momto2pandas

My experience with the SSRIs as a PANDAS youth was tricky. Prozac made me extremely manic within a day at 5 mg. Zoloft was better (at small doses), but still eventually made me start to "rapid-cycle". In kids, mania tends to manifest as mixed states, which includes rages, irritability, etc. as well as "activation." Before we figured out that antibiotics were what I needed, I took very low doses of SSRIs with an antiepileptic mood stabilizer (Tegretol was what they had at that time, none of these newer ones), and that seemed to work quite well, but we always tried to wean off of the SSRI asap to avoid cycling. Usually it just took a few days of SSRIs to "reset" things and kick me back into a good place in any case. Other people I have known with the same syndrome had good luck with Wellbutrin in controlling OCD etc. sx and it is much less activating.

My PANDAS ds, age 6, is just like this too, and has been for his whole life. (He's probably one of the few 3 year olds who has become consumed with drive to learn anatomy and had pictures of the excretory system, digestive system, etc. that he had drawn plastering his whole room -- "Mommy, my favorite body part is the large intestine!"). I don't worry about driven part too much since he seems to really relish his passions and projects, but the perfectionism concerns me and I have trouble handling it since I don't relate. It's hard to even point out a single spelling error without him getting REALLY upset and wanting to do the whole project again. I've noticed lately that his teacher sends his work home to me with notes saying "please correct this with him" and I wonder if she's having a hard time doing it at school and is thinking that it would be easier for me. During an episode, even a tiny one, I don't even try. Most of the rest of the time I can do it if I'm gentle about it but I feel like I'm walking on eggshells. We also have this problem when he misbehaves. We can discipline him VERY lightly for something naughty he's done and he still goes on and on about being a lousy person, wails with dismay, etc. He doesn't seem to have any perspective about grey areas no matter how hard we try to explain things to him. This piece especially is hard to take since I can't let him e.g. yell something mean at his brother without saying something to him about it, but I hate the fact that no matter how gently I say something he still takes it hard. He's so very sensitive. Incidentally, my Dad is OCD and probably PANDAS, and he's just exactly like my son, perfectionism and all. It may not be "normal," but as long as they choose personal and professional circumstances that are well-suited to their personalities, as my Dad did (he's a very successful scientist in an area that requires a lot of detail work), it can be a real advantage. Or so I keep trying to reasusure myself, anyway.... Anyway, I don't think that it's something that we can fight, at least in my ds's case it seems to be very ingrained in his personality.

Another interesting bit - a patent. http://www.patentstorm.us/patents/6982089/description.html

Here is a study of Enbrel in anxiety/depression in psoriasis patients. This is the kind of result I've been aware of anecdotally. http://pharmalicensing.com/public/news/vie...Quality_of_Life Here is another interesting bit. When this boy's infliximab stopped working, he developed PANDAS (looks like to me anyway), which then resolved after a spell on adalimumab. http://psy.psychiatryonline.org/cgi/content/full/50/4/425

I've had two burning questions since I joined this forum. The first is whether anyone has experience with biologics for treating PANDAS, e.g. anti-IL-1 drugs (Kineret), anti-TNF-alpha drugs (e.g. Enbrel, Remicade, etc.)? I have never seen anything about trials of these drugs for PANDAS, but I'm not sure why not. Granted these drugs are nothing to mess around with lightly, but they are taken by children with other autoimmune diseases (e.g. RA), and PEX/IVIG are nothing to mess around with lightly either. IL-1 and TNF have been implicated in disruption of the BBB (example: http://www.neuropsychiatryreviews.com/08de...lood-Brain.html - you can find many others - the example of trying celecoxib at the bottom is, I think, not a good one - that is not the drug I would have tried; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1892817/) and are potent inflammatory mediators, so from my point of view it would stand to reason that drugs inhibiting these cytokines could be extremely helpful. I worked on the development of these anti-inflammatory biologics for RA for many years and have never fully understood why they would not be applicable to PANDAS as well, when they work for such an incredibly broad spectrum of other autoimmune diseases. Has anyone ever had this discussion with their doctors, or tried it? I am no expert in the pathogenesis of PANDAS so I may be missing something obvious. Some of you seem to have much more expertise on this then I do, so I would be curious if others have thought of this possibility and rejected it for a rational reason. My other burning question has been: Am I really Patient 0? I am surprised that I seem to be the only PANDAS parent on this forum who had PANDAS herself. Am I right about that? Granted in my generation there was no term to apply to it, but I can't be the only 40-something out there whose pattern eventually got noticed, investigated, and "diagnosed", even if the diagnosis didn't have a name. There must be someone else out there...?

