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April used to be such a great month :-( before PANS/PANDAS

Thank you to all. I was just curious if anyone had a negative experience i.e an increase in tics/emotional disturbance. As always constantly tweeking-- This was the latest supplement added to his regime a while back. And although he did report an overall increase in energy he also is now in the midst of a several week flare. That being said this is his classic time to flare-- I am fairly sure histamine allergy component. I don't think it's the CoQ10 but was curious to know if anyone had experienced a flare after adding. We are on lower dose-- 50 mg qDay.

Am curious to know if anyone gives CoQ10 to their child and if so what is the reaction.

Thank you everyone. I've added motrin for now and will see what happens. I did not re-test him for strep as I wasn't sure why I should. I just assumed he'd been exposed again and was flaring which is why i restarted him. I also know that the zith will help the infection in time. But it is the anti- inflammatory property (also from zith) that I was hoping would help him more immediately. Instead, he got worse. The pill is white. My son does react to food colorings. Good thought. I may consider prednisone if it continues-- or adding a second agent. Hopefully the motrin will help until we can get a good build up of Zith in his system. Thanks everyone for your replies!!

Hi Everyone, We were on a regimen of Azith 2X week for many months. We had a few hiccups along the way and would increase to daily dosing during those events. Everything was going very well. Last month we took my son off antibiotics completely. He did very well for a month but last week - boom. His anxiety and compulsions were way up, math skills way down and he was a general mess. So we have restarted him on Zithromax. It's day three. His compulsions are actually better but he is generally worse--- now acting like a 2 year old (he's 10). High pitched squeaky whiny voice; trouble with school work and processing...phobia's increasing... anger. I don't know if this is PANS worsening or herx or what? I assume we just stay the course and hope for the best? In the past he's tested negative for everything except strep. What would you do?

If there is something like this coming out soon, it would be really great to know about it in advance. PANDAS (or PANS...) docs and more importantly parents could head it off at the pass. Would love to know the names of the "several prominent doctors."

Hello All, I have tried to search the forum for my answer but can't get the search function to work. For anyone using NATURAL CALM, magnesium--- what have been your experiences? My son does not tic-- he is primarily an OCD flare type. He is currently NOT in a flare but does have some underlying general anxiety. He is on Azith, twice a week and general vitamin with extra B's but no magnesium. Last night I decided to try NATURAL CALM to see if it would help him unwind a bit. As said, he's not in a flare but is edgy. After giving the magnesium.... He woke up in the middle of the night to go to the bathroom but was able to go back to sleep. This morning though. he seemed oppositional and angry?

Interesting points. I do wonder often if this is a tip of the iceberg scenario. One could make the argument that many forms of mental illness may indeed have an infections trigger. Maybe we've been missing the boat all along. My aunt was a happy, successful, healthy young woman who had just completed college and was a clerk in DC. Literally over night she went crazy and became a raging schizophrenic. The rest of her life was ruined, battling the disease and the medication simultaneously. What if this were indeed an autoimmune type response? What if her own body was reacting to some trigger? Sad to think about in retrospect. I wonder if they contain PANDAS/PITANDS/PANS to pediatrics for the same reason it was originally contained to strep. They need to keep the study groups small and tight and consistent in order to have reliable data. Or perhaps it is because with these particular studies, a percentage of PANDAS pts. did in fact go into remission after puberty-- thereby negating the possiblity of a post pubertal onset--at least according to the study? Is there ANY research being done for adults with OCD-- anxiety or otherwise?

I believe I read somewhere that Swedo said she's always known that there were other triggers. It was strep however that she researched and "proved" hence the name. On some level the name is indeed an obstacle because if you cannot "prove" a strep connection many doctors will simply dismiss the idea. As I watch the great parents pushing this effort forward I am in awe of their talent and determination. I do wish however, with all the media attention, we could highlight "PANDAS" but state that it is soon to be renamed PANS for reasons xyz. Interesting to also note that we NEVER hear about PITANDS in the media-- yet ironically it seems many of us do in fact fall into this category. PANS would be a nice umbrella. My DS has strep as a trigger-- but it is certainly not the only one.

Ditto. Our DS10 is in advanced math class and normally a whiz. During a flare however, "overload" is the problem. Complex, multistep problems which are normally not a concern become overwhelming with his first glance. During a flare, I have to sit by his side as well -- and help him break it down by asking him to repeat the steps. It's not that he doesn't know how to solve the problem--- it's that he won't even attempt them during a flare. For us it's not a decrease in math "skills"-- but rather an increase in anxiety-- making his normal focus completely lost.

sorry for all my typing errors-- sending this from a phone...

We are on Zith 250 Mondays and Fridays. I will look it up to be sure but I believe it is okay because of the long half life property. From what I remember it is 11-14 hours when you star. But if you build it up in your body the half life actually gets longer. So once you achieve a steady state, you are covered without re-dosing every single day. We also increase to daily if we have reason to believe he reaction from exposure.

I should mention that his last flare was all OCD behavior (counting, intense need for symmetry, evening up)...

