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All of this is a little over my head, but, I was wondering if any of you see the relation between Glutamate and L-Theanine L-Theanine: http://en.wikipedia.org/wiki/Theanine For my sometimes extremely hyper dd6 (who I would not say has ADHD, but by God, can she be hyper, off the hook) I started her on Lutimax for inflammation, which worked fantastic on her gut inflammation, but made her hyper (we also have some gut issues, like phenol intolerence, etc.) Anyway, they make Lutimax also w/ L-theanine, if you want to buy it that way, I am assuming in case your kid gets hyper on it like mine has- I ended up buying separate L-theanine chewables, and they do seem to calm her down- when I research L-theanine, it relates to glutamate, but, I don't really understand it, either :-/ And it does talk about the dopamine, which freaks me out, but, desperate means call for too much supplement buying, so I gave this a whirl. I've tried Gaba, 5-HTP, and they always had a negative effective on her. The l-theanine does not seem to- it actually seems to calm her down a bit.

We brought a lot of snacks and drinks, gave throughout- also the benedryl helped. I am sending you good thoughts---hang in there---get through today, and you are done--- I also squeezed myself right next to my dd6 in that chair-brought comfort object (her blanket) So sorry----

Sending you good thoughts as well-- I was feeling the exact same way before our first IVIG- I gave my dd6 the Honest Kids juice boxes to drink before and after (she normally doesn't get these) It will be just fine---- Do they have a DVD player there? I found watching DVD's our saving grace- she wasn't up to hand held games or drawing while undergoing the procedure- I sat right next to her and we zoned out on Sponge Bob. The hardest part was getting the IV in that first day- but it really wasn't even that bad, but yes I had to hold her arms and legs- and we were lucky, she agreed to keep it in over night - because she didn't want to have it put in the next day- we put a medical white sleeve over it and called it her 'cast' (she always wanted a cast) Anyway- it will be okay---hang in there.

LLM- of every parent review I read, not one said they were adhering to a lower carb diet. I will certainly keep you updated :-)

Sending you good thoughts- we did our 2 IVIG's about 6-7 weeks apart, and after the 2nd one, right after, it was glorious. We also had rocky times after the 1st.

I know, I don't want guinea pig try outs either, but I am a bit desperate- we tried a product called Intestimend for the last 3-4 weeks, and while it beautifully reduced my dd6's gut inflammation, the ingredients gave us a huge yeast flair- pulled it, now back on an antifungal :-( I will post how we do with the Lutimax- should be here today or tomorrow. And, while the price was high on Lutimax, and part of me is loathe to 'buy something else' the parent testimony I read was VERY compelling.

Hi- I just ordered the Lutimax supplement, in the pediatric poweder form. There is a yahoo/lyme/austism board I lurk on- people are getting GREAT results with the Lutimax product. It is only the leutolin in Lutimax, which I appreciate, as I don't want to add anything else. Another board I lurk on has also posted VERY positive reviews with this product. http://www.lutimax.net/ My dd6 has gut inflammation as well as the pandas inflammation, I am anxious to try this product. Currently we are doing high EPA fish oil. I only use ibuprofen when really necessary.

The social anxiety decreasing after pandas treatment has been a big wow for us. Happened when we very first started Azith., and after IVIG, it has been wonderful to watch. We did try Tenex. My dd6 does not have ADHD (oh, but she can be hyper) anyway, it was before IVIG, she could NOT control her body- pinch, run, hit, run (attacking people in the house) and her verbal tics (coprolalia) were also out of control. I was desperate- tried Tenex (intuitiv time release version.) It ramped up her OCD and separation anxiety to the point I could not leave her side, and left her tired and very scared feeling. Tried it a 2nd time to make sure, same thing. Dr. said he never heard of that (of course.) So, no, absolutely did not work for us, the Tenex. But, all our kids are different, right? Just thought I'd throw in what we saw with it.

Yes. When my dd6 'is not doing well' she will come into our bed in the middle of the night - doesn't happen often, maybe 10-15% of the time- but when she is 'not doing well', yes, she is twitching and moving all around- not tremors, per say, but it appears she cannot control her body. I do give 1 mg. melatonin a night, which helps her fall right asleep (even when intrusive thoughts start) and most of the time, she sleeps through in her own bed. And when we look in on her, she is still, not having these movements while she sleeps.

By the way, went to the Lifeway website, and under kefirs, it does say 12 of the strains they use, that one of them is the strep. However, on the bottles I buy, there are 10 strains listed, NONE of them the strep strain. Just called the company, and they confirmed that the bottle is accurate, not listing the strep strain, because it is not in this particular product.

Nope, I have not been able to find ANY (and my dd6 reacts to strep strain) However, I am using Lifeway organic (some are not organic) lowfat Kefir cultured milk smoothie- very tasty! and has probiotics without the strep strain.

