Stephanie2

Don't be concerned about B vitamins...these are water soluble, whatever the body does not use will come out in the pee (hence the bright yellow pee). Even at 3000% RDA, no concern (plus, keep in mind that RDA's are set to keep a person from becoming completely deficient in the nutrient, not to guide the person to optimal or therapeutic dosages, which are usually much greater than the RDA). Also, Swim, some supplements can be "stimulating" (including calcium). As far as magnesium, I have been advised by our DAN doctor that as far as tics and hyperactivity goes, mag glycinate is the most "calming".

Listen, DS2 is at his worst (pandas-wise) when he has staph...so I would still say it is pandas (well, technically pitand, but I think everyone refers to everything as pandas these days). Things will get easier when they lump all of this into one diagnosis (when they change the name and take "strep" out of the name). Does anyone in the house have impetigo? Just curious b/c once when DS2's impetigo was flaring, DS5 got a positive throat culture for staph (and yes they both were an OCD nightmare at that time). Also, I ended up with staph on my finger where I had a hangnail (and I got very sick during all this, like the flu). This is very contagious stuff.

Yes 500 mg 3 times a day, make sure it is standardized (20% oleuropeins) and that you give it away from probiotics. watch out for die-off symptoms the first few days. Also, some kids may be "phenol" sensitive and may need to take it with a digestive enzyme called No Phenol by Houston Enzymes or Phenol Assist by Kirkman.

That was surely die-off of some sort. Wouldn't you say it was a bacteria die-off since he does the screeching with bacteria? Doesn't the same thing happen when you start vanco? Also, I think GSE is high in phenols (I think, not sure, you have to google). Phenols/salycilates can increase tics and other neurological issues. I have dealt with that by doing epsom salt baths. Some people give a digestive enzyme with phenols called No Phenol (kirkman, i think). I have not had to do that...

Well, here is why I "jumped ship" 1. DS2 got strep while on prophylactic azith. Very frustrating. Is that b/c it was an azith resistent strain of strep? In the past 4 months I have now known 4 ppl in florida who still got strep on prophylactic azith and yes I do hear there is a strain like that down here. 2. With natural abx you have less likelihood of developing clostridia or other gut bacteria which is common due to high dose abx. That is b/c most of these herbs are very broad spectrum, and do not have antibiotic resistence issues. According to our DAN doctor, he says that many pandas patients get rid of strep but then are left dealing with clostridia due to the abx and the clostridia causes pandas symptoms (in our case, worse than strep-related pandas symptoms - I'm talking complete psychosis). Many of these parents do not know their kid has clostridia (or other bacteria) so then they increase the abx, clostridia gets worse, etc., etc. Vicious cycle. This vicious cycle is why I had to "get out"!! Yeast does not scare me b/c strep and bacteria are so awful, yeast is more drunken, silly, annoying behavior. Plus, it is relatively easy to treat. Many ppl have been PM-ing me and asking about yeast. I am going to copy/paste my response (it's long ): I'm not sure where you are located, but I know of a few great DAN doctors who have great success with PANDAS. Scott Smith, a PA, just relocated from Florida to Edison, NJ. He does phone consults. Also, Dan Rossignol, MD in Florida is who I see (used to see Scott who used to be with rossignol, but when scott left florida, i switched and have been very happy). Rossignol also does phone consults after the initial visit in person. I know phasmid on the forum has had really good success with a DAN doctor recently, too, I want to say Dr. Lin (not sure). Our first DAN doctor, Andrew Levinson in Miami was a waste as well due to not wanting to treat my boy's pandas. He told me to "rely on the tincture of time"... 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!!

Bronxmom (and momto2pandas), your descriptions of yourself just make me believe even stronger, that I, too, am currently suffering from pandas. I have had some waxing and waning intense emotional problems (the details of which would not even be appropriate to put on the forum) ever since my oldest son's first strep infection. All along, I have always believed that I was falling apart b/c HE was falling apart, or that it was PMS intensified by having a baby. However, that was 4 long years ago and I have seen patterns of my own behavior go up and down with the onset of strep in the house. Not to mention, this is not the first time in my life that I have had extreme levels of stress/crises, yet this is the first time that I completely lose control of my emotions and/or completely shut down! Also, my abrupt onset of symptoms along with diagnosed strep in the house has also happened during times of the month that I do not have PMS and can usually handle anything. I, too, seem to lose all anxiety/panic when I go on an antibiotic! I'll never forget, sometime within the past few years my husband looked at me and said, "boy, you do NOT do well when you are sick!". Thank you for posting this, the details of your diary. I would SOOOO love to read it myself if you ever publish it!! By the way, my cousin as a teenager had abrupt onset anorexia which lasted about a year and then went away....hmmmm.....

