Stephanie2

I agree that it is a gamble either way, but the way I look at it is if you vaccinate you are putting yourself on the line for sure, where if you don't then maybe you dont' even have to deal with any setbacks at all. I do know this, there is still mercury in the flu shot, if a doc tries to tell you that there is not, ask him for the package insert and ask him to show you there is not. Also, there are many other ways to get thru flu season. Many people mainstream or not, will tell you that optimizing your vit d levels will make more of a difference than even the vaccine (the vaccine does not guarantee immunity). Our kids had their levels tested and they were low and now they both take 2000 iu per day of vit. d. Also, our DAN doctor recommended a supplement called Sambucus (elderberry) during flu season for it's potent antiviral properties. There are SO MANY ways to prepare the immune system. I guess you know from my other post/article link what I am going to do (or not going to do).

OK, at least I am not the only one paranoid about the "oops" vaccination!! LOL! I emailed the teacher to ask her to "make sure" he does not mistakenly get vaccinated, and I also pulled the nurse aside the last time I was there. Of course her take on it was that there is NO WAY my son will get the flu from the other kids after the vaccine. I just smiled and nodded my head (gag). BTW, I LOVE the quote under your signature. Could that be any truer than a mom fighting for her child?? I swear I was born with an extra strong mother-bear instinct (as many of us on this board). I copied and pasted it into my facebook page I agree it is sickening. I mean, what next?? Don't forget that they are giving the flumist at walmart too. Can you imagine? I mean if I were part of the masses, this would be my thinking: ok, i will go get my flumist, then I will do my shopping b/c if I do it the other way around my food will get cold and/or I will have to stand around in line with my shopping cart. So if most ppl think like me, they will get the shot, rub their noses a few times, put their hands all over the shopping cart and merchandise (even the food - gasp - the produce!). You can bet my kids will only be entering walmart over my dead body this season...

Try some Olive Leaf Extract, took care of the last of the tics for us: 500mg, 3 times a day (standardized to 20% oleuropeins).

Something about this is making me think of gut bacteria, caused by the chronic abx use. My boys get more aggressive with clostridia and other but bacteria than they do with pandas (in fact, my 5yo ONLY gets aggressive with gut bacteria). Also causes OCD... We need to talk!

No worries about sharing the potential downside of writing such a letter. You are kind and generous to share your experience with me and the group. I have 2 kids w PANDAS in 2 different schools. My instincts tell me that this kind of letter would never fly in my daughter's school. Instead we've met 1:1 with her teachers w. the nurse and principal and asked them to actively enforce the school's sick/home policy by phoning parents and sending sick kids home until they produce strep test note from a doctor. The nurse was thrilled to have a me come and prompt it because especially as the kids get in to later elementary years the parents don't report strep to her, they just send them to school sick or never have them checked out in the first place. How much did I know about Strep before we met PANDAS. Very little. So strep reporting is up in that school but only because of the newly revived practice of sending the kids home. My son is an an 8:1:2 program and he is not in our home district so the dynamic is very different, his social world outside of school is closer to home. The teacher so supportive, for the sake of the kids she teaches, because it gives her leverage to get the parents to send the kids for a test. I guess I should hope for the best but brace myself for a little back biting. Thank you for your reply. You do not have to state in the letter who the "child" is who reacts severly to strep, or HOW the child reacts (doesn't have to state that a child in the class has pandas).

Thank you so much! I have not tried Candida Clear. Although I use NOW brand, it seems to be so "generic and cheap" looking so I didn't think much of it. I will have to rethink that if you say it works. I suspect your son swallows the pill, do you have any suggestions on how to get this dowm my 2 and 5 year olds? I usually have no problem "bullying" them (j/k) into taking their supps, but with caprylic acid it is all out WAR!! I have completely given up on it. Not to mention I tasted it and it is intolerable. Also, the candidase enzyme, is that similar to No Phenol? I already give that 3 times a day along with the OLE. I also get great success with GSE for yeast but like you I try to back off so that the yeast doesn't start resisting it... How long has your child been on OLE? Is it doing it's job in terms of pandas?

