Stephanie2

I guess it was my post recently that scared you...sorry! We did 30 day taper and it did take the tics away (95%) so I guess it was worth it. Yes we had the worst psychotic rages I have ever witnessed. 4 hours one night (but that night I gave ativan and I think it doubled the rage). As the taper went down, so did the rages, and risperdal helped us get through it. My son is now off the steroid and he is also off the risperdal. We have only had one rage since then and I think it had more to do with a gut bacteria that developed recently. I do fear that we did some permanent damage, but so far it is not looking like we did. I guess I would have to say that both the tapers we did with our sons (ds6 and ds3) were successful in that we got the outcome that we were looking for and it seems to have lasted (so far). We are now managing him with weekly azith which is keeping the pandas symptoms 95% gone. Hope that helps. Sorry if it scares you. Most kids do not experience that level of psychosis with steroids. Oh, the other thing is that we (doc and I) think it was possible that it happened due to a drug interaction (ketoconozole and prednisone). the keto raised the steroid in his system too high...

Bumping this up since I got so many PM's about it. Networking...

In terms of autism, we have had tremendous success with biomedical but it is constant upkeep and expensive. In terms of pandas, the one thing that helped the most is zithromax, followed by spironolactone and LDN. My 6yo had one mid-dose IVIG infusion and it helped but only temporarily. Steroids have also helped. We do a lot ot support the immune system and methylation pathway, mitochondrial dysfunction which I think all need to be managed to help the body to deal with infections. We are out of the acute crisis of pandas, but have found that the chronic use of antibiotics just wreak havoc on our boys' guts and therefore we are looking into other alternatives, including the treatment of lyme and/or homeopathy.

I just registered! Disclaimer: the intentions of the participant to actually participate are subject to the occurance of the following: strep, klebsiella,or clostridia.

I have been in touch with his office several times recently. He has taken on an interest in PANDAS. I have been in touch with one parent so far who has had succes in terms of pandas. Looking for more success stories on other forums. Oh, the spelling: Pierre Fontaine, and his assistant, Angelica (can't remember last name). I'm waiting to get more info from them... By the way, while your unsuccessful attempts at homeopathy are disheartening, I had the same experience with my first DAN doctor. He was able to help my youngest b/c he did not yet have pandas. But my oldest he was unable/unwilling to help b/c he didn't understand pandas. I later moved on to two other biomed docs that really get it. With this disease, I think you have to have the best of the best no matter what route you take.

I guess I am letting the cat out of the bag regarding where my current research is leading (not that many of you will be surprised by my interest in natural remedies). Here is a compelling article written by the Homeopathy Center of Houston about PANDAS (they are popular within the autism community and tend to take the sequential approach, from what I can tell): http://www.homeopathyhouston.com/homeopathy-blog/ Check out the second blog as well (underneath the pandas blog). Will make you cringe. Ok, upon further review I see that it is not Sue Swedo's quote, forget that (I can't delete that from the heading). Still an awesome read!

I was just getting ready for bed and I thought of a good one. When I told our ped that ds2 (at the time he was 15 months and had eye tics and sudden onset rages) has now developed pandas, she smiled and said, "oh, kids this age don't get pandas. he is just mimicking his older brother". I told her that his older brother never ever had eye tics so where else would he have learned them? She just smiled at me as if I had 10 heads! He is now about to turn 3, she has witnessed me bringing him in for strep test based on sudden behavior changes, he tests positive and she still thinks it is impossible for him to have it before the age of 3. BY THE WAY, WHO IN THE WORLD DECIDED THAT YOU HAVE TO BE 3 TO HAVE PANDAS?? MY OLDEST WAS 20 MONTHS AT FIRST EXACERBATION. THEY REALLY NEED TO CHANGE THE GUIDELINES ON THAT!!!!

For anyone interested in homeopathy, Pierre Fontaine will be speaking. Not sure if he will cover pandas but he does treat it.

After sudden onset severe OCD in my 2yo (all doors had to be closed, all day rages, etc.), 36 hours later I brought him in for a throat culture. I told the walk-in doc what had been happening for the past 36 hours (and by the way, by now I had medicated the kid): doc:"well, he doesn't look sick" me: "he's not sick, he has sudden onset severe OCD" doc: "well, he's acting just fine" (after it took 3 of us to hold him down for the cultures which he raged through) me: "he's medicated" and after a faint, pink line shows up on the rapid: doc: "well, this faint line means that we don't really know if it's strep" luckily the guy gave me the antibiotics and within 36 hours my sweet boy was back. unfortunately, he refused to write on the report that it's strep, so still to this day we have no documentation on my youngest of pandas.

