Stephanie2

OMG, I only have 2 pandas kids and when they both exacerbate at the same time I completely wig out! I am so sorry! You asked if OLE would break the carrier status. I have no idea but it MAY reduce the level of strep enough to help out the situation in the meantime...don't waste your time with substandard OLE, get the good stuff: http://www.ourkidsasd.com/products/?s=olive+leaf I have been told that you need to use rifampin along with another antibiotic to break the carrier state.

My DAN doctor says yes, many websites say no. Not sure. I do give with antibiotics when needed and everything seems fine...

I am using OLE in place of antibiotics. The reason I decided to do this is b/c my boys were not able to handle the side effects of the abx (diarrhea, yeast, clostridia) and also b/c five people have caught strep down here in florida in the last 6 months while on azith (meaning 5 people I know, including my 2 boys). I started them on augmentin and it pulled them out of the worst of the sudden onset symptoms but it only got them about 80% better. So I switched to OLE adn the remainder of their symptoms vanished within 3 days!! We are going on 5 weeks now of no abx, only OLE...

I'm so sorry. My first son was also denied sevices and I went to have 2 evaluations. Both times she picked up on his "aspberger, adhd and anxiety" tendencies but said that he would do just fine in the classroom (oh and back then he had a stuttering problem...no speech therapy was offered). Gee, and how does she know that? Because he was able to survive a one on one evaluation that was in a quite room without too many demands and sensory stimuli? Unfortunately, these children usually do not get services until they get kicked out of preschool or they are severely disturbing the classroom, or it is effecting their grades. Can you get him kicked out of preschool? Pull his abx for a couple weeks and see what they think then (so not funny, and I don't mean you should REALLY pull his abx - LOL!)!!!

Well, as you know I am giving OLE with great success. But I also just picked up some silver to add into my yeast rotation soon. I bought the drops. I, too, have heard that silver kills strep. I remember once reading on the tourette's board a woman who posted that she was going to try a combo of silver and grapefruit seed extract, just to see if maybe his tourettes was caused by pandas and she came back in a few days and said that it was working! I don't know as much about silver, but here are my thoughts on OLE. I have heard that it is anti-inflammatory, antioxident, immune support, antiviral, antifungal, etc. I am really starting to wonder if it the anti-inflammatory property that is making my kids do so well. Like I said, when I reduce the dose the symptoms come right back. Makes me think of inflammation, not just strep. Also, I think it is doing a better job than abx were doing recently b/c we have an abx-resistent strain of strep, which can't be resistent to OLE. I don't think you would have resistence issues with silver, either. As far as silver being toxic with the blue tint in the skin, I have heard that you would have to use MASSIVE amounts for a very long time to induce that effect. Although, I do have that thought in the back of my mind b/c I don't want to kill strep at the expense of creating smurfs!! LOL

I agree with fixit, his face got pale b/c he was nauseous. OLE is known for doing that, so many ppl recommend taking it with food (oops, did I forget to mention that?? ). But then there are ppl/sites who recommend it on empty stomach b/c herbs are more effective that way. When I first gave it to my boys they got nauseous so I try to give with food. When I forget they don't complain anymore, maybe they got used to it? Also, I wouldn't give with probiotics b/c the OLE will kill them possibly. And another thing, maybe you should start with a lower dose and then increase b/c there is always the possibility of yeast/viral die-off which can be unpleasant (but I am of the mind set of "lets just get this over with" ).

Can't help but to wonder how these studies would be viewed in light of the issue which is before the Supreme Court for review. http://www.dailyfinance.com/story/company-news/before-the-high-court-can-drug-companies-be-sued-over-vaccine-d/19675533/ Before the High Court: Can Drug Companies Be Sued Over Vaccine Designs? This blows me away, researchers say there is a potential need for further studies? I'm sorry, but hasn't mercury already been studied and found to be TOXIC!!! Call me crazy, but sounds like a no-brainer, dear researchers