The more I think about it the more I think I need to keep my son home from school for at least a week, starting on the day the kids will be given the vaccine (in Dec.). I have read that people can "shed" the virus for up to 21 days. I can just imagine these kids going to the nurse, getting their nasal spray and then going back to class and wiping their noses over and over and then touching everything in sight. I can't see how my unvaccinated child will be able to avoid getting the flu! And to make matters worse, I hear that the live virus is a mutated virus that is more dangerous than getting the flu itself! Anyone have any info on that? What to do? Am I being way too overprotective?

Check out this article. It is written in relation to the elderly but talks about how the immune system is overactivated for 1-2 years for each vaccine...yikes http://articles.mercola.com/sites/articles/pages/vaccines-depression-and-neurodegeneration-after-age-50.aspx

I've been posting our weekly progress on the forum. OLE is still working wonders here for strep/pandas. So much so that DH and I are scared to reduce his dose, but I'm afraid I may have to do just that. Are there any others here who are doing this naturally and have some input? There are many on the autism boards, but there are SO MANY members there who are discussing so many issues, that it is hard to get a good pandas discussion going, it just gets lost in the mix many times. If some of us could identify ourselves here it would be so great to share ideas and experiences... Anyway, the problem is that we are still really battling yeast. And when I treat the yeast, it makes room for clostridia to move in and clostridia makes my boys aggressive (almost worse than pandas) and psychotic-like! Then when I treat clostridia, yeast moves in. It's like I can't win! In the not so distant past I was managing these things with diflucan and vancomycin, but just like I have sworn off the high dose abx for strep, I am now swearing off all the rest b/c it is just a vicious cycle with no end! So I am successfully treating clostridia with Advanced Biocidin, Sac. Boulardii (like Florastor) and Culturelle. However, like I said then we get yeast. So DH and I decided last night that we are going to cut out one of his OLE doses, keep him on biocidin for an undetermined amount of time, and also use other herbs for yeast. I'm not quite sure why biocidin is not keeping the yeast at bay. The only thing i can come up with is that it is killing so much clostridia that yeast has more room to thrive. So here is what we plan to do, any input? Probiotics (400 billion) when he wakes up OLE/Biocidin 1.5 hours later OLE/Biocidin after school Biocidin at dinner Probiotics (400 bill) before bed Not quite sure yet what I am going to add for yeast, probably one of the following: Grapefruit seed extract, oil of oregano, ??? Just seems like a lot, part of me wants to drop OLE all together b/c biocidin "should" cover him for strep AND clostridia, and then I could rotate OLE, GSE and Oil of Oregano for yeast. When I brought that up to DH he was too scared to drop the OLE...can't blame him.

I have looked into the same scholarship money for private school. Are you aware, though, that you have to send him to a special needs private school that is approved by the state? Just making sure you know that. I wonder if he would need that level of accomodation. I have a 504 set up for my oldest (DS5 - kindergarten) and the only accommodations we have in place are "extra time" b/c his OCD makes him "hyper-focused" on his worksheets - like he can't finish and move on b/c it is never good enough. That is about it, b/c he has surprised all of us and has been managing pretty well. I may, however, have to later add that the tics are to be ignored. His kindergarten teacher is really accomodating, but she tries to make him stop his "noises" from time to time. So far it is not a real problem at all b/c he rarely tics in the classroom, but I don't want him to get in trouble...

if you follow the link that pathfinder posted you will see my previous post. very good success with LDN for pandas with my boys.

When my son's school found out that he had pandas, the guidance counselor went right to the principal and asked if they could send a letter home for his classmates. Basically it said that if your child is ever diagnosed with strep, please inform the school nurse so that I, the parent, could decide if I need to keep him home or not. It stated that the information they give the school nurse will be confidential. It stated that he has a "severe reaction" to strep. That's about it. I don't have it on file to forward to you. The principal signed it. I was really surprised about how serious they were taking this! Hope that helps.

