Stephanie2

Not sure about a specific connection, but i think many on this board use this to "knock their pandas kids out"!! LOL! J/K (well, actually I'm serious!) I have used melatonin during an exacerbation and it saves the day!! As far as S. Boulardii, it is a "good" yeast probiotic that can be taken at the same time as an antibiotic b/c the antibiotic will not kill it. I don't know why but our DAN doctor does not like S. Boulardii to be used long term. He said something like "I have seen it turn on some kids" (like they started having an autoimmune response to it or somethiing). He also said that if it is taken at the same time (meaning on the same day)as an antifungal you could see a die-off reaction when the S. Boulardii dies. With all of that said, I do use both from time to time, just not long term.

I would almost say ds5 is better b/c yeast is better, and as of today (knock on wood) pandas symptoms are better too.

For those following our scary "venture" away from abx, just thought I would let you know that DS5 has now been off of abx for one week, and despite the fact that my own strep came back for a couple days after discontinuing my own abx (i did not take any herbs, though), he is still improving each day. Doing well on all fronts: yeast, bacteria, strep. Also, as of Sunday night DS2 has been off abx and he, too, is doing very well. I would say he is at about 90% (same place as when he stopped abx). I am watching him like a hawk b/c he had strep 2.5 weeks ago and I stopped full dose augmentin after 2 weeks...hoping the OLE keeps him steady. So far, so good... Our Kids ASD - Olive Leaf Extract This is a link to a website that sells supplements for autism. There are 4 high quality OLE products to choose from. In general, people use 500mg (standardized to 20% Oleuropin), 3 times a day, away from probiotics. This website will give you free shipping if your order is over $40 and you enter the coupon code: FREE at checkout. Hope this helps! I'll come back with another update each week (good or bad)!

If she is looking for more under 3 kids, let her know my 5yo started at 19 months and my 2.5 yo started at 15 months!

Not sure if you read my post above, but like I said it was one of the final puzzle pieces to get control of my boys' pandas. I definitely recommend trying it. DS5 and DS2 are on 3mg transdermal at night. Just like with IVIG though, the acute bacterial infections have to be controlled.

I know this post is moving down, but just in case anyone comes back to it, I made a mistake when I gave you guys the dose of OLE that I give my boys. At this very moment I use Gaia brand and I said that I give one capsule 3 times a day. However, I later looked at the bottle and noticed that I am not giving enough! I guess many ppl with pandas kids give 500mg, 3x/day. But I noticed that the product I am giving requires TWO capsules to equal 500 mg. Also, apparently it is better to give a product that is standardized to 20% oleoropins (sp?). The brand I am using is only standardized to 10%. So I did some research and here is what I came up with, this website specializes in ASD: Olive Leaf Extract products

I do highly recommend him. He knows pandas inside and out. He has two boys of his own with pandas. He does IVIG, but you may want to check with his new office staff to make sure he still has access to it. He is easy to talk to and he is very accessible on most days. It is expensive to see him b/c you have to pay out of pocket and then seek reimbursement (also he will want to put your child on a lot of supporting supplements and order a lot of labs, some through quest, some through private labs).

I also use Udie's bread from Whole Foods, ds5 goes through about 1 loaf a week. You are supposed to keep it frozen so that it stays fresh. I pull out 2 slices the night before and put it in a ziploc bag and leave it out on the counter overnight to defrost. Then I either make a peanut butter and jelly sandwich (sometimes I use sunflower seed butter) or I make a turkey sandwich. Ds2 does not like the bread so I make his "sandwiches" on very thin rice cakes from whole foods. Also, gluten free pretzels, chips, fruit cups, etc. for snacks... PS. I am sorry that your parents say those things to the waiters. If it makes you feel any better, my parents say the same type of things about how I "feed" and medicate my kids. They just don't get it and probably never will...

Actually he left the practice in Florida and has started practicing with another doctor in NJ (www.drneubrander.com). I am now seeing one of his old partners, Daniel Rossignol, MD.