I always wondered if there was something more physiologic to it than just the emotional part. While I was in the throes of it, when I was in the hospital and trying to gain weight (more or less forcibly), it took at least 5000 calories per day for me to put on weight, sometimes up to 7000. The staff were completely convinced that I was somehow managing to purge or was exercising on the sly, neither of which was true. They even took the plants out of my room because they thought I was vomiting into my plants (absurd!). I never purged and had no explanation for why it was so difficult for me to gain weight, and they never believed that I was actually consuming that many calories. But once I was "cured," I gained 25+ pounds in no time at all just eating what I was hungry for. The funny thing also, is that I grew two inches at that time, after not having grown for years, even though I was in my late teens by then. I have since learned that some immunodeficiencies are associated with poor fat absorption, and I wonder about this. I've always had a problem absorbing fats - even whole milk always gave me diarrhea, and I had lots of apparent malabsorption during the anorexia years. My doctors had basically explained it as the anorexia itself having "ruined" my gut, but I have always suspected otherwise. Eating, especially fats, made me feel really physically uncomfortable during that time. I had not really thought about this, as Meg is normal looking - and very athletic, so she is always thin. But your post made me grab her medical records again. Our worst time this year was June & July. On 5/25 she was 54.6 lbs at a doc visit - on 7/6 at another visit, she was 52.8. I always just say she is 50 lbs, and never thought about it. She was weighed yesterday at GI appt, and was an astonishing 58.5 lbs! We were all shocked at how much she weighed - she has gained 6 lbs in the last 4 months since she started antibiotics. We have joked in our house that she would never make the 8 and 80 rule for car seats, as she has not really gained weight in the last year. So as I look back, she was certainly stopped in her tracks during the worst times in terms of weight gain. So maybe a growth spurt, but now that I think on this, it feels like I was missing something obvious. I really hope your other daughter does NOT have PANDAS. But I will tell you that Meg was 98% around stomach ache & throwing up. Nearly all contamination fears led back to that. All my best -

Not to scare anyone, but my symptoms were very much like that. I might have been happy about losing that first 5 pounds (which brought me from thin to noticeably thin, stylish at the time), but after that I was clearly too thin and knew it, and I lost the next 30 pounds not because I was trying to lose weight but because eating/food/fullness/specific foods (sugar, fats) caused such anxiety and panic. In the eating disorders programs I was in, I was always considered "atypical." The part that the doctors considered most bizarre was that I had no distortion whatsoever. They used to do this test where the asked you to create a loop with a string that was the size of your waist, your hips, etc., and then they measured the difference between your actual measurements and what you thought they were. I was always exactly spot on, better than "normal" people. Most anorexics are off by a massive amount. I was also atypical in other ways, e.g. I came out totally normally on all of the psychological testing, except for the IQ test. This led to a considerable period of not being diagnosed with anorexia at all but rather as being "poorly adjusted to extreme giftedness"... until I was rushed to the hospital in a crisis. Once the specialists had at me I received the diagnosis, though an "atyipcal" one.

I just read that isoniazid is pretty much always given with rifampicin, so perhaps that is what I was taking. I don't remember that part specifically, though. NOT boring!! I think always think it's fascinating to hear about PANDAS from adult-who-had-it-as-a-child point of view. BTW...I went to a school where (I was in 8th grade in 1979) we had a girl who had anorexia in 7th grade, and several more in high school. I don't know if they had PANDAS (probably not...I'm not so much aware of tics/ocd/mood issues), probably "regular" anorexia nervosa. The girl who had it so early was a top student. champion cross country runner, got lots of academic awards as well. One sad thing was that her growth was severely stunted b/c of the malnutrtion. So, in college she still looked like an 11-year-old girl (I understand this wasn't great for her social life). Another girl from my class ended up dying in her early 20's b/c of cardiac complications of anorexia (which she also had in high school...I think starting our Junior year or so.) Knowing these people is one reason anorexia in my dd (7.5 years old at the time) really scared the be-jeezers out of me. When did you hit puberty? Was your recovery tied in with that at all?