I get asked this a lot, I am going to cut and paste my usual response: Anyway, you may want to join some autism message boards on yahoo, specifically ones where the moms do the DAN protocol, or similar treatments. I have learned so much about treating yeast, bacteria, etc. Here are a few groups I recommend: MB12Valtrex, ABMD, beyondgfcf. Here is what many ppl do to control yeast. They rotate 3 antifungal products on a 4 day rotation and then start over again. So each product is used for 4 days then switched to the next product and so forth. Here are some products that ppl use and the brands I recommend (if I have used it): Oil of Oregano (Oreganol) Olive Leaf Extract (New Beginnings, Thorne, Solaray - make sure it is standardized to 20%) Advanced Biocidin (herbal blend you get online) Caprylic Acid Pau D'arco (Gaia, Brainchild nutritionals) Oregon Grape Root (Thorne) Grapefruit Seed Extract (not grapeSEED extract; Nutribiotic) In trying to decide which ones to use, you also may want to take into consideration what else you may want to fight. For example, Dr. R says that many of these kids (on this forum) are suffering from clostridia due to all the ghigh dose abx and that the clostridia looks very much like pandas and therefore everyone thinks that they can't get rid of strep, while really the strep is gone but now the kids have clostridia which you can't really get rid of without a specific abx such as vancomycin or flagyl (or some of the above herbs). Also, you may want your antifungal to give your kid an extra boost in terms of strep (in case they come up against an azith resistant strain, etc... So if you also want to target clostridia or strep (both bacteria) you would want to use herbs that also have antibacterial properties. Those would be all of the above, EXCEPT caprylic acid, pau d'arco and oregon grape root. So here is what I am going to be doing. Since I am using OLE for strep and clostridia prevention, I have bacteria covered. So I am going to be using the following for yeast: pau d'arco, oregon grape and ???? haven't decided on the third yet. OLE actually treats yeast but if used long term the yeast will adapt to it and then OLE will actually CREATE yeast. So if used only in a rotation, you are good, but if used all the time you have to use others to control yeast. As far as dosages, it is so hard and individual! It's not an exact science...I use a combination of other's experience, the label (cut the adult dose in half) and my own mother's instinct. Why don't you decide which ones you want to use and then I can give you some guidance on the dose, otherwise I could write a book on dosage of the above herbs!! Plus, some are less tolerable etc. I will say this, I purposely exclude caprylic acid (which stinks b/c it is the best one on the list) b/c the taste is so unbelievably bad that I just can't get either kid to swallow it, which is very rare. Oh, you should know that grapefruit seed extract is VERY potent for yeast, however, it can elevate liver enzymes (you may have heard that grapefruit juice can interfere with various meds, etc...). My 2yo had very mildly elevated LFT after using GSE, so now I use milk thistle to help the liver and I limit the use of GSE (and I have the LFT's redone every few months). His LFT's came back down to the normal range. Thanks for letting me know! I just cleared it out!

