momto2pandas

Yes, thank you.

Interesting - mostly central/northern European so far.

Just curious - I remember, back in my days of research in psychiatry, this clustering of anorexia nervosa/anxiety disorder/autoimmune cases in families with Mediterranean background, e.g. Italian, Jewish, Greek, Armenian, etc. I know it's hard to get a read from a forum like this, but just curious if there is a lot of Mediterranean blood in this group. We're Italian and Armenian, here.

When I had that nasty sinus infection late last year that caused a first-in-many-years resurrection of specific PANDAS symptoms, my doc cut bait after 2 weeks of azith, since it wasn't "getting at the infection," and switched to Augmentin, which did clear it up. It's so hard to decide whether to be patient vs. "throwing good money after bad" with something that isn't going to kill that strain of whatever it is. If you're seeing improvement, though, seems to me that that's a good sign. I don't recall seeing anything get appreciably better with the zith that I took that time. Of course, it was probably easier to assess in my case since the sinuses indicated very clearly whether anything was getting better. I know I sound like a broken record with the omega-3 fatty acids this morning, but I notice that he doesn't seem to be taking any from your description below. In my view, those are critical - have you given them a try?

As some of you may know, my research field for many years now has been cytokine modulating drugs/therapies. Anyway, I was doing some background research on the effects of omega-3 fatty acids on cytokine modulation in prep for an upcoming project, and happened to come across the following article. Some of you may have seen this already but I hadn't, though I had seen a lot of these kinds of trials for ADHD, bipolar, etc. My kids don't have significant behaviors of this type (we have one-sentence rages, mostly "I DON'T WANT TO GET DRESSED!") but I recall seeing a lot of descriptions of it on this board and thoughts about it being autistic spectrum. Something to think about. Note that the raito of EPA/DHA given in such studies is thought to be vitally important (as well as a high enough dose). Biol Psychiatry. 2007 Feb 15;61(4):551-3 Omega-3 Fatty Acids Supplementation in Children with Autism: A Double-blind Randomized, Placebo-controlled Pilot Study. Amminger GP, Berger GE, Schafer MR, Klier C, Friedrich MH, Feucht M. Department of Child and Adolescent Neuropsychiatry, Medical University of Vienna, Vienna, Austria; ORYGEN Research Centre, University of Melbourne, Melbourne, Australia. BACKGROUND: There is increasing evidence that fatty acid deficiencies or imbalances may contribute to childhood neurodevelopmental disorders. METHODS: We conducted a randomized, double-blind, placebo-controlled 6-week pilot trial investigating the effects of 1.5 g/d of omega-3 fatty acids (.84 g/d eicosapentaenoic acid, .7 g/d docosahexaenoic acid) supplementation in 13 children (aged 5 to 17 years) with autistic disorders accompanied by severe tantrums, aggression, or self-injurious behavior. The outcome measure was the Aberrant Behavior Checklist (ABC) at 6 weeks. RESULTS: We observed an advantage of omega-3 fatty acids compared with placebo for hyperactivity and stereotypy, each with a large effect size. Repeated-measures ANOVA indicated a trend toward superiority of omega-3 fatty acids over placebo for hyperactivity. No clinically relevant adverse effects were elicited in either group. CONCLUSIONS: The results of this study provide preliminary evidence that omega-3 fatty acids may be an effective treatment for children with autism. Back to Index Page

Pycnogenol! Isn't that the supplement that radically increases sperm counts and that is used as a male fertility drug? Interesting! I don't feel my son is a good candidate for stimulant therapy (adderall, etc) for attention and focus issues and neither did his DAN! doc. We use P5P (a form of B6) in conjunction with L-tyrosine (an amino acid). We also use pycnogenol (a type of pine bark extract). All are found at our local health food store. Not sure of the dosing schedule for P5P and L-tyrsonine (he takes 50mg & 1000mg) but I recall the dosing for pycnogenol to be one mg per pound of body weight. Gat's mom.

