiotics as a kid, and as an adult, my condition eventually became mild enough that I didn't need anything prophylatically. In my 20's though, I think I was pretty much always on antibiotics, at least or a while. I know that amoxicillin did not help, but I can't remember what did. It was actually my reaction to minocycline (which I was taking for something else, not PANDAS) that helped lead to my diagnosis. I developed a lupus sydnrome in response to the cyclines, with psychiatric symptoms (among others), and all kinds of autoantibodies. The psych symptoms I got "looked like" the ones I had had before, but this time were clearly associated with an auto-immune reaction, and once we saw that so clearly, it was easy to see that other episodes of my symptoms also followed an auto-immune pattern, but in these cases the pattern was generally set off by infections rather than by allergens. I had medical records going back forever, so that helped. Sorry this probably isn't as helpful as you had hoped!
  4. Yes, I've been on a bunch of them. Some of them made me much worse mood-wise in general - I think those were the earlier, high-dose cycling ones. Yasmin, on the other hand, was very helpful in general and evened out my PMS (which used to be very bad) a lot. I don't remember whether it helped with the infection-triggered thing per se, because that wasn't happening too badly at that point anyway, but it helped with the PMS that I used to get very, very badly during my worst "PANDAS" years. At some point in college I was actually treated with progesterone outside of the context of birth control, and I seem to remember that as a quite peaceful time symptom-wise, but I can't really remember details, sorry!
  5. Your son doesn't have Prader-Willi syndrome, does he? That can be associated with precocious puberty in boys (usually the opposite, but sometimes in this direction) and also with some of the other things you've mentioned. Very, very long shot but just a thought.
  6. I have not used steroids on my kids. They both have asthma, but once we figured out the food allergies, it went away so we never needed to get into those kinds of treatments. I have used inhaled steroids on myself, but only 3-4 times in my life. There was no effect on tics, but then again, I didn't really have tics any more to speak of by that time, so I probably wouldn't be able to tell. I live in CA too and have also been having more problems with my asthma this year than in any other year since I was 2. I'm not sure if it's the constant infections I've been getting or environmental things like fires.
  7. Hi, Wanted to answer your questions, as well. I don't know if PANDAS is more common in boys. Generally, autoimmune diseases are more common in women, but among kids, I wouldn't be surprised if boys are more likely to express the kinds of symptoms that lead to diagnosis, i.e. tics, acting out, hyperactivity, etc. (generally boys do express these traits more in childhood mental illness). Girls are generally more likely to experience depression, but depression while "sick", in the absence of other symptoms, probably doesn't look like too much in a young child - might just look like being under the weather! I also can't really say anything about school accommodations. I was never diagnosed as having an auto-immune problem during my school years; that connection wasn't made until later. Thus there wasn't any fear-of-infection issue. So, I kept going to school for as long as I could, and the truth is that I found school so easy that even with my impairments it wasn't a problem...until high school. At that point, I did need special accommodations, but those basically involved testing out of almost all of high school, since I was way ahead of the game academically still at that point. (Yes, I was one of those strange kids who got into Harvard before she needed to wear a bra....) One thing I can say is that I learned good school habits, that still serve me very well. From a quite early age, for example, I always did my homework right away when I got it - never put it off. I did this out of fear more than diligence - I didn't know how I was going to be feeling in 3 weeks when the report was due, so I did it NOW just in case LATER was a problem. Sad but true. This became my strategy all the way until my symptoms basically stopped, in school, in work, etc. Sometimes an episode caught up with me before I could get things done anyway, of course, and those times were very difficult...but "make hay while the sun shines" was an essential part of my coping strategy. As for your arthritis flaring post-partum, I think that most auto-immune diseases can do this. During my first pregnancy (by which time my auto-immune pattern had been diagnosed), my doctors predicted that I had something like a 90% chance of having a huge psychiatric flare post-partum. Luckily, my doctor was one of the Harvard docs who was working on the Omega-3 story, and she put me on high doses of that...and I had no problem post-partum, whatsoever. And no problem after my miscarriage 18 months later, and no problem after I had my second child. The Omegabrites have been so good for me that I give them to my kids, as well (child formulation). Notably, the one really bad episode that my 5-year old had happened at the end of a 2-week vacation, during which time he was not taking the oils (the kids' version needs to be refrigerated, and we didn't want to bother with it on the road). Coincidence or no, I don't know. By the way, I have nothing to do with the Omegabrite company or anything like that; I just swear by their products. The formulation they use is the exact same one that has been used in the clinical studies of the effects of Omega-3's on psychiatric conditions that have been published in the peer-reviewed literature, so in my opinion it has been "tweaked" just right.