So, here is where we stand: Myself: I was battling a sore throat ever since DS2 tested positive for strep in early sept. after trying HD amox, and then OLE, I went on to treat it with a high dose of grapefruit seed extract, 3x a day and my sore throat is finally gone! I am going to continue with it for a couple more weeks just in case. BTW, for the first few days I gargled with diluted GSE to really get to the tonsils. DS5: As far as pandas is concerned he is still doing fabulous! We had a few setbacks this week, however. Earlier in the week, yeast flared big time so I upped the herbs I am using for yeast and he was better after a couple days. Then it seemed like there was some kind of viral thing going around in our house with both kids and myself. Very mild cold symptoms all around, and some mild upswing of pandas symptoms for both kids (but enough to make my heart stop, you know the feeling!!). Luckily for each child the pandas symptoms went away within 48 hours, with a little help from some ibuprofen in the meantime. DS2: Some major victories in his corner!! His impetigo flared a couple weeks ago. I avoided my usual knee-jerk reaction to get the doc on the phone and get some augmentin on board to stop the agony (of the pandas symptoms that usually go with it). I did lots of research one night and went to whole foods the next day. Here is how I got rid of it: about 10 drops of tea tree oil in his baths, mixed grapefruit seed extract with water and put in a spray bottle - sprayed his whole body about 4 times a day, after that dried I put Calendula Cream on his whole body. There were a couple stubborn lesions under his eyes that I also put a little Altabax oinment on as well. The eyes healed, believe it or not, when we took him to the beach last weekend (salt water). I was so ecstatic to be able to do this without the usual augmentin. Unfortunately, when his skin healed I backed off my protocol and now his eyes are starting to get red/infected again, so I am picking up the pace once again. Since this has been going on since Jan, I am thinking that maybe he is a very susceptible kid and I may have to treat him long term to keep it away. All in all I am still happy with my decision and still think they are doing better than they were on HD abx...

Fixit from skimming your post it seems like you need some major anti-inflammatory action. Enhansa (curcumin) may take a while to kick in. LDN? Spiro? IVIG? Have you tried giving a big dose of ibuprofen? I'm curious to see if you notice a difference. Do you see a difference after clay or charcoal? What did the OAT test show? I can't remember... See my post about our 3week update on OLE. We had some very loud screeches show up after I stopped biocidin. I added it back in and as of this morning they are gone. Does that mean there is some bacteria? Biocidin is really good at getting rid of clostridia. I don't know...I am tweaking things as I go along, I certainly don't have all the answers and I am waiting for some OAT results. Is there any way you are seeing yeast from OLE? Any die-off of some sort? So many variables.

All I can say is that we had one of our worst pandas exacerbations within 2 weeks of the polio vaccine for my (then) 4 year old. That was the last shot that either of my children ever received. Also, I happened to look up the ingredients and the polio vaccine contains strep...?

Well that explains why my 2 year old hates it! We used it before and after his recent surgery to help tolerate the gen anes. I never thought to smell it...

Silvia, what are your thoughts on Glutathione in the nebulizer? Do you think it is worth it? I have some on hand and thought about doing it the next time we have an exacerbation...

Well, they both work well against strep. I often wonder why many people prefer olive leaf over oil of oregano. I am assuming b/c olive leaf doesnt' affect good bacteria as much, and also I think it is considered less toxic when used long term. they both fight yeast and viruses and bacteria, etc. - even parasites. I am getting tremendous success with olive leaf in both of my boys in terms of pandas. still having a yeast problem, though.

Yes, it is also an antibiotic (plus antifungal, antiviral, antiparasitic - good one to have around). Hope it works! You may want to gargle with it before swallowing it if you have a sore throat (diluted, of course!)

Yes I am taking the same brand. I have heard that you should not do both OLE and abx b/c the OLE reduces the efficacy of abx (don't know why). The GSE product I use is Nutribiotics, you can get online or at whole foods, etc. I have not heard of problems with ivig and herbs but who knows?? Maybe you should google it! Well, from what I hear, as the OLE kills VIRUSES, for some reason yeast sets in (these would be latent viruses that many of us carry around, but may be affecting our kids). Also, maybe fixit is right that maybe it kills good bacteria so the yeast eventually moves in. I do know that if herbs are not rotated, then their ability to fight off YEAST diminishes. I will say that my kids are continuing to have yeast issues. I stopped the GSE the other day to rotate to Pau D'arco and BAM both kids got yeast right away. So I am going to stick with the big guns like oil of oregano and GSE and biocidin to kill yeast... I have read that it is safe to take long term. All the bottles have different recommendations as far as dosage. I don't know about it burning your mouth. I open the capsules and put it in juice for my kids, they don't complain about it burning. Are you sure you bought OLE and not oil of oregano?? OoO burns the mouth (not literally, just burning sensation)

DS5 gets leg cramps from the following: magnesium deficiency strep too much 5HTP I think fixit said that augmentin caused leg pain when her son developed yeast while on it. Is that a possibility? Maybe she will post...