Saw a similar thread regarding hyperactivity from a tooth coming in. This got me to thinking about hyperactivity in general. PANS symptoms can morph from OCD to tics to impulsivity to hyperactivity and sometimes all of the above combined. My DS10 right now is reacting to something (he's been fine since August)-- I think he's reacting to his brother's recent viral infection. He's got NO OCD issues right now-- he is just really, really hyper!. I have given him motrin, and switched back to daily antbx (just for anit- inflammatory purposes). I have upped the exercise. But he's so hyper that it made me jump over to the ADHD forum tonight to see what else is out there. I am hoping of course this will settle back down soon but if it doesn't-- then what? Do we consider some other line of treatment to treat hyperactivity? He's tearing through the house, falling down, talking incessantly with a high-pitched voice...

I have been where you are! It is a scary place. You are wondering if this really could be it? And if so, you are kicking yourself for not knowing sooner. But if this is not it-- you are devastated because things seem then utterly hopeless. All and all, it's driving you crazy. I have been where you are! I wish I could say it gets easier. In some ways it does as you learn to settle in and roll with what you know. The frustration and the not knowing will be the hardest part and that never goes away. The pattern teases us. During the good periods- we start to enjoy our little ones again. We start to think, oh maybe it was all a bad dream or maybe this is finally over. And then when a bad period returns, we must grieve all over again. Again and again, and then more questions, more hurdles. My ds at age 8 was also diagnosed with "regular" OCD. His dr. didn't even consider Pandas despite a rapid and dramatic onset. This was 2 and 1/2 years ago. In retrospect, I believe my sons first "episode" was at age 5. At age 9 1/2 he began the spiral again and I wrote to this board. The forum here is unbelievable! I was urged to seek out care and I did. I am now convinced. He responds to anbx!! This is not to say there are not hard times in between. But I know the two people you speak of. When the "bad" one is here, it is awful. The intensity in the entire household rises. My son becomes hyperactive, rages and very emotional. Then we have the OCD, counting and patterning. It is heartbreaking to watch! Regarding, "can a kid with PANDAS (or PANS as it will be called), "hold it in." I asked the very same question and the answer is YES!!! Then they explode with compulsions at home. Now something controversial. I feel like one day, we will find this common link to all types of "mental issues", including "regular OCD." The strep or other irritant connection is only the tip of the iceberg. So YES, consider PANDAS (PANS) for your daughter. I don't know how people feel about sending you to do a phone consult with Dr. T or Dr. K. I did and it was helpful as a first step. Not sure if things have changed in that recommendation and I'm not familiar with docs in your area. Hopefully someone will respond with step-wise advice.

Well this is when it always starts! I had been feeling grand as ds was doing quite well. We do have him on an unique regimen--and I'm not sure if it's appropriate or not. He is on Azith. Mondays and Fridays which was started at the beginning of school. Since he's been doing well I didn't want to mess or tinker with these meds so we stuck with it. Now, ds2 is sick (viral) and pandas ds is raging and hyperactive this week. The Dr. who originally Rx'd for us in August has relocated! My first inclination is to switch Pandas son to a full course of antbx and ride this wave out. Do I ask his Pediatrician switch to Augmentin or stick with Azirth.? Have already started the motrin :-) How I wish I didn't have to be in the drivers seat!

Hi Everyone, I've read some prior threads relating to histamine and Dr. T's theory. I know some of us have kids with low histamine and some with high-- and some with no relationship either way. So I am just curious. I'll read more about it to try to truly understand the mechanisms-- but as you know that will take some time. For those of you way ahead of me-- in your thought process... My ds frequently reacts by flicking his ears, developing red ears, or rubbing his eyes/itchy. We are not sure of the allergen as it doesn't seem to be just one culprit. We avoid all dyes et cetera... He had allergy scratch tests and bloodwork a few years back indicating that he was allergic to nothing. He gets very hyper with benadryl. Given his clinical picture-- does he have low brain histamine or high-- or does the picture not make sense?

Just following up on this thread. Someone posed the question about Dr. T. and his thoughts on histamine. I spoke with him today. He said he feels like histamine could be a player given the new very preliminary finding linking tourettes and a histamine gene. He also says he's seen two groups of kids: those with low IgE, low basophils, scratch tests negative-- but with sxms of allergies OR those with crazy high IgE and no sxms. So I guess the answer is -- who knows? Either way- both groups-- don't "test normally" with standard allergy screening. What a roller coaster...

I've read some discussion from 2009 on the signif of failed immunity after Prevnar. Buster's position in 2009 was that you can't really know if its signif. unless you vaccinate again and re=test the response. I am wondering what is the latest position on this? We just now got our lab tests back and "failed" 6/7 Pneumococcal antibody titers. After reading Buster's position I'm not sure this finding really matters at all. We also have "moderate IG 2 subclass deficiency" and "significant IG 3 subclass def." I've read that IG subclass 2 is most common in children and IG subclass 3 is most common in adults. I think I remember reading that a high percentage of people are "deficient," but I can't track down that figure again. So again, I question the actual signif. here. Other than to say it correlates with a history of frequent infections. Also, low normal Ig E. And I believe an allergy component. What is the latest in terms of the statistical signif. with these tests? I've been to the links suggested by PANDAS NETWORK and can't find anything past 2009.