zith used to be ds5's "magic elixer" in terms of pandas...until, that is, he developed bacteria (klebsiella, which was worse than pandas - RAGES and psychotic behavior). Same with DS2, he developed clostridia. He reacts with aggression and noncompliance (oh so fun ). Yeast, for us, is more of a drunken, silly, hyperactive, not focused behavior. Very distinct once you experience it and know what it is. Anyway, the die-off is basically a worsening of behavior when you first start treating these things. BTW, both of my boys had thrush as babies, too. To me that means that they are probably prone to it, or maybe they never really even fully got rid of it in the first place. I would be careful and increase probiotics. I hope this post did not scare you, not all kids react this way when they do get these infections. But I will say that once it sets in it is very hard to get rid of, especially for our kids on chronic abx...

I witnessed this recently, too. DS5 actually experienced HALLUCINATIONS on the day that DS2 went into severe exacerbation and next day positive for strep. I didn't fool around, I put both on abx and I started one myself b/c I had a sore throat...

The sad thing is that they say "it isn't a problem" about a lot of things which in my opinion LEADS to autism, then they say it again when they have autism. Broken system, sad system, cheap system, I must stop myself here!!!!!!!!!!! Anyway, my 5yo pandas son had neither. My 2yo pandas son had both, but we were advised that it was not bad enough to do the helmet. I kind of regret that now b/c although he is the cutest little thing, some people notice the dysmorphic shape of his face (I notice it but DH does not). I was told that possibly the torticollis was due to low muscle tone. Also, I may have been fortunate that he had reflux and was only able to sleep in the swing - the rounded shape of the bedding may have assisted in his flat spot going away. He also has Chiari Malformation and sometimes I think it is all related. I am definitley seeing a correlation btwn chiari and pandas flares. chiari only bothers him when pandas bothers him. all tied to inflammation I guess. Of course the neurologist says, no way those are tied together, to which I should have replied "oh, you know that b/c of all the chiari/pandas patients you have studied??"

I don't comment on many of these vaccine posts, simply b/c once I get going, there's no stopping me. But I have to say that the DTaP vaccine is the one that brought down my now 2.5 year old (he got it at 4 months), and I know this b/c I was separating his shots. He had a severe 30 min. screaming attack that afternoon, it was definitley a pain cry and NOTHING would soothe him, not even nursing. He went on to lose all of his babbling after that, absolutely no sound came out of his mouth for months, except when he cried or we tickled him. His head became enlarged, his belly became bloated and for the first time he had bowel problems. His hypotonia progressed to the point that he couldn't even lift his head, chronic infections and eczema...it was a nightmare. It has taken all of 2 years to get these things back through therapy and the DAN protocol, but I don't know if his immune system will ever be the same now due to pandas, etc. I am one of the lucky ones who had an older child and knew what to look for. I finally realized after his 6 month vaccines what was happening, but had he been my first I wouldn't have known that these things were not normal... Boy do I have to use some self-control to stop here...

I'm sorry if I am posting this twice, can't remember if and where I posted this recently. Here is a link to a great flu-prevention protocol, also a flu protocol (meaning if you suspect that they actually have the flu, do the flu protocol ASAP). I printed it out and taped it to the inside of my supplement cabinet. I use if for cold viruses sometimes too. There is also some info on the mist vs. the shot on here... http://www.wholisticpeds.com/default.asp?cid=956655663&n1=1&n2=39