For those of you who responded that your children did not respond well to it, did you play around with the dose? I have heard that if you do not get the dose exactly right for your child then they will respond adversely (for example, a too high dose it not good, sometimes the lower the better - some docs don't know how to dose properly). I don't know the specifics about that b/c both of my boys were put on LDN 3mg per night, administered via transdermal cream between 9 and 11 pm and they have responded wonderfully! I have not had to change the dose. I honestly feel like this stuff is IVIG in a bottle (which ds5 has had done before). We have it compounded and then seek reimbursement from insurance so the cost is minimal. My boys are/were close to the spectrum (if not on) as well, but we added it to their protocol for pandas. I will say that maybe it will not pull a child out of an acute exacerbation, but it will help maintain the gains from a steroid taper or IVIG. I added it for my son after low dose IVIG, and I added it for my other son after a 20 day steroid taper. It held them steady and even added to the improvements immediately. I have also heard that it works best if the child is strictly gluten and casein free (as these act like opiates in the brain for some kids, and LDN is an opiate antagonist). My boys are gfcf, maybe that's why they responded so well...??? We do cheat on the diet occassionally, though. There are many who get success without the diet. DS2 is having surgery tomorrow am and I was told to stop LDN 2 nights before (blocks the effect of RX pain meds) and sure enough the kid was afraid of his own shadow tonight at bedtime and was kind of fussy all day... We have to go another few days without...ugh!

DS5 does, but he also gets them when he is deficient in magnesium (ie I forgot to give him his magnesium or he hasn't had an epsom salt bath lately)...

I tried the bubble thing (pulled DS5 out of prek last year for 2 months and he and ds2 STILL got strep during that time). Also, ds2 is not in school, is on azith weekly and he got strep last week, and not from his big brother! Unfortunately it is everywhere... Sorry it got you again...:-(

O.K. I see here that a compounding pharmacy mixes it up - but where did you find a doc to prescribe it? Well, I know you could get it from a DAN doctor (if you go that route, call around first for one that has experience using it...the three that I know of are Drs. Rossignol and Bradstreet at www.icdrc.org located in Florida and California, and Scott Smith, a PA that works with www.drneubrander.com in NJ). You may also be able to get it from an integrative medicine doctor who is willing/able to prescribe it. Here is the website to search for DAN doctors: Autism Research Institute You can PM me if you find someone near you and I can let you know if they are "reputable" within the autism community...

Who is getting the steroid taper, ds5? For what reason? My friend tried oxytocin on her ASD son and she did feel that it helped social interaction... Talk to you soon!

Well, I have been doing biomedical for the past 1.5 years with both of my boys and it has taken me much longer than usual b/c it seems like every time I add something there was a pandas flare so I always blamed it on the most recent supplement. Then I learned that they both have pandas and it has taken over a year to get them stable. So now I add things only when they are completely pandas-symptom free and usually one at a time, one week apart. Mati's mom, my son is calling from the crib, so I'll have to get back to you on the brands/dosages. They are also on a gluten free, casein free diet but I have gotten more results from that in terms of autism and asthma symptoms. In my opinion the diet has done little for pandas (ugh!)...

As we move along on this journey, I like to update the forum from time to time on where we are. As many of you know, we have run into problems with yeast/bacteria so we are not doing great with that, but in terms of pandas, things are really good around here (despite ds2 getting strep last week)! So here is some of what we are doing with DS5 and DS2: LDN (Low Dose Naltrexone-modulates immune system and antiinflammatory) - very immediate and excellent effect Spironolactone (mod immune sys and antiinflam) Enhansa (antiinflam) 5HTP (has helped with OCD and meltdowns tremendously - 75mg for ds5, 50 mg for ds2 given at night) Magnesium Glycinate for tics and ADHD Taurine for tics and ADHD IVIG (one transfusion of 1mg/kg for DS5, kicked in at 3 weeks post) Steroid bursts (very temporary effect) Steroid taper for DS2 - excellent and results stuck until next strep infection (last week) azith weekly (up until a few days ago) It was also suggested that we try Namenda for meltdowns and mood swings, and when I tried it in ds5 i witnessed a lot of things that I liked (increased focus on school work, etc.) but some things I did not (hostility/sadness/deflated personality). We are also doing things for oxidative stress and poor methylation which also increase inflammation: grapeseed extract, lots of antioxidants, TMG, Methyl B12 injections, methionine, folinic acid. If I had to pick out the things that helped the most: IVIG, Steroid Taper, LDN, Spiro, 5HTP Just thought I would share!