I worry about GSE too. DS2 came back with slightly elevated liver enzymes shortly after doing some GSE with him. Could have been coincidence, could have been b/c he had been on diflucan for awhile. But I am rotating it and as soon as we get on top of the yeast I am going to minimize the dose. That stinks to hear that the OLE did not clear up a sinus infection. But I have to say that for a child that big, I would think you would need a much higher dose for an active infection (like 2 pills, 3 times a day) and maybe even add in some colloidal silver or something for a couple weeks... The dose you were using is only one more pill than my 30 lb. 2yo gets just for maintenance! It's not easy with herbs b/c the dose is such a guessing game

I hope it relieves her a little. Well, Oil of Oregano and Grapefruit Seed Extract are antifungal, antibacterial and also antiviral. However, maybe something like Olive Leaf Extract would be better for viruses. You should google herbs for mono and see what comes up. I know that many in the autism community prefer OLE for viruses...she may get a die-off reaction either way. Let us know how it goes!!

It sounds like you need a DAN doctor who specializes in pandas. They treat yeast, bacteria, strep, you name it. and yes they use abx and rx antifungals (which will knock yeast out of the ballpark). I guess you already guessed this since you mentioned it, but constipation is a big yeast symptom. You can probably get rid of the constip by treating yeast (and even if you can't, I find that regular high dose vitamin c and magnesium will keep things moving and is much more calming, immune supporting and safer than miralax). If you are interested in a good DAN doctor, PM me and I can tell you who would be good based on where you live and if they treat pandas, etc. I can also give you the name of some herbs that you could get started with to kill yeast while you are waiting to get it with a good MD...

No, actually I do 4 days of herbs. For example, I am currently rotating: grapefruit seed extract, oil of oregano and biocidin (4 days each). there are many others to choose from: caprylic acid and pau d'arco come to mind. I think you can rotate after a week each, too. I know alot of ppl only do 4 days b/c then the body cannot become sensitive (ie develop an allergy) to the herbs. I am actually thinking about rotating in some diflucan, though, to give the gut a break b/c all of the herbs I use also kill good gut bacteria... (but then again, they also kill strep )

haven't tried l-theanine on my kids, but after reading this i will keep it in mind!! I have used it myself and it has helped me with mini panic attacks...

I am so sorry! Is mono a virus?? A bacteria?? I am afraid to say the next thing for fear of becoming known as the crazy herb lady on this forum, but if I were you I would tell her to run, don't walk, to Whole Foods and get the following: Oil of Oregano (Oreganol brand - must be drops, not capsules) and Grapefruit Seed Extract (Nutribiotic brand - drops, not capsules). Tell her to try Oil of Oregano first. Add a few drops (maybe 5) to an ounce of water and mix and gargle it, then swallow it. It will kill a sore throat ON CONTACT! And more importantly, will go to work systemically to kill whatever infection that she has. I have been using this product for over a year and EVERY SINGLE time I have a sore throat, it kills it. I have been able to completely cure and stop a strep infection in it's tracks (INCLUDING very bad pandas symptoms) until I could get to an MD and get the proper abx. She should do this 3 times a day until she can get to an MD or an abx... Either way, I feel your panic and I am so sorry, I too can't imagine not being able to be there with her...UGH!

STEPH!!!!!! I am so happy for you!!!!!! and the time frame was quick too!!!!!! that is quite high...i just looked at the ole i gave ds for a long while.. it is 500mg but only 6% oleurop??? i was only giving 1x a day too.... so your dosage is quite a lot higher have you thought about tea tree oil for yeast..lady at traders said to use when brushing teeath and i thought that GSE was supposed to be good at treating yeast....??? Thanks! Like you, I am so scared of talking about it and jinxing myself. DH feels the same way! But we have been amazed this week. The OLE dose I chose due to anecdotes from many autism moms with pandas kids. That's what they all found successful, so I'm going with it... As far as yeast, well I don't think you can ingest Tea Tree Oil, can you?? Also, yes GSE is good for yeast - it seems to be doing something b/c they both got major herx reactions in the last couple days (meaning yeast symptoms got much worse - I kept saying to DH, tell me this means that the yeast is dying and it will be over soon!!! we're talking rashes, diarrhea, drunken silliness, hyperactivity...both kids - ugh!)...but like I always say, i will take yeast behavior over pandas behavior ANY day!!