I hear this all the time, but I did a search yesterday and found a post from someone who claimed that it was a rumor going around that you can't take antibiotics with it b/c it will reduce the efficacy of the abx. She said the rumor was started b/c some abx are made from a fungus base - ie penicillin and such. So the theory is that if the OLE kills that fungus then it inactivates the abx. This person claimed that penicillin is no longer attached and dependant on the original fungus so this is impossible. If anyone else has a better explanation, I would love to hear it b/c at this very moment I started my 5yo on vancomycin to kill the gut bacteria and I am keeping him on his full dose of OLE. Personally I do think the vanco is still doing it's job b/c we had some KILLER, and I mean KILLER die-off yesterday 30 minutes after his first dose. 45 minute rage... I am using New Beginnings... We used to have the same success with azith - I always called it the miracle elixer! But then gut bacteria moved in and azith became our nemesis! That is a great idea about using it every other day, I even wonder if you could divide the dose into every 3rd day and so on (meaning increase the dose, but decrease the frequency). In fact, before we got our little azith resistant case of strep in Sept that was our goal, to increase the dose and decrease the frequency so that the kids had a chance to overcome the yeast/bacteria in between. Our DAN doctor even suggested giving 1000mg, once a week to my 50 lb 5yo!! I had never heard that recommendation before and actually, theoretically it sounds brilliant. But we never got that far. In the meantime, I am not completely dismissing the idea of ever going back and giving that plan a trial b/c what the heck, how much easier would it be to give abx once a week rather than 3 times a day (which means giving 2 doses of probiotics separate from that = supps to both boys 5 times a day!!!!). Still concerned about azith resistent strep, though. Becoming a real problem down here in florida. Hi, I don't see Seagate, perhaps it does not have enough oleropein content. I would go with Thorne, they have very high quality stuff and plenty of oleropein. I just ordered some cheap at healthdesigns.com, going to try it on my four year old see if I see any improved behavior. Someone said no OLE while on antibiotics, I believe. Michael Like I said above, if you know why please let me know!! BTW, I did ask our DAN doctor about this and he was not concerned about the use of OLE with abx. We are doing it right now and maybe I will have to come back and report after a few weeks if the abx kicked the gut bacteria in the *$$ afterall!

Olive Leaf Extract http://www.ourkidsasd.com/products/?s=olive+leaf By the way, I am convinced that OLE is doing more than just killing strep. I do know that it is also antiinflammatory and also antioxidant and immune booster, antiviral, antiparasitic, etc. I am starting to wonder if maybe it is doing more than just killing strep, otherwise why would my 5yo go backwards in such a short amount of time when I reduced the dose. I actually just did a google search on lyme and OLE, came across some interesting info. Makes me wonder, especially with my 2yo...did it kill some other thing he had going on? latent virus, lyme?

I hear that you need to add rifampin to the abx to break the carrier state...

How dare you go and have a life... You know me, I'm not going anywhere! I'm just not going to continue to give my weekly updates b/c I know for the people who don't believe in holistic approaches or the ones who think it can't possibly be that simple, it can get annoying (I know b/c I was there about a year ago, myself). If we start to slip or anything changes I will let you all know... I'll let you know if there are any changes. BTW, you know if we get on top of yeast and bacteria I will be shouting that from the rooftops, too! I might even be - dare I say - bored!

So, those who have followed our scary journey off of abx know our story by now. Here is the latest: DS2: Doing SOOOOOOO good! This child is knocking my socks off! And keep in mind we made the switch TWO WEEKS after active, confirmed strep infection! The week I switched from abx his OCD improved, but more surprisingly, his lagging speech TOOK OFF!!!! The speech therapist has been amazed with his progress (and she does not give out praise very easily ) So I don't know if the progress has been b/c the abx has been holding him back, or the OLE is just what his little body needed to get rid of the last of the inflammation (and strep and viruses and whatever else has been lurking). But here we are and he is just getting better and better each week! It is hard to put into words, it's more than just speech, it's like the last of his autism has been lifted, whatever was left that held him back from being FULLY present and interactive with us. I keep thinking it's like he is finally a fully developed human for the first time...I know that sounds weird, but I guess what I am trying to say is that this child finally seems "normal" to me in every sense of the word. Oh, he is still battling yeast but that is under control doing a yeast rotation (biocidin, oil of oregano and grapefruit seed extract). Also, his impetigo is still under control with herbs, topical GSE and also Calendula Cream (also a miracle in and of itself, this has been a 10 month battle that we just weren't winning with standard abx). DS5: Also doing fabulous in terms of pandas. In fact, i did a little test this past week to see if he could get by with a lower dose (was taking 500 three times a day, I backed down to 500 twice a day). Within 24-36 hours I was having to "rescue" him with ibuprofen (having mood swings, depression, a "poking me in the face" tic/compulsion). I continued for 3 days to see if it was just coincidence. Could not go without ibup for 3 days so decided to increase to original OLE dose and the mood swings and tics were gone. So, at least i know for sure he is on the minimum dose that is effective for him. He is, however, still battling yeast/bacteri. Everytime I treat yeast, bacteria pops up. Every time I treat bacteria, yeast pops up. I have been controlling the bacteria with Biocidin, and like the OLE I have tried TWICE to go without it and he absolutely cannot function without it (gut bacteria can be very nasty for some kids). So now he needs to be on OLE, Biocidin and also a yeast rotation (similar to my 2 yo). I am talking to the DAN doctor on Wed to see how we can get off the biocidin. Maybe I need to give in and do a round of vanco/diflucan to get on top of this problem (or maybe I just need to stop DCing the biocidin for a good month and then see where we are). I plan to do a stool analysis in the next week to see what the heck we are dealing with and go from there. Either way I am so darn happy the OLE is working out for us. I am also so much more relaxed about taking my kids places. I just feel so confident about OLE's abillity to prevent strep (where with azith, people were dropping like flies down here in florida with strep, including both of mine). I have my whole family taking OLE, by the way... This is my last update b/c I don't want to keep boring everyone with it, but I do think that one month is a pretty good indication that it is working for us. Maybe I will give a quick update after Feb to let everyone know whether or not we made it through another high strep time (DS5 gets it EVERY Jan/Feb.). To me that will be the real test....