Unfortunately puberty didn't help me at all, but it's hard to say, since the anorexia nervosa actually started right around that time and once you get down to 55 pounds, your body is a long way from actually being in puberty. I had actually gotten my period only once, and then became anorexic. I didn't start menstruating on my own again for several years. I woke up this morning remembering two things, though, that preceded my sudden recovery. One was that I started taking hormones to make me get my periods back and protect my bone density - but I was on those for at least several months before the "light bulb went on", so who knows. The other - and I don't remember the precise timing since I never tied it together before but I can trace it down to being close in time - was that I was diagnosed with tuberculosis (positive TB test + positive chest x-ray), and started taking isoniazid, which I was on for 2 years. It was during the early part of that time that I suddenly recovered. I just looked isoniazid up on wikipedia, and it is "bactericial to rapidly-dividing mycobacteria". Wikipedia also states that it is never used on its own to treat active tuberculosis, so I presume that I must have been hit with some heavy antibiotics at the time also, but I don't recall that part. Who knows if there is a connection, but it's funny that after posting last night my brain dredged up overnight the fact that I actually was treated with antibacterials at that time. NOT boring!! I think always think it's fascinating to hear about PANDAS from adult-who-had-it-as-a-child point of view. BTW...I went to a school where (I was in 8th grade in 1979) we had a girl who had anorexia in 7th grade, and several more in high school. I don't know if they had PANDAS (probably not...I'm not so much aware of tics/ocd/mood issues), probably "regular" anorexia nervosa. The girl who had it so early was a top student. champion cross country runner, got lots of academic awards as well. One sad thing was that her growth was severely stunted b/c of the malnutrtion. So, in college she still looked like an 11-year-old girl (I understand this wasn't great for her social life). Another girl from my class ended up dying in her early 20's b/c of cardiac complications of anorexia (which she also had in high school...I think starting our Junior year or so.) Knowing these people is one reason anorexia in my dd (7.5 years old at the time) really scared the be-jeezers out of me. When did you hit puberty? Was your recovery tied in with that at all?

I can speak to my own experience on this one. I started with anorexia nervosa when I was 12 back in 1979, about 14 years before I was diagnosed with what would later come to be called PANDAS. I had had other kinds of PANDAS symptoms since first grade, but nothing that severe. It was the same story. I got what would turn out to be a very persistent infection, and then I literally woke up anorexic one day - my memory of it is very specific. At the time, anorexia nervosa was practically unheard of. Went from 90 pounds down to 55, 2 years out of the next 5 spent in hospitals, very bad ticcing & OCD & eventually depression all the while, etc. etc., but I made it through. The anorexia nervosa actually "went away" prior to my antibiotic treatment so I can't give advice about how to put a stop to it, but one thing I can say is that when it really left, it went away just as quickly as it came on, and then never came back even one jot (and that was 25 years ago, now). One day, I just wasn't anorexic any more, and there wasn't even any "baseline change" that persisted longer than the duration of habit - all of that weighing and calorie counting and obsessive fretting no longer interested me. At first it was actually a difficult adjustment for me NOT to be anorexic anymore after years of living with it at various levels, but once it truly turned off, it just never turned on again even though there were moments when I wanted it to. I don't have any medical advice about how to deal with exacerbations other than what you probably already know re. infection treatment and immunotherapy. Antidepressants were somewhat helpful in keeping my head above water at times during that period (they just had the old-fashioned ones then). I don't think they were curative and I had lots of bad reactions to them (including mania), but it's possible that without those boosts here and there I would have died. If I had a child with AN, I would try them, cautiously, if it came down to desperation. As for other advice - just my opinions, of course: First, don't be fooled into thinking that weight gain means recovery. In my history, there were loads of fits and starts that looked like recovery from a weight gain perspective, but that weren't. I can't tell you how many times I gained and lost 25 pounds or more during that time, when everyone thought I was "cured" (but I knew I was not). If the compulsive behavior hasn't gone away, then the disease still needs to be treated. Second, it is very easy for anorexia nervosa to destroy relationships between kids and their parents, since it looks so much like willful self-destructive behavior - stubborness and defiance. I won't bore you with my whole story, but try to remember that it is an affliction that some day your child will come out of, and she will remember how the people around her treated her - as if she was the perpetrator, or as if she was the victim. After all this time, I still can't forgive my parents for the way I was handled during that time. (I don't mean to imply that you're not doing it right - this is very general advice!). I have a child with PANDAS now (probably two of them - not 100% sure about my little guy yet), and my biggest fear in the whole thing is that some day he'll develop AN like I did. I thank God, though, that we know so much more about how to help kids now than we did in my generation. So far my guys are relatively mild but I worry, of course...