  8. Hi, To answer your other questions, I'm not sure why my doctor thought my symtpoms would end when I had a child. He was an Anorexia Nervosa specialist before anyone had ever heard of the disease, and he had treated several hundred by the time he saw me. I was "atypical" in a whole bunch of ways - AN was kind of secondary, I didn't have distorted views of my body, I didn't have the typical psychological or family profile, etc. He told me that he had seen a bunch of others "like me" over the course of his career, and for all of them their whole syndromes basically disappeared after childbearing. I don't think he had a hypothesis for why; it was just his empiral prediction. He made that prediction 20 years before I ever had a child, but I remembered it all of that time, and he was right. My own kids are not on antibiotics. I wanted to treat them with what worked best for me, and that seems to be very effective, so we haven't had need for chronic antibiotics....at least yet...but I will do it if I ever need to. My 5-year-old has had many fairly mild episodes (eye tic, emotional volatility, extreme "fussiness"), but it took a really bad one this summer to shock me completely out of denial about it - I didn't want to believe that he was "like me" in that way. When I took him to the ped during that episode, he was diagnosed right away with PANDAS. My 2-year-old is less obvious - we've just noticed his pattern in the last few months, and it's not nearly as dramatic. I'm kind of hoping that he'll end up with one of those cases that's minimal enough that it would have flown under the radar completely were it not for his brother's diagnosis. Of course, he is still so young, so who knows.
  9. p.s. SSRIs can be very effective for anxiety disorders such as OCD and generally have few side effects relative to the anti-seizure meds. Since OCD and other anxiety symptoms are often part of PANDAS, many physicians recommend SSRIs for PANDAS. My personal experience is that the anti-seizure meds (like Topamax, Depakote) have a better effect, overall, however.
  10. I have not used them on my kids, but I can tell you from my own experience as a "PANDAS", that I was VERY sensitive to them - I needed to use miniscule doses. They worked - and they worked FAST for me, but if I took too much, they made me manic unless I took a mood stabilizer at the same time. It was the experience of my group while I was at Columbia (med school child psych dept.) that some people with autoimmune forms of anxiety disorders tended to "cycle" on SSRIs - sometimes it was subtle, other times dramatic. Caveat: I am not giving "official" medical advice at ALL, but if it were my child, I would go ahead with it but I would ask the MD to start VERY slowly and I would keep a wide eye open for any kind of "hyper" symptoms or cycling.
  11. Interstitial cystitis. Sounds like that to me, anyway. I just looked for a web page that give a description of IC in children and found this: http://www.ichelp.org/Default.aspx?tabid=231. I hope that her physician considered this. Where did you find the information that frequent urination is a symptom of PANDAS? Interstitial cystitis is sometimes associated with other the auto-immune/anxiety disorder complex that I've been studying, by the way.
  12. My younger son has used albuterol (rarely) and I've never noticed any effect. I also have used albuterol periodically and didn't notice any effect on myself, either. I wasn't looking out for it either with my son or with myself, but if it had been a marked effect, I'm sure I would have noticed something. Just our 2 cents.