Have to be honest, diflucan and keto only seem to go so far in my house. I think, like they say, the yeast morphs and becomes resistent to it. I seem to have better luck with an antifungal rotation every 4 days, keeps the yeast guessing, "what's she gonna do next?" LOL!!

I honestly can say as of today that my kids are 100% pandas free (major knock on wood here, right?)!! They are the best I have seen them in a very long time!! My 2yo is unbelievably happy and "with it" and picking up language like CRAZY!! He is also being affectionate!! Yesterday, my very speech delayed 2yo muttered to me, "love you" with a big smile on his face!!! One of those things you put in a baby book if you had the time to keep one!! LOL! And my 5yo has lost the following lingering symptoms in the last few days: throat clearing tic, fears, mild separation anxiety (actually stopped coming in our bed, first time in a month or so), mild to moderate OCD. I don't think he has an ounce of OCD, cuz I'm really looking for it and I can't find it!!!!! With all that said, we are battling yeast, though. It started when he (5yo) was on the abx a couple weeks ago. So yesterday I started some grapefruit seed extract and he is having some major yeast die-off (hyper, acting drunk and silly). I don't quite understand it, but "they" say that OLE will cause yeast in some kids, just like abx, so you still have to do probiotics and even some natural or RX antifungals from time to time. Hoping to come back in a few days to say that EVERYTHING is gone!! OK...aren't we all...

Is that something that needs to be done w/ OLE? No, that is not something that needs to be done but my kids are on so many supplements and now adding an herb (where the dose has come from anecdotes from other moms) I feel like it is something that would help me sleep at night. OLE has been tested and has shown to be non-toxic, but my kids are so little (30 and 50 lbs.). I also see Rossignol. He did not suggest the OLE, though. However, I don't think he would be against it... Did they say it can cause low blood pressure or that it helps high blood pressure? Same with blood sugar? I'm just wondering b/c tenex is also a blood pressure lowering medication, but I am under the impression that it only lowers blood pressure IF it was high to begin with. I am assuming that it is the same with OLE. I will have to make sure that is also something that we monitor... I would not mess around with a vitamin shoppe brand. Whatever you get, make sure it is 500mg per capsule (or dose) and it is standardized to 20% oleuropeins. Anything less will probably be a waste of money (and a real gamble with getting strep). Whatever you get, it is probably going to be potent and you may not be able to hide it. I mix their capsules in a couple tsp of apple juice and add some stevia to sweeten it. They complain, but I say "do you want to get strep" LOL! Then it goes down...

A couple things come to mind based on personal experience. Both of my boys are "spectrum-y" and have pandas. Our most recent round of augmentin did the same thing to DS5. He got the crazy giggles, then when we would try to calm him down he would go nuts and get aggressive (like a drunk in a bar, quite frankly). Turns out he had yeast (per Organic Acid urine test). The other thing that comes to mind is that maybe your son's ammonia has gone up (part of the problem with augmentin). You could have him tested for that and if it's elevated give him Alpha Ketoglutaric Acid to neutralize it. If you don't have a DAN doctor, they could help you with all this. Honestly, though, what you are describing is screaming yeast...if you want to do a quick test to see if I am right, get some activated charcoal, give him 2 capsules when he is "acting up" and see if it calms him down within 15 minutes. If so, it is a gut thing (yeast, bacteria,etc.). Best of luck!!

I'm so sorry, I'm always so worried about what would happen to my kids if my husband and I get into an accident, etc. I don't think anyone would be able to keep up with their care the way I do. Surely they would remit into a very aggressive form of autism, I would roll over in my grave. Oh and I had to laugh about trying to get rid of things...I have to wait until my husband goes out of town to get rid of ANYTHING!! I have to go as far as bringing it to good will or burying it very deep into the garbage cans!!! Ugh...