I recently had my first episode in more than a decade, and managed to stop it completely in its tracks with steroids, which were prescribed with Augmentin. The Augmentin still hasn't cleared the infection several weeks later (and that's after two courses of Zith, prior to the Augmentin), but the neuropsych stuff cleared quickly with the steroids and hasn't come back. I had only had "PANDAS" symptoms briefly - few days - before I ran to the doctor for tx. It was a bizarre "blast from the past" week for me, though - even with the same clothing sensitivities, tics, etc. I had as a kid. Gave me renewed sympathy for my own kids.

I don't know if you will find this reassuring or not, but it might help, in difficult moments, to take the long view. Remember that PANDAS has actually been around probably forever, if not diagnosed as such, and many (some say most) of us do well eventually even without any treatment. It took me until my 20's to be diagnosed, by which time my symptoms were much milder than they had been when I was younger. Needless to say, I received no immune tx whatsoever as a child, had to leave school several times, gave my parents loads of grey hairs, etc., but even given that extremely undertreated course, by the time I was a young adult I was doing very well, not just in a minimal self-care way but sailing through Ivy League schools, relationships, etc. By the time I was 30, the infection-triggered episodes were down to being only a nuisance, probably not even noticeable to observers and not requiring any regular treatment. (I had taken LT antibiotics in my 20's.) Some of you might find this interesting, though - at around age 40, I started developing constant infections (I'm now 42), and just in the last few weeks, I had my first real "PANDAS" episode in close to 2 decades - with tics and the whole lot. I've had strep several times in that interval without consequences severe enough to justify more than the usual course of antibiotic, so I have no idea what bug/strain was potent enough to trigger this reaction this time around - but it caused a nasty sinus infection. For the PANDAS sx I was treated with steroids and Augmentin by my GP, and the whole neuro thing cleared up in less than a week. It almost made me cry to see how easy it was to dispense with an episode at this age with one visit to a GP and a few bucks of drugs, after having suffered for months or years at a time as a "difficult" child... Of course, the infection still lingers, and I'm now back under the care of an immunologist and waiting for test results re. primary immune deficiency. My understanding is that the full blown sx of PIV frequently don't become obvious until this age. I'll be very curious to see the results.

I wonder, also, has the antibiotic regime remained completely stable this whole time? Someone else mentioned that doxycycline is frequently given for Lyme. I am a grown-up PANDAS (does that make me an "ANDAS"?) and I just wanted to mention that, in my younger days, I had autoimmune neuropsychiatric reactions to both doxycycline and minocycline. Actually, I got a whole lupus-like sydrome with rashes, joint pains, etc. also, but the neuropsych sx were most prominent and pretty much looked exactly like my infection-triggered symptoms. So, if he has done well on antibiotics before but has now switched the antibiotic he's taken or tried to at some point - it is possible that he may be reacting to the antibiotic itself at this point. Probably not the case, but it took several months to figure it out when my antibiotics actually starting causing the problems rather than fixing them, so I thought I would pass this on as something to be aware of....

I don't know where they live, but I'm guessing the East Coast. I would suggest a consult with Brian Fallon, MD, at Columbia (New York): http://asp.cumc.columbia.edu/facdb/profile...ffil=Psychiatry. He is an expert on anxiety disorder manifestations of Lyme Disease and also has some knowledge about autoimmune OCD's. He's also a super nice guy. You could probably just call him for advice (if you want to pursue it and don't feel comfortable doing it out of the blue, I could connect you). It sounds to me like his symptoms could be explained completely by the Lyme without invoking a PANDAS diagnosis, or they could co-exist. Lyme reactions aren't limited to OCD - it can cause the full spectrum of anxiety disorders, depression, even bipolar. Since most of these things, in children, are associated with separation anxiety, eneurisis (bed-wetting), etc., it would not surprise me at all if it could all be explained by the Lyme.