So sorry that you had to hear this, but there is a good chance that something will indeed change before the next school year. That's one thing about this condition - it CAN change on a dime. Have you tried Omegabrite supplements? www.omegabrite.com We have tried other fish oil supplements and nothing seems to work as well. The only trick is that the dose on the bottle for kids is lower than the dose they used in clinical trials, and I don't think it's enough for PANDAS. We have had some struggles with my ds6's attention lately (not severe enough that the teacher has mentioned it, but enough for me to notice) and I had attributed it to residual effects of an exacerbation we had over Christmas with major dental work, but this morning my husband told me that he had halved ds's dose of omegabrite in the last few weeks because he had noticed that the dose he had been giving him (based on my research from the publications) was more than the dose on the bottle. I'm guessing that this is actually the problem because the biggest difference we ever see is on omegabrites vs. off. No side effects.

I don't know if this helps, but I have been on steriods (Medrol pack) twice for PANDAS episodes (plus arthritis, overall autoimmune craziness) associated with bad sinus infections. In each case my mood got MUCH worse on day 1 or 2 of the pack, but by day 3 things were leveling out and by the end of the course I felt great. Well worth the brief roller coaster for me, anyway, though it is very disorienting.

Yikes! I'm positive for 16 of these!

Has anyone had any experience with IgG injections in the bottom? I had that 22 years ago, and it was as simple as going into the student health office, bending over, and dealing with a couple of big needles. (I was traveling to the third world, and my doc felt like I needed an extra boost of immunity.) Felt fabulous for about 8 months afterwards. I know that these days people prefer to do IVIG, but I know that it can also be complicated and expensive to get that. Have Ig injections been suggested to anyone? Just curious.

Ditto. Thank God for the tv. When they flare it is a godsend. For one thing, their main indoor play activity is legos, and when those fine motor skills go, legos become extremely frustrating and the creations made with great difficulty get dropped a lot...and you know what happens when lego creations get dropped from 3 feet high onto a hard floor. No emotional buffer to handle that repeatedly all day (them or me). Two, they get along well when watching tv, so I don't need to worry about who is taunting whom. Three, it seems to be extremely relaxing for them to engage in a normal, pleasurable activity that doesn't put them up against motor or emotional challenges that they're not up for. And four, it's a great break for me. Since they don't watch much tv on a routine basis, we save up a lot of stuff on TiVo that's fun for them when we need it.

That is so funny about the weiners and butts and so on. I have two young boys (3 and 6) with PANDAS and I have definitely noticed increases in "potty talk" when they flare. I wouldn't really call it obsessive or compulsive in the sense that there is unpleasant pressure to do it (tic-like) or that it's all day long, but when I get them in the backseat of the car together when they are having "off" times, they spend the entire time talking poops and farts and butts and cracking each other up maniacally with the noises they make, almost like they are drunk or something. My friends say that their boys do that too, but I have definitely noticed that mine do it primarily when other stuff is flaring up. Never gave it too much thought.

Hi Wornout - I'm sitting here thinking about you guys this morning and hoping that you're having a better day. When the psych took him off of the Celexa because it was "activating" him, was he actually getting manic? If so, he may be on the downswing from that. Downswing from mania is the really the worst. Just my experience, but once I really got into that bipolar cycle from an SSRI, I don't remember ever being able to get out of it without at least a little Depakote (or Tegretol, which we also tried - good too but not as quick) no matter what was going on with my infectious status. Hoping for a good day for you.

For my kids, they are usually dilated for 2-3 of days. We can generally get exacerbations under control within 2-3 days. I can see easily when an exacerbation is starting from the pupils, and when I see the irises again, I heave a huge sigh of relief. When ds6 got out of the dentist chair after his extraction/nerve work recently and his pupils were suddenly gigantic, I felt like I was going to throw up right then and there with dread. Sure enough, it was a very tough week. Funny thing is, my Mom always said that I had the pupils issue when I got sick and "went into a trance" (as she put it) when I was a kid - she knew when it was coming by this sign. But as an adult, even when I had that one real "PANDAS" episode a couple of months ago, my pupils looked totally normal. Granted it was nothing like the severity I had when younger but I still thought it was strange that my eyes didn't seem to react at all.