I have been asked about this a lot lately, I am going to cut and paste my response here: Anyway, you may want to join some autism message boards on yahoo, specifically ones where the moms do the DAN protocol, or similar treatments. I have learned so much about treating yeast, bacteria, etc. Here are a few groups I recommend: MB12Valtrex, ABMD, beyondgfcf. Here is what many ppl do to control yeast. They rotate 3 antifungal products on a 4 day rotation and then start over again. So each product is used for 4 days then switched to the next product and so forth. Here are some products that ppl use and the brands I recommend (if I have used it): Oil of Oregano (Oreganol) Olive Leaf Extract (New Beginnings, Thorne, Solaray - make sure it is standardized to 20%) Advanced Biocidin (herbal blend you get online) Caprylic Acid Pau D'arco (Gaia, Brainchild nutritionals) Oregon Grape Root (Thorne) Grapefruit Seed Extract (not grapeSEED extract; Nutribiotic) In trying to decide which ones to use, you also may want to take into consideration what else you may want to fight. For example, Dr. R says that many of these kids (on this forum) are suffering from clostridia due to all the ghigh dose abx and that the clostridia looks very much like pandas and therefore everyone thinks that they can't get rid of strep, while really the strep is gone but now the kids have clostridia which you can't really get rid of without a specific abx such as vancomycin or flagyl (or some of the above herbs). Also, you may want your antifungal to give your kid an extra boost in terms of strep (in case they come up against an azith resistant strain, etc... So if you also want to target clostridia or strep (both bacteria) you would want to use herbs that also have antibacterial properties. Those would be all of the above, EXCEPT caprylic acid, pau d'arco and oregon grape root. So here is what I am going to be doing. Since I am using OLE for strep and clostridia prevention, I have bacteria covered. So I am going to be using the following for yeast: pau d'arco, oregon grape and ???? haven't decided on the third yet. OLE actually treats yeast but if used long term the yeast will adapt to it and then OLE will actually CREATE yeast. So if used only in a rotation, you are good, but if used all the time you have to use others to control yeast. As far as dosages, it is so hard and individual! It's not an exact science...I use a combination of other's experience, the label (cut the adult dose in half) and my own mother's instinct. Why don't you decide which ones you want to use and then I can give you some guidance on the dose, otherwise I could write a book on dosage of the above herbs!! Plus, some are less tolerable etc. I will say this, I purposely exclude caprylic acid (which stinks b/c it is the best one on the list) b/c the taste is so unbelievably bad that I just can't get either kid to swallow it, which is very rare. Oh, you should know that grapefruit seed extract is VERY potent for yeast, however, it can elevate liver enzymes (you may have heard that grapefruit juice can interfere with various meds, etc...). My 2yo had very mildly elevated LFT after using GSE, so now I use milk thistle to help the liver and I limit the use of GSE (and I have the LFT's redone every few months). His LFT's came back down to the normal range. Here is where I buy most of this stuff: www.ourkidsasd.com and www.iherb.com (free shipping for both above $40 orders - at the first website you have to enter: free at checkout, and at iherb you can enter my personal email address for a $5 discount: stephanieweeks@ymail.com). Hope this helps!!