Hi everyone. I've been so busy with work lately I've failed to look at this board for several weeks. I know that I'm behind on answering some people's questions - I should be catching up in the next couple of days. Thanks again for the surveys. As for intelligence, etc., there is a known trend for kids with autoimmune type things to have higher than normal intelligence and creativity - I don't know the actual data, but 2 different allergists have told me this. Seems to be borne out by the information we're sharing with each other, as well. Well wishes to all!

I don't know if it's ok for kids, but I have found in the past that SAM-E could usually turn me around in one day. If I took it for too many days, though, I got manic, just like with an SSRI. I think it's good stuff, but pretty potent. Hi Lori and welcome there are a number of supplements that elevate serotonin but do be sure to check with your physician before trying any and *especially DO NOT* combine them with any meds as dangerous interactions can occur. It is also not a good idea to combine these supps without guidance from a qualified professional and it should be noted that some people may still have side effects from supplements some of the supps that are used include inositol, methionine, samE, l-tryptophan, 5HTP, GABA, phenylalanine, vitB12 and vitB6 and also the herb St John's Wort(SJW) my son uses inositol, methionine, vit B12 and vit B6 (in the P-5-P form) he used 5HTP and SJW in the past but finds they make him edgy and feel weird now inositol is also a B vitamin and is generally well tolerated by most people

Totally agree with you, Caryn!

My sons, who have PANDAS, don't get hyper, really - more on the lethargic/depressed/anxious spectrum. But I've heard of many who do go the other way. Does he have PANDAS?

We got ours on cleansurroundings.com. However, if the company is saying that they are only selling it by prescription now, then you might want to listen. I plan to call them Monday to get the scoop on that. My kids seem to be doing great on it but if there is something that needs to be watched for, I want to know about it.

I'm pretty sure you don't need a prescription. We just ordered it on the internet.

I studied on inhaled steroids and other asthma treatments for a couple of years, and I do not remember anything about an association between inhaled steroid use and tics - at least in the general asthma population. That's not to say that it's not there since I was not focussing on it at the time, but I don't recall having seen anything about it. Definitely ask your doctor. For this kind of thing you can also look at www.pubmed.com and put in your keywords (i.e. "inhaled steroids" and "tics") and see if anything comes up. Or you can go to the Advair or Flovent website and look at the "product labeling" and read through all of the fine print, which will tell you pretty much everything that came up in clinical trials and generally stuff that has come up outside of trials, too, if it's a significant concern.