That makes sense to me...and this is what I thought was happening with my child. But, the immunologist looks at her low IgG (below range low, not low in range), low IgA levels (again below range-considerably) and says, no she doesn't have a deficiency...she'd be really sick all the time if she really had a deficiency- but I keep thinking the symptoms of illness are signs the immune system is fighting something...what if it isn't fighting very hard? Would there still be symptoms? I think I would get a second opinion from another immunologist. That sounds strange to me. Is it really true that she comes up that deficient but is never sick? I believe that you would generally see some signs of some infections even if the immune system wasn't fighting very hard. Abcesses? Skin infections/long time to heal? Anything like that? She bangs her forehead rather hard and has had a scab there for years that hasn't been healed in years...but she probably has a banging episode at least once/day. She has sores on her wrists and hands from biting, which do take a long time to heal- she doesn't bite a lot, but when she does it is deep. She has a scab on her knuckle that has been there @ a year, I don't think she's bit that one in over a year. About once a year, she will get something that gives her a fever, but she's been on antibiotics for at least 3 years now. Before we found the chronic strep, she was sick all the time- constant sinus and ear infections- sometimes treated, but more often than not we were told it was just allergies, common with autism, and sent on our way. She is very hard to evaluate- nonverbal, largely uncommunicative and doctors mostly just want to pass her off to somebody else... I am not really an immunologist, but it sure sounds like an immunodeficiency to me. My understanding is that some immunodeficiency patients can be managed with just antibiotics as far as having symptomatic illnesses is concerned - so maybe she's like that. I also believe that many of the commonly given tests for infections/infection history are essentially IgG tests, so if she isn't creating IgG appropriately in the first place, or is clearing it, then she might not have positive tests for pathogens that she actually has been infected with. Here is an example: http://www.labtestsonline.org/understandin...s/cmv/test.html Have you checked out primaryimmune.org?

That makes sense to me...and this is what I thought was happening with my child. But, the immunologist looks at her low IgG (below range low, not low in range), low IgA levels (again below range-considerably) and says, no she doesn't have a deficiency...she'd be really sick all the time if she really had a deficiency- but I keep thinking the symptoms of illness are signs the immune system is fighting something...what if it isn't fighting very hard? Would there still be symptoms? I think I would get a second opinion from another immunologist. That sounds strange to me. Is it really true that she comes up that deficient but is never sick? I believe that you would generally see some signs of some infections even if the immune system wasn't fighting very hard. Abcesses? Skin infections/long time to heal? Anything like that?

p.s. While I was still on the psych med route way back when, I also got too activated and would "rapid cycle" moods with any more than about 3 days' worth of SSRIs, and Depakote was my antidote to that. Put a dead stop to it. I never wanted to stay on Depakote because it felt like a heavy hammer to my issues (hard to describe), but there were times when a heavy hammer was exactly what I needed.

I'm so sorry that your family is going through this. You might want to give the Depakote a try. After I was dx with autoimmune neuropsych issues instead of "classic" ones, my psychiatrist wanted me off of all psych meds, except that he made sure that I always had a current bottle of Depakote. If I got an infection and started to "go under" fast, our plan was that I would pop Depakote. This was a long time ago, and I can't remember the dose or how often (times per day) I took it during flares, but it worked great. I never had to take it for more than a couple of days. I went on like that for years, probably taking a total of about 15 Depakote or so per year, as needed. The strange thing is that mood stabilizers, like antidepressants, are said generally to take at least several days to start working. That was never the case for me - they worked within a day at most, the Depakote worked definitely within hours. I used Depakote for mood problems the way one might use tylenol for a headache. There is nothing that prevents one from taking background antibiotcs AND Depakote. Probably wasn't until 10 years ago that I stopped keeping a bottle around "just in case."

He was 43 pounds last time he was weighed, so this is perfect, thanks! I don't think we would need it for too long. We had a real problem after he had major dental work without sufficient pre-treatment, and I noticed we could keep him manageable just as long as the ibuprofen lasted. I felt funny about pumping him with ibuprofen a couple of times per day over a week because we had never done that before, and I wasn't sure how much was too much. I was only giving him 150, good to know that I have some room. I have been wondering if Advil might help the hypersensory touch issues. This morning, one of his "comfortable" pants "suddenly" had a seam that "wasn't there before" and that "hurt." Another outfit bites the dust. No other OCD or anything going on, though.