fixit will probably chime in here soon, but I think she did clindamycin with good success.

What you are describing on the playground (singing the places he had been to) sounds a little like either echolalia or scripting. My son does this from time to time. I think I have pinned it down as a yeast or bacteria of the gut. But it can be purley pandas in some kids, too. Like you, when my 5yo does these kinds of things I think about getting another psych eval to see if we have moved into the spectrum, but then I think, what's the point? I have his issues pinned down to 3 things primarily: strep, yeast, bacteria. When and if I ever learn to balance and manage all that, there will be very little behaviors left that look like autism. That's where a good DAN doctor comes in...

I don't know much But I can tell you that many report just an overall worsening of behavior and also some rashes that come and go on all different parts of the body. You can go to the yahoo group called MB12Valtrex - they discuss viruses a lot in terms of autism. Many use valtrex but some use OLE.

Stephanie - Where do you get Sambucus and how do you dose it? I'm really interested in any homeopathic options. You can get it at Whole Foods, but much cheaper at iherb.com (use this code at checkout for $5 off: EWE899, and if you spend over $40 you get free shipping). I can't exactly remember the dose, but here is a great link to a doc's website, he has a great flu-prevention protocol that includes sambucus and oscicillicom (sp?) that smartyjones was suggesting: http://www.wholisticpeds.com/default.asp?cid=956655663&n1=1&n2=39 By the way, homeopathy is different than a general "holistic" approach. Homeopathy is much more complex and I have not done much of it b/c of that (except things like Calendula Cream and teething tablets). I think you really need a homeopathic practitioner to guide you with that...

ok...so..if its viral..could that die off cause congestion...like they say lyme die off might make you congested... ds started ole right after clinda.... we got up to 1000mg 3x a day and the next day he looked like his allergies in the spring... i'm thinking...omg...his fall allergies are now as bad as his spring allergies.. went to docs on wednes..to make sure it wasn't a sinus infec..as he had ta 4 weeks ago tomorrow.... ole was started about 9 days ago...his vocals this week are terrible(i think teacher is getting annoyed)...no motors(knock,knock) but if you know tics...a reverese sensation can trigger the tic... ie..if you have arm tic and you were a tight shirt...your arm tics more... sooo....ds is so congested...when we do pulse with water solution(not netti..it's electronic pulser)...snot just pours out.... he's coughing, hacking, suckking snot..clearing..some grunts like to shoot it out..suck...(i'm trying to say his drainage is triggering these huge vocals...90% of them sound like a cold on over drive) COULD THIS BE HERXING??????? this could last a month??!!!!!??????!!!!!(assuming its the ole kicking some virus BUM and not allergies) If I remember right, yes both kids had some congestion/sneezing/cold symptoms with the start of OLE, but could be coincidence. Definitley crossed my mind that it could be herxing. But they did not have an increase of tics, only an immediate decrease (within 3 days all pandas symptoms gone). I think you need to pray about this one, fixit. Or go with your mommy instinct. I know how much you hate the vocals (ditto) so you have to either see it through for a month or say NO WAY! Maybe wait at least until the congestion is gone...??! I have to give Jenny the credit for leading me to the DAN protocol - it has been a life-saver in our house. Although, our DAN doc admittedly says that PANDAS is their hardest thing to manage. Get this - DS2's autism symptoms were GONE within a month of the protocol. PANDAS? That little pest will stay with us for a long time... some may disagree, but for us autism has been a walk in the park compared to pandas...