Hi, Just wanted to thank those who have responded to the survey and to give you just a tiny little preview of what I've been thinking about. There is a report in the medical literature about panic disorder, social anxiety disorder, and a "possible medical syndrome" linked to Chromosome 13 (below). (There are actually lots of reports about such complexes - there is also an association in some people with joint hypermobility [though it's possible this develops with duration of autoimmune activity], heart murmurs, other autoimmune disorders, etc.) I was actually working on this project for 3 years when I was at Columbia, read every single case report, and got to know the data very well. Based on it, I wrote up a grant proposal to perform a several-year study the connection between early-childhood anxiety disorders and autoimmunity - and was awarded a large multi-year grant and a faculty position at Columbia...but turned both down to accept an offer in the pharma industry (studying treatments for autoimmune disorders) that I felt I could not refuse. Now, I'm thinking of going back to this type of work. I believe that the syndrome described below and PANDAS are basically the same thing. There is actually a lot of literature that I believe converges and could give us a much better handle on PANDAS, and that I'd like to pull together into a "hypothesis paper" to publish. Dr. Weissman's group is focused on panic disorder because they have been doing a genetic study of it and so collected data from panic families, but the families are full of all of this other stuff (as she alludes to in the last sentence of the abstract), as well. The focus is just on panic because she started with panic patients. I did a project on the dataset that also looked at rheumatic fever (a strep illness), and let's just say that the data were very interesting, though I never published them. (This was all unfortunately happening during my lupus-like episode and writing was exceedingly difficult, so I didn't publish much of what I did during that time.) There is a lot more to tell but I'm not sure how much I'm at liberty to say... Couple of other tidbits, though - I question the strep-molecular mimicry hypothesis for PANDAS. I'm not sure it's wrong, but based on some of my later work, I suspect that there are other possible explanations that could be more helpful in pointing to different treatment modalities (treatments that actually already exist on the market). I have to study this some more, though... For those of you who don't know what interstitial cystitis is, it basically means you feel like you have to pee all the time. You can google it for more info. Mitral valve prolapse is often the cause of "heart murmur". Most people with MVP don't know that they have it. Anyway, please keep it coming with the surveys - they are really helpful in stimulating ideas! Thanks! Panic disorder, social anxiety disorder, and a possible medical syndrome previously linked to chromosome 13. Talati A, Ponniah K, Strug LJ, Hodge SE, Fyer AJ, Weissman MM. Department of Psychiatry, College of Physicians and Surgeons, Mailman School of Public Health, Columbia University, New York, New York 10032, USA. BACKGROUND: Several studies have identified increased medical problems among individuals with panic disorder (PD). We previously found that specific conditions--interstitial cystitis (IC), mitral valve prolapse (MVP), migraines, and thyroid disorders--aggregated non-randomly among panic families (we called this the "PD syndrome") and that families with and without the syndrome were genetically distinguishable on chromosome 13. We present data from a new case-control study that replicates and extends the syndrome phenotype clinically. METHODS: Probands with a definite diagnosis and family history of PD (n=219), social anxiety disorder (SAD; n=199), or both (n=173) and 102 control subjects with no personal/family history of anxiety were interviewed with the SADS-LA diagnostic instrument. Medical history was obtained via medical checklist and the family history screen; IC symptoms were assessed with criteria developed by the National Institute for Diabetes and Digestive and Kidney Diseases. Subjects and interviewers were unaware of the syndrome hypothesis; final best-estimate diagnoses were blind to syndrome data. RESULTS: Probands with PD or SAD, as compared with control subjects, were five or more times as likely to report IC symptoms and twice as likely to report MVP and migraines (other genitourinary and cardiovascular problems were not elevated). First-degree relatives of probands with PD or SAD were also at increased risk for IC, MVP, thyroid problems, and headaches, regardless of whether the proband reported the same condition. CONCLUSIONS: These findings are consistent with previous data supporting a PD syndrome and further suggest that this syndrome might include other anxiety disorders well.

No, the doctor who predicted that my issues would cease with childbearing was not the one who diagnosed the autoimmune condition. (Actually, he did diagnose thyroiditis, but not the autoimmune pattern to my psych issues.) I think he was just going on patterns he had seen with similar anorexics that he had treated - he never mentioned what he thought was the cause. You have to admit that there does seem to be a quite stereotypical "type" of child that has PANDAS, and I suspect that he had identified that distinctive type and its patterns without knowing what was actually different about its etiology. Yes, I also wondered if it was part of the "reorganization" of the immune system that you do in order not to reject the baby. There is some sort of selective immunosupression that goes on. I think it's interesting though that many autoimmune conditions get better during pregnancy and flare right afterwards, but I suffered no flare. The Omegabrites might have helped with that. I have to admit, though, that I go through significant periods these days without taking the Omegabrites (you have to mail order them, and sometimes I don't get around to it), but I still haven't suffered any kind of significant PANDAS-type flare since my first child.

I think the below response is great. As I said before, I made it through school ok, but what a difference it would have made to my self esteem if I had been made to feel more supported by my teachers and others before my condition became so dire that there was no question of my needing special accommodation. Since there was no recognition of what was happening to me by the adults in my life, I was constantly accused of basically "doing it on purpose" and essentially being a brat and purposely causing everyone else a lot of trouble. I had teachers yell at me. Talk about adding insult to injury. I guess there needs to be a balance and you have to figure out how much your kid can manage, and how much needs to be accommodated. I think that in some ways it served me very well to have to do what all of the other kids did and to develop my coping skills to make sure that I could manage it as well as possible - that prepared me well for the "real world". On the other hand, it's very unfortunate to go through life constantly fearing failure despite any talents you might have because you have this "thing" that can undermine your efforts at any turn, and you KNOW that if/when that happens, no-one will ever give you the kind of break that you might get if you had a "normal" illness. I am still trying to get over that feeling after all of this time. So I think I would have benefitted from having a higher dose of understanding, compassion, and accommodation in addition to the bolstering up of my own coping skills.