Ibuprofen helps my ds6 quite a bit when we've used it e.g. after dental work. I've been meaning to look up how long and at what dose a kid can stay on it, and whether the bottle dose is really the best dose. I know arthritis patients pop it like candy over long periods of time, but I don't know in what ways kids may be different. I'll be following here to see if anyone has anything good information.

I'm sure I'm "hypervigilant," too. So be it. I wish someone had been hypervigilant on my behalf as a kid. I know families with kids that clearly have these issues and that aren't hypervigilant, and their kids get smacked upside the head at the dinner table for refusing to eat. Just so you know, we got our son him covered under "Otherwise Health Impaired:. If your son has ever received an OCD or Tourettes diagnosis, that would work too. Had to LOL at the "hypervigilant". My ped's report says "mother wants him on antibiotics all the time because he is always sick and this is her plan to get him well". Sigh.....

Mine are in school, but they are little (3 and 6). Around here (geographically) anyway, you see plenty of kids going in and out of homeschooling. At least in our district, there are clear options for stints of homeschooling while still maintaining connection with the school district. The district website even has a whole section on it and the logistics are pretty simple. We had friends who did this in NY, too. It is not too uncommon with illnesses, or e.g. families in the entertainment industry that travel a lot (also see a lot of that in LA/NY). I think it will depend a lot on how cooperative your school is, but I do believe that they are required to make some kind of effort. Re. onlookers, I have struggled with this sometimes. If one of my kids has a breakdown somewhere or sasses uncharacteristically, and I explain to another parent or teacher that he is having a reaction to an infection, I do wonder if they think that I'm just a lousy parent looking for an excuse for my kid's "bad behavior" or that I'm trying to "medicalize" an emotional/psychological issue and overmedicate my child rather than deal with it. I have had some good responses, though. Ds6's teachers have all been great, as have his friends' parents. Truth is, I think that it helps spread the word about the condition, which is something that we need. I explained it to his kindergarten teacher last year, and she was very grateful because she had noticed, during the one episode he had in K, that he very suddenly became a dramatically different child. She said that normally they would start questioning re. an evaluation/investigation of some sort in such a circumstance because they assume that something traumatic happened in the kid's life to elicit such a pronounced, sudden change. But then, 2 weeks later, "the lights came back on" as she put it, and he was back to being normal. It helped her a lot to understand the situation so that she was able to support him during it. His karate teacher, on the other hand, sees it as a discipline issue, and that sucks. But what can you do? There will always be the unenlightened. You can't really blame them. As a society, we are not very good at thinking about behavior medically - we are too stuck with Freud. Nevertheless, the unenlightened are just wrong in these cases. I stand my ground and don't negotiate with them on the explanations for the behaviors. I do explain the facts if it seems called for, since I'm 100% confident in the facts and my feeling is that the only way to get rid of the stigmas and misunderstandings is to get the information out there. That's also why I'm very plain about having the condition myself. If we don't want it to be shameful, then we can't be ashamed of it. I want my kids to see that I'm not ashamed of it. I also think it helps my ds's self-esteem when they see me just rationally dealing with this as a condition, not a weakness. We speak of it as "allergies" to "certain kinds of germs." My kids also get dermatologic manifestations and drippy noses when it happens, so it really does look like a classic allergy. People -- even little kids -- understand allergies, since so many have them, and they are not seen as weaknesses. Luckily for us the behavioral issues have been relatively mild and infrequent since diagnosis so we haven't had to make decisions about e.g. quitting karate. Re. explanations about being out of school: he has a stubborn infection that his immune system isn't dealing with properly, and he's having a bad reaction to it. Period. If anyone chooses to believe otherwise, well, at least you have tried to educate them, and your son has seen that you aren't skirting around the explanation as if it's shameful, and you aren't deep down questioning whether it may actually be a weakness on his part. Sooner or later I do believe that this kind of thing will become part of public knowledge. Rambling reply! Another emotional area for me.

Or, the tests, most of which are presumably antibody tests, might be negative if you're getting the infections but your immune system is not competent to fight them properly - doesn't produce or maintain the expected immune responses.

I believe that my Dad has had some real issues with mycoplasma. You know a bit about him. -- Momto2pandas in Los Angeles