Wow, your plate is very full! You will get relief when you get on the correct meds. For many of us it is a long journey to finding 100% resolution, but boy do you need some quick relief, even if only 50% improvement! Stay strong. The medical community has a way of being ignorant and condescending at the same time (a maddening combination for us moms). These people will only bring you down and drain you of the little energy you have to fight this disorder. Find a good doctor who is 100% in your corner and who is well-versed and accessible. You can't afford to sit around waiting for abx when they are needed YESTERDAY! Best of luck and keep us informed!

I do not see Dr. Murphy b/c I did not want to get locked into her study meds and also we have a lot of yeast/gut bacteria issues that she does not do. We see Dr. Rossignol in Melbourne, FL (www.icdrc.org). I don't know what she recommends but here is a partial list of what our doc has recommended (my kids are on 25 supps a day each, they also have had ASD...): Very high dose fish oil (DS5 is on 2000mg EPA and 500mg DHA, twice a day!! DS2 is on a little less) Taurine (500mg, twice a day) Magnesium Glycinate (has to be "glycinate", 200 to 400 mg per day) Spironolactone (immune modulatory and anti-inflammatory - requires RX tho) LDN (immune modulatory and anti-inflammotory - also requires RX) GFCF diet I added the OLE myself (oleuropeins are the "active ingredient", make sure the product specifically states that it is standardized to 20%). OLE has done wonders for strep. I have to say that DS5 is a very big ticcer but he also has all the other symptoms, the tics being the hardest to get rid of. Just wanted you to know that b/c you were specifically asking about the ticcers. DS2 is more of an OCD kid, but does have tics from time to time.

So many things could have been happening. My first thought was die-off, but usually that happens the first day! Then I was thinking that it created yeast pretty quickly. Another thing is maybe it was FIGHTING yeast and making room for bacteria which cropped up within the next couple days? Also, many ppl use it as an antiviral to reduce the level of latent viruses that are lying dormant in the body but are wreaking havoc on the child. I hear that the viral die-off symptoms last about a month. A lot of thoughts...hope something helps! Oh, yes OLE does fight yeast but I hear from so many ppl that it actually creates yeast when used long term b/c as the viruses are shedding, yeast is being released (or something like that, I don't quite understand it actually ). Also, I have to wonder if it is killing so much bacteria that it is making room for yeast to grow. Our DAN doc described the gut like a hotel. When you clear the hotel rooms of one thing (whether it be good bacteria, bad bacteria or yeast) then you make room for other things to move into the rooms. Does that make sense? So, ideally you want to fill as many "rooms" with good bacteria so the other stuff can hit the road! Or like Mati's mom said you can put the kid on the SCD diet and "starve" the little creeps so that they leave the hotel and go down the street to Denny's (the little creeps being the microbes, not the kids LOL...or MAYBE I DID mean the kids!) Oh, mati's mom, you are like my conscience, always making me face that which I am avoiding Lyme, SCD, what else do you have for me!!? LOL! J/K...I have so many people pushing me to the darn SCD diet but I am so burned out on the darn diet stuff! It would probably change our lives, though. I totally believe in it. Keep on planting the seeds, I will eventually get around to cultivating...