I don't think it is too late (based on my own experience with DS5 who suffered for 4 years B4 we got it under control). But you may need many tools to come down hard on it. Here is what I had to do: 1 infusion of IVIG (1gr/kg) Spironolactone (immune mod and anti-inflammatory) Low Dose Naltrexone (immune mod and antiinflam) Enhansa Several rounds of high dose abx 5HTP I'm sure I am forgetting something!! Best of luck!

I have also pulled DS5 out of exacerbation (with pos strep test) with Oil of Oregano. Some websites/authorities say not to use in a child less than 12 years old, so I am going with OLE. However, I use Oil of Oregano for MANY purposes in my house (yeast, UTI, sore throat). The amazing thing about it is that it works immediately. I use the drops, I mix them in water and I add a little stevia (natural sweetener), mix it up and syringe into their mouths. The do tell me it burns but they are used to it now. Even DS2 doesnt' complain anymore.

Personally, I don't see why Dr. K says that 18 months is the youngest, and I think the NIMH says 3 years is the youngest. HOW DO THEY KNOW THIS?? Are they going around screening infants for pandas? I KNOW FOR SURE that ds2 got it when he was 15 months, if not sooner. As a baby he would have periodic bouts of chronic irritability. I always chalked it up to reflux, but looking back I wonder. DS5 had his first exacerbation when he was 19 months. Both of my boys have documented strep around those times. Not to mention, I am really starting to feel convinced that I started having pandas episodes coinciding with DS5's first pandas exacerbation (and I got sick with him). I seem to get strep everytime my kids do...I would love to have the CAM K test done on myself, but not interested in coming up with the $400 to do so. So you ask if age matters and I will say that in my house I don't think we fall into the "appropriate" age categories.

Well I plan to use 500 mg 3x a day for my 2yo, so I would think you could go up. Honestly, I need to do more research on this b/c I don't want to overdose these kids, but from what I read it is completely nontoxic even at very high doses. I was under the impression that monolaurin is more antiviral, but I am not surprised that it has antibacterial properties, too. My boys are on 3mg of LDN each night - I apply it in a transdermal cream from a compounding pharmacy. It has to be given between 9 and 11 pm. It is also available in capsule form. From what I understand, sometimes you have to play around with the dose until you get it right. I did not have to do that, they both seem to benefit from the dose they started on. Also, I hear that it works best for some children if on a gluten and casein free diet. My boys are on this diet but we do cheat now and then. I know there are many who use it and are not on the diet.

I may have been the "olive leaf poster" that you are referring to. I recently posted that I am jumping ship from abx b/c my kids' guts are in the "gutter" The reason that I have chosen OLE is b/c I am also a member of several autism boards and there are many moms on there who's children also have pandas. SO MANY of these moms swear by OLE alone to control/prevent pandas. It has proven to kill strep, it is also anti-fungal, antiviral, anti inflammatory and an antioxident and supports the immune system. Also, I keep reading that it does not kill the good bacteria, but I give away from probiotics just in case. On paper it sounds like it's perfect for PANDAS. I do have some previous experience with it. Back in Feb when both of my kids had sudden onset severe pandas episodes, I immediately gave them OLE and it really did pull them out of it within a few days. Unfortunatley, I did not stick with it and jumped to azith b/c I wanted to make darn sure that they didn't exacerbate again. But now ds2 has gotten strep even on azith, and they cannot tolerate the daily high dose abx b/c they keep getting bad yeast/bacteria (even with antifungals, vancomycin, a trillion cfu's of probiotics). So, 2 nights ago I took the leap. Discontinued all abx for DS5 (augmentin, vancomycin) and also discontinued the antifungals (ketoconazole and nystatin). I do have to say that so far there has been no negative effects, and I even think things are improving, as he was easier to get off to school this am. I will come back and report to this thread in a few days how things are going. DS2's days with abx are numbered as well...he had an active strep infection last week so I am going to give it more time with daily augmentin and then we are going to jump ship with him, too. BTW, if you are wondering about dosage, I give my kids 500mg, 3 times a day, Gaia brand (got from Whole Foods but available on-line). I got this advice from a mom on the autism message boards who is treating her 8 year old and she says this amount has held him steady for a long time. She (and I) also uses LDN (Low Dose Naltrexone) to address the inflammation and to modulate the immune system. My boys have gotten so much better in terms of pandas with LDN...