From MY psychotherapist, whom I hired b/c of my boys' ongoing pandas and gut issues: "WHO gave you this diagnosis (writes down the names of our DAN doctors??? I'm sure that will go over real well). I'm going to talk to a psychiatrist about this disorder, I have never heard of it" said with a look on her face that says "lady, you are the problem, not your kids". She proceeded to tell me that I need to take a deep breath and not become emotionally involved when the kids have rages/meltdowns. Walked out, never went back. For gosh sakes, it's partly the doubters that brought me to the therapists office to begin with, now SHE wants to treat me like I'm crazy, too??? Aren't they taught to not blame the victim? Oh, and there's the classic from my mom "I'm old school, back in the day we would just discipline our kids, not hire psychologists and obsess over them"!!!!!!!!!!!!!! To this day she thinks I'm: a. an incompetent mom b. making up problems about my kids for attention c. going completely broke for the fun of it

never heard of a direct relationship of strep and psoriasis, but I believe that psoriasis is really an autoimmune condition, but I don't think the dermatologists will admit to that. Kind of like parkinsons and MS have been found to be autoimmune in nature, but they don't treat it that way.

Like I always say to my husband, "these doctors are doing such a fine job with the children of today" (sarcasm) It's almost like the landscape is changing faster than the pediatricians can keep up (or want to keep up) but then when us proactive moms try to take the bull by the horns we are scorned upon. They are just so incompetent and I'm not really sure who's fault that is. I don't necessarily blame it on them, they are doing what they were trained to do. But can't they see through that? Are they, themselves, frowned upon from going against the grain? I can tell our ped is dying to "go against the grain". She would talk out of both sides of her mouth when it came to vaccines, but when push came to shove and she saw my youngest rapidly declining, she literally told me under her breath that I should wait a little while before I do more vaccines. I was shocked that she would admit to such a possibility b/c she always seems so concerned about her image.

My 6yo was placed "near" the spectrum (one point away on the CARS eval) during a non-pandas time. I think with my 6yo it is ALL related to infections. when his infections are managed, he is 100% normal. The problem with pandas is that when we treat it with antibiotics we create the following in the gut: clostridia, yeast, klebsiella and the list goes on. So, thus far, treating pandas at times is almost worse than not treating pandas in terms of autism symptoms. Still trying to strike the balance for this poor kid. Do I think pandas caused his autism symptoms? a little, but I think clostridia makes him look like he is further on the spectrum than anything else. Oh, and he did have a reaction to MMR (high fever, rash) and it was about 2 months later that he had his first pandas episode, could be coincidence. My 3yo I think had multiple issues going on. He was more severe in terms of autism symptoms (reduced eye contact, lost all babbling at 4 months, still trying to recover speech, no initiation of social interactions and not really any response if we initiate interaction - just sit there and smile back - at least we had THAT). I think most of his problem is also infections, but he also has the following that pose a problem for him: mitochondrial dysfunction, MTHFR gene mutation, chiari malformation, hyptonia (prob related to mito), etc. He did indeed have a reaction to DTaP (which was the only one he got that day) which is about the time he lost his speech and went backwards in physical ability (could not hold up his head - but did respond well to PT at that time). Do I think PANDAS caused his autism symptoms? No, I think he appeared autistic before his first pandas exacerbation. Do I think kids with underlying biomedical problems are more "at risk" for pandas? yes. The DAN protocol has done a lot for these boys. They have much more functioning than they did. But thus far, managing pandas has proved to be the hardest thing, and the side effects from the antibiotics are quite debilitating.

www.customprobiotics.com "D-Lactate Free Formula", has no dairy or strep. vsl#3 has both in it.