You know I have NO idea. However there is no question in my mind that allergies and/or the way the body reacts to allergens is very much involved. My son scratch tested negative for pretty much everything when he was 5. But at age 10 he clearly reacts to seasonal changes with fairly pronounced, traditional symptoms (puffy eyes, nasal issues). His two major PANDAS flares have also each been in the spring. It's related, test or no test! You may be on to something. Perhaps the traditional testing does not capture our children's unique responses.

THANK YOU!

I'm sure there is a thread on this but I can't find my specific answer. To me it seems that PANDAS children may start with a trigger of strep and then possibly morph to PITAND since they respond to other triggers (mycoplasm, flu, lyme, allergies...). Can someone explain the difference between PANDAS and PITAND? Since the two are so very closely related, are we doing ourselves a disservice when we heavily promote the acronym of PANDAS. Why is it that the larger umbrella of PITAND is not promoted (at least in comparison to the subset PANDAS).

I have been reading this board for a few weeks now and I've looked back and all the interesting stories. Sometimes I wish it were mandatory to post follow ups-- because I find kids EXACTLy like mine-- but then they don't post anymore...and I think.. well what happened.. are you cured? was it PANDAS? Unfortunately the more I read the more I seem to forget. I think that I am now just completely exhausted and probably still grieving the loss of an easy going/laid back family. I know not to do it -- but sometimes when I'm out and I see a kid that's so naturally together and 'with it" -- I start with the "why us?" These kids stay up late, eat pizza and doughnuts all day, and are completely fine! When my son was 7 we did the OCD thing-- but then the compulsions went away for almost 2 years. In the meantime I had learned to accept that my ds was an intense child and had certain quirks. But since IT (whatever IT was) was no longer glaring at us-- I could handle it. I knew I had to make sure he got enough sleep, enough excercise, nutrition. I knew I had to keep him balanced more than most parents have to do (I knew because thus far my other son is much easier and more flexible). But I could handle that. Now with the return of the compulsions I feel so overwhelmed and the sadness comes flooding back. He improved with Omnicef but the compulsions are still present. It's this "just right OCD-- tapping-- evening up--retracing steps--" His body seems to be so hypersensitive. It's better- but he's not cured and so we go on.... We had a phone consult with Dr. T and had tons of labs drawn on Monday-- no results yet. In the meantime, as I wait, I keep thinking--CONSTANTLY thinking-- seasonal allergies, food allergies (he's been getting the red ears and he's also flicking them a lot), fish oil, probiotics, antibiotics, what is going on....Should I do the elimination diet, should we go see an allergist, an ENT (he has noisy nose breathing), should we drive 3 hours to a PANDAS doc NOW-- or wait to hear back from Dr. T. first. And what does "better" actually mean anyway? He's functioning. I'm the one losing it. I don't see that this roller coaster actually ever ends-- for those of us with later diagnoses (I'm assuming if I had caught this at age4 or 5 or whenever the initial insult was-- we'd be in better shape). I guess what I'm asking is-- how do you all do this? where do you get the strength?

Hi Everyone, I look forward to the day when I can start helping others. Sadly, I'm still very new to this! I recently posted that my ds10 had worsened while still on antbx (he was away with his dad on a father/son trip). This was day 7 omnicef, when sxms began to return after exacerbation a week prior (keep in mind his cultx and titres were WNL-- his brother had positive strep with fever... ). I found out today that his dad had not given him fish oil for the entire 3 day weekend. Our son has been on fish oil for several months (even before compulsions started). Oddly enough--- I had recently switched brands (he's on nordic naturals) and had missed a few doses myself a few months ago. I thought that overall the fish oil helped calm him (I thought). But since switching the brand I noticed that he had a BLISSFUL day-- the day after a missed dose. PANDAS has forced me to start tracking everything- I had not yet-- determined a real pattern. Sooo my question: in your experience does fish oil-- help (reduce inflammation) or hurt ( i.e. cause increase sxms-- read on Tourette board that it did cause increase in tics)? Could the fish oil lapse this past weekend cause the compulsions to come back-- despite still being on antbx. Lastly, if you like fish oil- which brands do you prefer?

Yes, I trust that he is getting the right dose at the right time and no he is not with his brother. BUT we are not giving a probiotic. Dr. said to do that if he were to stay on antbx longer than 2 weeks??? But we can add one. He had been eating yogurt everyday (prior to this whole PANDAS journey) but Dr. said most yogurt had strep cltx in it. So we stopped that (seemed silly to me at the time and dr. admitted that it might not be a problem--- but better safe than sorry). Good idea about the motrin-- I'll call them tonight and add that too. Luckily he will back tomorrow night. He was soooo bad last week before -- I just hope he doesn't come home in similar shape. Again, I still have trouble accepting this diagnosis-- and still wonder if its "regular" OCD just starting to wax and wane. But I can't ignore that he didn't have an episode for over a year. And his brother had strep. And he did -- at least initially respond to antbx. So we continue on the journey I guess. Logging everything (and driving myself insane in the meantime :-)