  13. I will add more later when I'm not in the middle of cooking dinner, but I will start to answer a few of the questions now. Yes, I had Strep this winter when everyone else in my family had it - 3 times. And I had it again last month (like I said, a fun year). At this stage of my life, though, this is what happens: I get seriously depressed and moderately anxious, for about one day. No OCD stuff at all, but a really bad day - I can't focus on anything, I feel hopeless, etc., and then it's over. I get very, very mild ticks, more like "twitchy" - nothing that anyone would remark on. I probably just look like I'm a bit uncomfortable in my clothes. I am, in fact, uncomfortable in my clothes - my skin gets very sensitive and any roughness or stitching bothers me, so I have to wear very soft sweats (I'm not usually this way at all). Sometimes I feel kind of tired and mentally cloudy for several days (but of course, I'm sick, so that's to be expected...). But really, the whole thing is only minimally disruptive. The depression almost always happens before I have symptoms of a sore throat or any other physical symptoms, but I know from the depression that I will have those symptoms within the next 48 hours, and I'm right 100% of the time. The saving grace about the whole thing is that I know what's happening, my husband knows what's happening, etc., so I just lay low (and my husband hunkers down) during the bad day or two and then it's over. I'll tell you more about my childhood history when I have a bit more time later, but let's just say that then, it was really, really bad. I spent two years in hospitals as a kid, etc. Millions of dollars (literally) in treatments that didn't really work. Then around at age 19, much of it just "went away", practically overnight. Around age 25 I had another brief bad spell, but since around 30 there has been very little to deal with, and after I started having kids at 35, even that went away...except for the very occasional day here or there, as described above. This is the "short" version, of course! More later.
  14. Hi everyone, I am brand new to this forum. I am a 41-year old Mom, and I am a grown-up PANDAS. My symptoms began in first grade, and progressed intermittently through my adolescence until I was finally diagnosed in my 20's with an auto-immune, infection-triggered neuropsychiatric disease (bipolar disorder, mostly, with phases of anorexia nervosa and mild to moderate tics). It was essentially an unknown syndrome at the time (outside the context of lupus and MS, that kind of thing), but my doctor was a very astute and determined researcher, and he was able to figure out my pattern by checking autoantibodies and the whole 9 yards. Interestingly, my illness practically fizzled away by the time I was 30, and vanished basically completely when I had my first child (as my doctor predicted it would). Fast forward many years, and I now have two sons, aged 5 and 2, who both have PANDAS/PITAND. The older one gets OCD & host of other things, and the younger one gets really bad vocal problems (e.g. stuttering, utterances), making him practically incomprehensible. They both tend to get sick around the same time, so we have lots of fun during those periods (ha). My whole family has been through the ringer with Strep this since February, so it's been a trying time. We seem to be having tremendous success with Intrakid and Omegabrites, however. I was skeptical, and the Intrakid is expensive, but my husband and I agree that so far it seems to be the "cheapest money we've ever spent." Even my 5-year-old's general social anxiety seems to basically have gone away, which has been a big surprise. Professionally, I am a medical researcher (currently in the pharma company world, but previously in academia). I actually worked for 3 years on studies of familial associations between autoimmune and child psychiatric disorders (this was before all of the Swedo, etc. work in the 90's), before moving into the development of new drugs for autoimmune illnesses (a few of my "babies" are now on the market). I am new to the "field" of PANDAS, but I have some ideas about it and I'm thinking about moving back into the area research-wise. I'm actually in the conception stages of a more formal PANDAS-parent survey, but wanted to conduct a really informal poll here for any who want to share...and who would be interested in seeing the results. So here goes. I will share my thoughts after I have some results - don't want to bias anything up front! 1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) 2. At what age did your child begin to speak? 3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? 4. Has your child had food allergies? To what? 5. Does your child have changes in bowel function during a PANDAS exacerbation? 6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)? 7. Do you have joint hypermobility? 8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's? 9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.) 10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? 11a. Does your child have panic attacks? 11b. Is your child, or has he/she been, very separation anxious? 12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? 13. Does anyone in your family have mitral valve prolapse? 14. Does your child have any particularly striking "gifts", talent-wise? 15. How would you describe your child's "regular" personality? I hope that this isn't intrusive stuff for a "newbie" to be asking, but I imagine that others may also be interested in seeing the answers... I will answer for myself and my kids, too, but again, I don't want to bias anything by responding first! Thanks!! And I look forward to getting to know you!
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