I just want to say that when my boys get clostridia, sometimes they get green foul smelling stools. But sometimes they do not. The behaviors are always tell-tale however, and vanco or flagyl is a breath of fresh air when necessary. Also, to prevent future clostidia relapses, culturelle and sac. boulardii are very good at specifically targeting clostridia. I am currently giving my boys 3 of each of these per day, on top of their mega dose regular probiotics. Last, the OAT test that you speak of has never been wrong for my boys (meaning if clostridia shows up, then vanco makes a dramatic improvement in bahavior). The only exception is that one time the clostidia marker came back NORMAL, but another seemingly unrelated marker came back elevated. My biomed doc said that based on this other marker and my son's current behaviors he believed that he had clostridia. We started flagyl and within 3 days I had my son back (he had been in very bad shape for 3 months, this was no coincidence). So far for us the OAT test always seems to reflect my own observations and leads us to the proper treatment with intended outcome. I do find it strange, however, that she would have clostridia so bad that it would affect her behavior so bad when she had never been on antibiotics before. I will be curious to see if she responds to treatment.

I haven't read the rest of the replies, but speaking from experience here go heavy on probiotics. I did not do this and my boys guts have taken a turn for the worst, now they are on almost chronic antifungals (diflucan, ketoconozole) and even other antibiotics to control the gut bacteria that were a result of the initial antibiotics for strep/pandas. My boys have recurrent clostridia infections, which cause a whole new set of behaviors. when we first started antibiotics my boys were on 40-80 billion cfu's of probiotics per day. for some kids that is enough. For my boys we had to up that to 1 TRILLION cfu's per day. Point is, stay ahead of the gut damage...don't be afraid to go heavy on probiotics (must be taken away from antibiotics).

Speaking of fluoride, it is one thing to "apply" it to the teeth, it is quite another thing to "injest" it (ie drinking water). Contrary to popular belief it is very toxic. I have been purchasing drinking water from whole foods (reverse osmosis) and I cringe every time I run out and I have to give tap water to my kids...

This screams yeast to me (especially the silliness). One way you could test this is by giving him a couple activated charcoal capsules. If it goes away for an hour or two then you know it is gut related (most likely yeast). Have you had him tested? You would need to do the following test (or one like it): http://www.greatplainslaboratory.com/home/eng/microbial_oat.asp

Wow, amyjoy! We have done a lot of that as well, and the one thing I keep finding myself being forced to go back to is azith prophylactic. We also get the clostridia, gut issues, etc. Would you mind telling me how you healed the leaky gut? Something I need to work on around here. Starting quercetin soon, considered SCD, then said "nah...". LOL! I would also like to hear about cranial sacral. Considered that for ds6, a little nervous to try for ds2 due to his chiari malformation (although maybe it would help). We consider what we do to be integrative b/c we do have to rely on medicine, though we prefer not to. I also want to mention that I came across a woman who claims that her homeopathic practitioner has helped tremendously with pandas. His name is Pierre Fontaine out of NYC. I contacted his office and his wait list is backed up until Oct 2011! He trained another woman to work with him and she is available much sooner. Although I am starting to look into lyme/llmd's, I am strongly considering Pierre or his assistant. (I believe he is highly regarded within the autism community). When I contacted their office, they knew exactly what pandas was and acted like it was old hat for him...

i have heard of ringing in the ears as an azith side-effect before, but it is also a symptoms of lyme. could it be a herx reaction? I guess it could be either.

So, if you don't mind what did you do next? Bring everyone to an LLMD? Have you considered following this up with provocation testing? Maybe in your mind you do not need the positive bands, but doesn't your insurance company need that for reimbursement? Where are you currently in treatment? Any results yet? thanks

I see that this is an old post and I haven't read any of the responses. Just wanted to say that hands down I believe her pandas has come back (I have had experience with the spelling of words, that is a compulsion - pure OCD). I want to caution you that the longer this current exacerbation goes untreated, the more invasive the level of treatment that will be necessary to bring it down. Our last one that went untreated required IVIG in the end. I have since learned my lesson and I get on top of strep within 24 hours whenever possible. Sorry if this is redundant or you have already done something about it...just wanted to alert you...