Just to give you an idea of what sudden onset looks like in a small child: When DS5 had sudden onset at the age of 19 months, he LITERALLY had to be carried on my hip for 2 months straight or there would be ###### to pay (he was also very hyper and OBSESSED with stop signs, and he had a facial grimace that my husband thought was him making a funny face at the time). This happened overnight and was EXHAUSTING! I remember telling one of my non-mom friends how AWFUL the terrible two's are, and why would ANYONE want to do this again, and DON'T DO IT!! LOL! Turns out he tested positive for strep 4 months later, he was constantly sick as a baby and toddler but that was the first time they did a strep test. Then DS2 came along. When he was 15 months he had sudden onset tantrums, irritability, wanted to be held alot, sudden sleep issues, and opsoclonus-myoclonus movements of the eyes. I thought he was having seizures and brought him to the neurologist (he also has chiari mal.) who believe it or not suggested that maybe the eye movements were tics and asked if he had strep recently!!! As you can imagine, I almost FELL OVER IN MY CHAIR! I didn't know about the high incidence in siblings... Anyway, over 2 months time it all went away (including eye movements) and there was no problem again until 5 months later when he developed impetigo.

Well, my 5yo does this and has for a long time! Funny thing is that I never told him what they are called b/c I am afraid the work "breast" or "boobies" will turn into a tic and be repeated over and over in public!! He thinks they are called "milk pumps" because he used to see me pumping my boobs when i was nursing his little brother. to this day he still asks to see my "milk pumps"!! I figure if he says "milk pump" over and over in public, ppl will just think we live on a farm...LOL!! Anyway, I do think it is somehow tied into pandas, but i will also say that when I find him "playing with himself" or wanting to play "doctor" with his friends (which consisits of getting naked and checking each other's bodies out ) that this is a sign of yeast. When I treat the yeast, he completely stops this behavior (playing with body parts). But the wanting to see my boobs doesnt' always correlate with yeast, so I'm not sure. I don't know, maybe that is natural curiousity of boys!!?? My husband is a boob man so wouldn't surprise me!! Haha!

Aye yi yi!! Horrible! Also, if you suspect strep go get some Olive Leaf Extract or Oil of Oregano. I have been able to pull my 5yo out of the worst of exacerbations temporarily with that stuff while waiting to get abx. For OLE I use Gaia brand, 500 mg 3 times a day (may want to use more for your daughter), and Oil of Oregano I use Oreganol brand, 2 drops, 3 times a day (again you may need more). I feel for you and sorry about the advice part...I'm not a good listener!! LOL!

Well, thanks for all the responses. It is comforting to know that I am not alone. BTW, as I have said in the past...I went to Miami Children's Hospital today (becoming a regular... ). There is nothing like a visit to a major children's hospital to take you out of your pity party. It can always be worse, I can't even begin to describe the things I saw today. I look at some of these children who are downright deformed in one way or another and I think, ok my life is very very hard, but the difference is that at least I have hope for my children. These other poor kids do not really have the potential for normal life whatsoever. Some are barely aware that they even exist...very sad. There is a light at the end of the tunnel for most of us. We don't know when we will see that light (and sometimes you see the light, come out of the tunnel, but then go back in), but we do know that it is there... BTW, it didn't help this week when my therapist kept asking about pandas as if it didn't really exist or that my kids didn't really have it (sometimes I feel like she wonders if I have Muenchausen By Proxy!). It's just so fun trying to convince ppl that my children are the ones with the mental disorder, not me!! Why does this illness make us moms look so crazy??? Agh!