So it has been 2 weeks now since I stopped abx for my kids and started olive leaf extract. Here is how it is going: DS5: PANDAS symptoms are better now than they were on abx (he was on augmentin when we stopped). We had a couple days earlier this week where I would say he was at 100%, which was awesome! Then yesterday for about 24 hours he went a little backwards (but he was a bit congested, sneezed a couple times, did not sleep well the night before). Today he was back in the game. He even had a dental cleaning today, lots of blood, I thought for sure he was going to go backwards. I gave OLE right before and after appt. Only complaint I have about DS5 is that we have had some social regression lately, but that started long before OLE, back when he was on augmentin and azith. I was hoping OLE would pull him out, but it appears that it may not be due to pandas which quite frankly has me a little scared with all the talk about augmentin being linked to autism. I'm going to be talking to our DAN doc soon about this. Or maybe it is related to pandas and it is a lingering symptom that we need steroids for. We will see. DS2: I would say that DS2 is either right where he was when we stopped abx or maybe a little better. He was/is at about 90%. I think the one thing holding him back is a recent flare of impetigo. His eczema flared really bad (ironically) when he was put on augmentin several weeks ago due to pos strep throat. I could not use his steroid cream b/c he had hernia surgery coming up. So the eczema flared like CRAZY and impetigo set in. This brought some mild/moderate pandas symptoms. So I had a choice to make - jump ship from OLE and go to augmentin (thereby perpetuating the vicious cycle of augmentin creating worse eczema, impetigo, more augmentin, etc. we have been in this cycle since JANUARY!!!). I decided to give it everything I had, herbally speaking. Kept him on the OLE, added in some Grapefruit Seed Extract, both orally and topically, put tea tree oil in the bath, and slathered him with Calendula Ointment 3-4 times a day. I was nothing but an impetigo-fighting machine for about 5 days straight!!! Luckily, his impetigo went from being all over his arms, legs, butt and face, to just 2 small spots, one on face and one on his butt. I can't believe I was able to do this without abx, steroids, topical abx, bleach, the usual that just never really works. I have also seen his pandas symptoms reduce as his sores greatly reduced. Right now he is back to being 90% (just some lingering OCD that I can divert his attention from relatively easily). I am hoping that as I get on top of those 2 small sores he will get to 100%. I also wanted to add that last week we were dealing with a good amount of yeast. I added grapefruit seed extract for both kids and after some die-off (that was so not fun) yeast is gone for now. I think I am going to rotate the following for yeast (pau d'arco, oregon grape root and biocidin). So there you have it. I am thoroughly happy with my decision so far. I realize that the efficacy of the OLE will not be truly tested until we can get through another strep season (DS5 ALWAYS gets in late Jan./early Feb.), but I do think it has been tested a little since we have had strep in the house lately and b/c they are both holding steady with impetigo in the house. I will be back in another week with my 3 week update! Oh, I forgot to mention. As of Sunday, I too, went off abx (I had an active strep infection that was not going away with the use of 800 mg of amox twice a day). I started with GSE 3 times a day and my sore throat went away. Then I switched to OLE today just to get on the same page as my kids...however, I am taking double their dose (1000mg, 3 times a day).

Both of my boys used to be that way...constant colds that would turn into secondary infections, either ear, chest, sinus or all of the above. also used to react with asthma. getting sick used to be a constant nightmare in this house, no sleep, constant nebulizer, abx, steroids. Here is what we were advised by the DAN and it all turned around within a few weeks... Vit D3 (tested low, should be around 50) Vit C (buffered, high dose 1500 mg for ds2, 2000mg for ds5) gluten and dairy free diet (I think it is the dairy free that helped the most - I did the same and was able to go off all my allergy and asthma meds!!) Methyl B12 shots (this was prescribed for other reasons but I feel has contributed to immune boost) Zinc (tested low) High potency Multi Out of all that I honestly think it was stopping dairy that did it. To this day, when I eat dairy products for a couple days in a row, I start wheezing and feeling like I need to use my inhaler. Otherwise I try to keep dairy to 2 servings a week for myself (none for the kids). DS5 was able to go off singulair and zyrtec, nebulizer, steroids, chronic abx when he stopped dairy. DS2 never even started dairy (but was sick a lot when I was nursing and eating dairy). Now a days when they get sick it is like a blip on the radar...a little congestion at bedtime, a couple sneezes here and there. Not even a runny nose usually! And as far as pandas symptoms, most times I don't see an increase, if I do it's for a couple hours or so.