That's a tough question to answer for us. I know when she has a flare, that's unmistakable. But, I'm not sure what remission looks like. Her pediatrician (who came on board when she was 10yo) and I think that she's had this problem since infancy and it wasn't properly treated...her development is awfully messed up. OCD is the norm for her. What we consider "doing well" is that we can work on her OCD and it doesn't completely incapacitate her. When she flares, anything that interrupts O/C results in very violent outbursts of aggression, mostly toward herself, but also against caregivers. It is always accompanied by bed-wetting. So, before this flare, we had not had violent episodes for 3 or 4 months. She had a flare from exposure last August and it took us several months to get it back under control. I did not use these supplements for that flare. I guess I can safely say that she was trending in a positive direction before this flare. Peg, a couple things come to mind regarding that her OCD never fully remits. I know some ppl believe that for some kids the OCD becomes a "habit" and after pandas goes away you then have to do some CBT to clean up the mess. I, personally, do not believe that to be the case, only b/c when my boys are out of pandas they are fully out. NO ocd left whatsoever. And they have had pandas since the ages of 15 and 20 months so you would think at least for my 6yo that OCD would be ingrained by now but it's not (but we are talking about a 6yo vs. a 16yo, so maybe she has been dealing with untreated pandas long enough that it IS a habit). Also, have you looked into lyme? Seems like when the OCD does not fully remit, ppl are finding out that the presence of lyme and/or coinfections are the problem. Lastly, in the case of my boys, clostridia and/or klebsiella causes mild OCD (and severe rages, but that's another topic). I know you do things to fight yeast, but have you ever had her tested for intestinal bacteria? These are bad bad bad bugs in my house. My 6yo turns autistic overnight with clostridia. I call it "autism in a box", not to make light of autism at all, but the regression is quite immediate and astounding and alarming. And the recovery (when vanco or flagyl is started) is equally astounding. Here's an example, when he recently had clostidia (went 3 months undiagnosed b/c one of our docs misinterpreted the lab report) he was doing the following: standing in the corner, putting hands over ears and huffing air forcefully through his mouth over and over with anxious look on face, lost all eye contact and social skills, while shopping sitting on the floor staring at the ceiling and saying random inappropriate phrases over and over again, sitting under the table and looking confused when asked to come out, just completely lost all around. I thought I lost this kid forever this time. Then another doc picked up on the clostridia markers, started flagyl and all the above behaviors disappeared in 4-5 days. He has completely normalized in every way. To be honest, I just don't get it...something you have to see to believe (and I still shake my head in disbelief that clostridia could DO that)! By the way, as far as I can tell, my 2yo does not react as strongly to clostridia, just some aggression and brain fog - I don't "lose" him like I do my other one. Ok that was a long way of saying that kids with autism or more prone to these infections so maybe that is something else to look into in your spare (heehee) time...

Not sure if anyone knows for sure, I can certainly say that I don't know for sure. But here is what happened recently. My sore throat came back after stopping azith. Right away, my both of my boys' pandas symptoms flared. I did not start antibiotics right away b/c I wanted to give my body a few days to clear more azith so that I could go get an accurate strep culture. My 6yo son continued to flare (my 2yo spent a couple days with grandma, his flare stopped) but I knew he wouldn't get an infection b/c he was on 2 antibiotics. But he was sleeping inches away from my face during this time! I finally got the culture, and then got back on something to fight off strep. May be coincidence but within 24 hours his pandas symptoms stopped. Who really knows, but that is what I witnessed.

From my understanding of inflammation, once it gets sky-high (like an exacerbation that went on for a long time untreated or not treated "hard" enough) it needs to be knocked down with something like IVIG or a steroid taper. Adding antibiotics may not be enough to get that chronic level of inflammation down. After the inflammation is brought down, then one needs to be vigilent when strep hits, start antibiotics ASAP before inflammation has a chance to get too high again. So prevention is what it's all about. Having a script on-hand ready to go when you think strep is in the picture. With all that said, I'm not quite sure how you do that when you don't know if it's just exposure or an actual infection. Personally, I think it depends on the severity of symptoms. There are times when I would bet my life on the fact that one of my boys has strep and I am usually right (pos strep culture). I think it just takes time and experience to fine tune your instincts on this. According to one of our pandas docs, you can't take the chance on waiting for a 48 hour culture to come in b/c then the brain is just sitting getting inflammed. Once you think there is step, you start the antibiotic. This is just my 2cents, taking into account what our pandas docs have explained. Once you get the inflammation down, say with IVIG, you learn to keep it down by being vigilent with starting antiboitics the second strep hits, etc. Also, the use of other anti-inflammatories (we use spironolactone, LDN, and when necessary, steroids). Early intervention/prevention is key.