I don't think any of us meant for you to sit and do nothing. Trust me, I am where you are right now with the eczema/impetigo. But it seems that in many cases, the mainstream medical advice given for impetigo just puts you into a vicious cycle that you can't escape (antibiotics/bleach/steroid: all of which decrease the skin's strength and own "good" bacteria, thereby increasing the chance of reinfection, etc.). I am also concerned that the bleach bath with highly aggitate eczema and then again open the skin up for infection. Not to mention, permanent damage to the lungs and possible later onset of asthma. There are always alternatives.

Please consider using Tea Tree Oil instead. I did it just this morning b/c ds2's eczema is flaring and is looking a little infected at the moment. They say just a few drops per bath, but I use at least 10-15 drops. Also, you could use grapefruit seed extract: check out this link and scroll down to impetigo. I am currently spraying my son 4 times a day with the dilution that they recommend. http://www.nutriteam.com/common.html Tea Tree Oil (and other herbal remedies for impetigo): http://www.herbs2000.com/disorders/impetigo.htm

I have heard that OLE reduces the effectiveness of standard abx, so I just stopped one and immediately started the other. I have not consulted with our pandas doc yet on this but I will, I know he has other patients who have done this. The bottle directions are usually for maintenance dose, not treatment dose. I have always hesitated to use OLE partly b/c I had no idea how much to give. But on the autism message boards all the moms do 500mg, 3x/day. they all swear by it for pandas. I have read every internet site out there about safety and dosage and every site states that you can't overdose OLE, it is safe over the age of 2, and that it is completely non-toxic (unlike other herbs like uva ursi). I know this is not an exact science, but then again, giving a 2 year old full strength abx long term is not quite a tested tx either. I am going to have our doc monitor liver and kidney function every few months for both of my kids...

We don't have a flyer or brochure yet but Lynn is working on it. What I do is print out the page titled "healthcare provider info". Your ped sounds like a real pain...My ped buys into it and I think she thinks that MAYBE my 5yo has it, but she fights me regarding my 2yo (who recently had sudden onset OCD/psychosis and I brought him in based on that alone to test for strep and it was positive - then got better after 48 hours of augmentin - and she STILL questioned his dx!!! maddening! I swear I am going to get him on video next time it happens!). Luckily we have a separate doc for pandas.

I also wanted to add that my 2yo has had an explosion in language in the past 36 hours!! I don't know what to make of it besides something that the OLE is doing (or the lack of abx). I think his vocabulary and pronunciation have doubled or even tripled overnight! I am walking around with my jaw dropping to the floor all day long! My husband hasn't seen him in a couple days - he is going to flip! Oh and there seems to be a major decrease in his hypotonia, as well! His actions/movements are so quick and precise all of a sudden. And he is happier, more interactive!! I hope this is not a fluke! I hope I am not jinxing this child! LOL! This got me thinking that maybe the OLE is clearing out some resistant strep or maybe clearing out some viruses that he has been carrying around his whole life?? He has been developmentally delayed since the age of 4 months.

Thanks mom love! Well right now I puncture the capsule and squeeze it out and mix it in apple juice. I have not used the liquid b/c I don't know of a reputable brand that does not contain the alcohol in it (do you?). I just ordered a different brand (New Beginnings), though, as the brand I am using (gaia) is not potent enough and it is a pain to mix it the way it is... Thanks, mati's mom! Well, I went on another round of abx for myself so the sore throat is better! When I am done I am immediately going to transition to a high dose of OLE so it doesn't come back again... Good luck Packer Fan! I hope it works for you, too! Let's keep in touch, I would love to follow your progress...

Well in our experience, ds2 got a staph infection back in january and it created VERY BAD pandas symptoms. I don't know, I still wonder if there was some strep in there b/c he was psychotic! Augmentin cleared up the impetigo and also the pandas symptoms within 2-3 days, but after 2 weeks of augmentin, it would always come back!! He must have done 5-6 rounds of augmentin to finally kill it this past august. I don't know if it was one long bout of impetigo or if he just kept getting it b/c he has eczema. I do think we finally got it, though. In the end, I had to do a 20 day steroid taper to get rid of the last of the OCD. I hope you are able to get on top of it! It's a killer!! Ugh! I really stay on top of controlling his eczema now that I know how easily a bacterial infection can set in... And yes I do think that DS5's pandas symptoms were affected by DS2's impetigo... Let us know what happens!