Hi, I have recently been thinking a lot about this, too. For the last while, I honestly could not tell whether the Azithromycin was making a difference, or not. I told our Dr. this yesterday, at our appt., and we both agreed if I can't tell, it is probably not. And, to top it off, my dd6 had gut issues before we started pandas antibx., we have been working at it for a few years now, she has a good diet (proteins) given tons of quality probiotics. Recently I added a product called Intestimend which has reduced her gut inflammation. But, the antibiotics are not helping our healing gut. We are out of school, she is not signed up for children centered activities this summer. However, our Dr. yesterday switched us to Cephalexin, 2x a day :-(. I am following his lead on this one, he wants to see if there is some strep in the body that is hiding out, we've never been on this one before. I have a 3 month script, plan on doing it for 1 month, and we will see how the response is- it would be nice to go off of antibiotics after that, and wait until school starts to start something up again, since it will then be strep 'season' again. It's a hard call. Obviously some find they can't go off because they lose ground. But I hear what you're saying.

Thanks! I will let everyone know. And I just wanted to add: perhaps my 8 week update sounded negative, but it's not. I am very glad we did our 2 IVIG's. She is BETTER. If I had to gauge before and after, I'd say we are about 70% better, and having the scary breakdowns gone is HUGE. And, there is a virus in our house, perhaps this is what's setting off our latest.

I did read your link, I don't know what to say, it was a little back and forth. Anyway, I am going to try this, as I trust our Dr. who is VERY well experienced, and certainly knows about our inflammation, and if it's a hit, I will post and let people know.

Haven't read your link yet (I will) but the Dr. we see wrote a book, I just pulled it out, and in his book there is a chapter on TH1 adn TH2. From the cartoon drawing at the beginning: It describes the TH1, (and I quote), as the bad-a$$ cell that fights bacteria, yeast, fungi, and viruses. I also bring my friends to help. TH2- I'm designed to make antibodies. That way if a disease comes in, I will have my patriot missile babies attack and destroy. Vaccines have adjuvants added to them, as a way to further stimulate the immune system, to ensure that there would be antibodies made to the vaccine, and the immune memory would be robust...that is the protection would be for many years. (2nd cartoon) TH1 Cell is saying: I'm too weak to fight infections and bacteria now. What happened? TH2 Cell: Oh my God! I'm making tons of antibodies! Help! Doesn't this make complete sense in the pandas world? TH2 is large and in charge, creating these rouge antibodies, and TH1 therefore becomes weak and can't fight off anything. By the way, not trying to bring the vaccine issue in at all, but is is one way the TH2/TH1 get out of whack in the first place. He also says in the book: Autoimmunity results in tissue destruction and inflammation.

No, she is not immunodeficient. There is another yahoo board I frequent (not the pandas one) where I have heard good reports on this drug (and our Dr. said there is virtually no side effects.) From what I am reading, it is deemed an anti-viral medication. While I have never had viral titers pulled on dd6, it would not surprise me she has viral issues- she runs low grade fevers often- and once I did an anti-viral natural protocol on her over a year ago, and it pulled a chicken pox rash (although did not itch, but exactly the pox of varciella) all down her body for an entire month. She has been fully vaxxed with the latest and horrible USA excessive schedule, and I personally believe her immune system is jacked up from that. JMO. I'm going to go for it- I trust my Dr. but I will ask about inflammation, but have never heard it associated with this.

Just had our 8 week post update with our pandas Dr. (who is also a DAN! Dr.) We have had 2 lasting effects- the exorcist rages, that were scarier than all get out, where she would lose complete control, and be 'gone', the ones where I did not know whether to call an ambulance or not, are gone. Gone. Social anxiety seems much better, and sticking. Post 2 weeks was INCREDIBLE- the happiest I have ever seen this child. Since then we have had fits and starts- seeming to pull out, but, now, not pulling out. Back to the tourette 'swearing' some vocal tics, compulsive hitting, OCD ramped up. Our Dr. is grand, he offered to go to our HMO insurance, who does not believe in pandas, has been a brick wall, and present our rock solid case for IVIG to continue (as we cannot afford anymore out of pocket.) I said no, just personally, I do not want to continue 1x a month with pooled blood products. And, our Azith. seems to be doing nothing- except causing yeast flairs AGAIN (we have a bad gut on top of pandas) Anyway, he did say he had been able to get some of his pandas patients off IVIG's by boosting TH1- TH1 and TH2 regulate the immune system- TH1 fights the virus, bacterial, infections. Isoprinosine or Imunovir -- I searched here, have found no one has talked about this, so thought I'd post about it. Until we get that, we are back on an anti-fungal for yeast, and instead of Azith. he is giving us a round of cephalexin to see if we can't eradicate any more possible strep that may be hiding. And then, I think we are off antibiotics, until school starts, not sure. Although I do have my secret stash, like money under the mattress. Feel free to comment, always interested in what you smart people have to say.

Hi Dave, and Welcome-- I just wanted to add: it does take some time to gather this knowledge, but I found it really helpful to: Read old threads. I would go to the top of the page, and select old page numbers, and scan through some old posts. Yes, this does take some time, but I learned a great deal doing this- I would stay up at night for a few extra hours. Also, Autism One conference 2010 had some excellent pandas Dr.'s giving lectures- if you google it, you can buy the 1 hour DVD's. The search engine on this board is a mystery to me, it never seems to work. So, I use google, and end my question with 'pandas' and it will bring up this board and older posts related to my question. And lastly, phone consults with some pandas experts (Dr.'s) were helpful to me-- There is also a pandas/autism yahoo group. HTH.

Not to be negative, but Gaba and 5-HTP had the opposite effects on my dd6-- and I really wanted them to work. I tried both supplements a few times, to really have an idea, and both had a negative effect.

I'm actually holding off on getting our Diflucan, but it's always nice (for me) to know it's there- just after I posted earlier, I think I am starting to see my dd6 pull out---gave 400 mg Azith. last night, ibuprofen today, and she is now willing to eat the protein meals/snacks that I provide her, and has been very calm this afternoon. But anyway, one of the biggest clues here for yeast overgrowth is her food demands- going for the carbs/sugar (although I don't keep sugary stuff here, really, because of our yeast issue, and try to always go for protein throughout the day) white coating on tounge red ring around anus goes to weepy standing on head climbing like crazy Just a few thoughts. But if you haven't been giving probiotics with all the antibiotics you've been doing, you may very well have created yeast overgrowth.

I am currently having a really hard time right now too, with these two issues. But just from reading your post, it sounds like you need to consistantly stay on the antibiotics. My dd has had yeast issues before we started antibx. so this fear/hate of yeast is always there for me. She recently lost a tooth, and right now we are in a major flair. OCD ramped all the way up, hyper, aggressive, vocal tics. (I don't know if our flair is from losing the tooth, although could be possible, this pandas thing is such a strange bird to me sometimes.) *sigh* I do give good quality probitoics all the time, away from the antibiotics (do you? this helps.) But yeast here generally looks like: Demanding carbohydrate foods. Hungry all the time. Wants the 'junk' food. All the time. Weepiness easily. But, some yeast and pandas can look like each other. So, right now I'm as confused as you ;-) But, things are really tough right now- I just called our compounding pharmacy for a refill of Diflucan, am back to full dose Azithromycin, and giving ibuprofen, and praying we pull out (soon?) Also, dosing my probiotics.

This thread is fantastic to read, it is the hardest part here, as well. I have 2 other children without these issues, and it is completely different. My DH and I seem to be an okay balance: Yesterday, we all wanted to go to the bookstore. My dd6 can only wear GRAY colored pants, and currently only 2 sweatshirts. I allow this. I could write pages about how for years we have worked on this. Bottom line: At this point, in order for her to function and go out in the world, which she wants to do and needs to do, certain clothes criteria must be met. Well, I put her sister's pants on before dressing her, something else went wrong, pandas dd6 LOST it. On the bed, obsenities yelled at me, on and on. Daddy is trying to comfort. I had a human moment, and just thought: I am so tired of coddling her! Now we can't go anywhere, all of us are punished, because of these clothing (OCD) issues! Maybe if we stop doing this, it will change! So, I spoke outloud that me and sister are leaving to go, and she can just stay home with Daddy since she can't pull it together. (Esculate! Esculate!) My DH turns to me, looks hard, and says: 'Aren't YOU the one who tells ME she is NOT WELL and can't help this??' He was right. So I do my thing where I wrap her tight, soothe, love, struggle if she is fighting me, 15 minutes later, we are out the door and at the bookstore, all of us. Bloody hard! It can get so frustrating!

(I'm sorry, I tend to think of yeast a lot) But, I just wanted to say, since she started/is on an antibiotic, and she is consuming an overload of sugar, be careful it is not yeast overgrowth going on- is she getting probiotics? Is there anyway you can provide substitutes in your house besides the gallons of ice cream? Just some thoughts---

Congratulations--- that is HUGE :-) Wonderful!

This happened to us: 1st HD-IVIG, the first few weeks were really hard! Then she settled, it seemed, and around week 5, while on daily Azith., 4-7 kids in her K class dropped out/came down with strep. I kept her going, because she seemed to be doing great, we were on the antibx., at the end of the week, bam! it seemed all things pandas were back, even though she did not get the actual strep infection- just being around it kicked up the autoimmune part, apparently. Panicked, not knowing if she would ever pull out again, I scheduled another HD-IVIG (patience I lack) and right before we went, she DID start to pull out. Anyway, we did the 2nd (and last, looks like) IVIG, and while we have had some bumpy weeks, overall, much better. And, I pulled her from school for the last 5 weeks. I am learning as we go, she does pull back out- and the 'bumps' are shorter lived. Really, I have no choice but to wait it out, keep her on the antibiotics, try to keep the stress down...