Stephanie2

5HTP has helped a lot per our DAN doctor. I give my 50 lb 5 yo 75mg at night, and my 30 lb 2yo gets 50 mg. It has also helped DH tremendously with depression (he takes 200 mg at night).

I have Sac Boulardii in the house but I am not starting it until we are done with diflucan/ketoconozole, as our DAN says that taking the two together can actually create a die-off reaction when some of the Sac B dies from the diflucan. Fixit, Scott said that Grapefruit seed extract can elevate liver enzymes, maybe that is what Dr. R is referring to? In our case that did happen so GSE is not part of my arsenal anymore :-(

I'm having a serious pity party tonight, maybe I DO have pandas and the darn amox is not cutting it!

I don't even have anything in common with magazines!! I hate the parenting magazines (BTDT, got anything on rages??), and all the Good Housekeeping ones, please, who has time to organize, bake, diet, buy sexy underwear for their husbands!! LOL! I just sit there and dream about my old normal life and then close the magazine and go back to reality...

Stephanie, What dose of OLE are people using? I've been using it for my daughter for several weeks now. She's also on full strength Augmentin, so I don't really know if it's helping, but I figured it would at least be helpful for gut pathogens. Dr. T. mentioned it to me to stimulate the immune system, but we didn't talk about a dose. I give my daughter 1 cap (gaia brand) twice daily. Susie I also use gaia brand. There is a woman on the yahoo autism boards (Crystal) who uses 500mg 3 times a day of that brand. so that would be 3 capsules a day. There is another woman who gave her child up to 3000 mg a day. I have no idea what is safe. My youngest is only 30 lbs so I don't want to go crazy. There is something to be said for using herbs during abx to keep the gut bugs away. I was doing that for a while but I kept hearing that OLE interferes with the abx's efficacy. So I decided to stop the rotation of herbs that I was doing and now we are a mess. So, if I have to choose one over the other, I am thinking it may be best to go with OLE...? Maybe I should have stuck with both??

OK, so I'm over the abx. My kids guts are so darn screwed up. My husband and I were talking tonight about how ds5 is worse when he has gut bacteria than when he has pandas. And lately, he ALWAYS has gut bacteria. And poor ds2 gets yeast so bad that he is a mess emotionally and he gets a yeast rash that spreads to all different parts of his body. They are on diflucan, they are on a trillion cfu's of probiotics a day, they are on vanco, we have done it all. I just think their guts are crashing!!!!! They keep coming back positive for clostridia and yeast. So here is what I am thinking about doing. Talk me down or talk me up :-) : When the current treatment dose of abx is done for the current strep in the house, stop the abx (one is on augmentin, one is on amox). Slowly DC the vanco, keep up the diflucan for a while and keep up with the probiotics indefinitely. Stop the weekly azith, b/c let's face it, ds2 just got strep on weekly azith. Thoughts? Crazy? DH and I think we have nothing to lose. Last night we had to hold down our raging 5yo...and he doesn't have any sign of pandas.

Peg, don't you have any friend's who's children also have autism? There has to be a way we can have friends!! Actually, I have two friends who each have a boy with autism the same age as my 5yo, but their kids are on the mild end and don't have pandas. They still have lives, they can bring their kids anywhere and everywhere...

I just had a thought. As you may remember, ds2 battled impetigo from this past Jan through end of July. The last time it flared was after a steroid taper. I asked Scott, WHY DID IT COME BACK AGAIN!!!??? And he said that maybe the taper suppressed the immune system so much that it allowed his body to relapse with the impetigo. So there we were doing ANOTHER round of augmentin. I think we finally kicked it, but will it come back next time with do a steroid? Could myco p be opportunistic like that? Waiting for the body's defenses to be down? Does it work like that? Do we all have it in us at all times?

I think I have finally come to accept and realize that I have NOTHING in common with moms who have typical children. Actually, I don't think I have anything in common with ANYONE anymore! How can anyone understand what it is like to hold down your raging child so that you can give him ativan so that the family can survive the rest of the day? How can anyone understand what it is like to administer supplements/meds 5-7 times a day, even while the kid is asleep (we give LDN after 9pm and B12 shot while asleep, sometimes even sneak in some probiotics if we didn't have enough time to space them out from abx during the evening). How can anyone understand what it is like to sit at a birthday party and watch your child for signs that a rage is on it's way, and when the signs do sneak up you hide in the corner crushing and mixing meds like a crack addict? How do I converse with someone who has nothing else to think about besides getting to the mall in time b/c Macy's is having this holiday sale, and she is going to drag her 2 and 6 year old boys there while she shops (unheard of for me, they would have to be heavily, and I mean heavily medicated for me to bring them both anywhere, let alone shopping). And how about those damn facebook posts about mommy friends who are meeting up to scrapbook or run a marathon or just got a great new job?? Or the couples who can actually go on vacation without their kids and be alone with each other! Or the soccor games, or the ballet lessons, the room moms, the bake sale, the halloween costumes and the list just goes on and on. It's not that I don't want my friends to have these things, it's just that I have NOTHING to talk about besides my day-to-day survival tactics, the latest med that is working, but now it's not b/c they have clostridia, but soon it will get better and we will be back in the game, yada yada yada. I think I have tried for far too long to "fit in" with these moms that I used to "fit in" with. But the truth is that I just DON'T! Even my own family thinks we are crazy and that we have created these problems. We hardly ever see family anymore b/c it is so darn hard to leave the house with these kids. They don't understand what is wrong with us. I think they think we are just too weak for parenthood or something, and that we have no idea what we are doing. And I'll be honest, I just can't bare to watch my neices and nephew thriving and wonder what the heck went wrong in my house?? They have the same genes, yet... Just venting. I'm sure many of you can relate and I'm sure some of you can't (if you only have one pandas kid or if your bout with pandas was shor-lived). My boys have had issues that made them look autistic, so I think we may have more problems than most here, but pandas has, by far, been the most difficult to live with. And we have been battling this with ds5 for over 4 years now, and for over a year with ds2. I'm just feeling more and more worn out and isolated I guess... Kind of like the kid sitting alone in the lunchroom, watching everyone else having fun!!

My husband just said, "what about the dads", and I said, "what ABOUT the dads?" LOL I'm in!! Seems like so many of us are on the east coast, what about a meeting point in the middle, like NC or SC? Hilton Head is nice... Not that I have the money, but what about a shopping weekend in NYC before the holidays?? HAHA LOL It's hilarious that I'm even saying this b/c I so don't have the money, but it sounds fun!! I promise not to have a pandas rage while I'm there!

Well since posting this yesterday, i have been toying with the idea of putting our whole family on Olive Leaf Extract. My kids are just doing terribly on the abx (keep getting clostridia, which causes symptoms worse than strep for ds5). Many in the autism community SWEAR by the efficacy of using OLE 3 times a day to prevent/treat strep. Plus it would treat clostridia, without killing too many good bacteria. It is also anti-inflammatory. It sounds great on paper, right?? We are very close to "jumping ship" and trying it. After all, ds2 got strep this past week while on prophylactic azith. I know another family whose 2 boys got it on prophylactic azith as well. So what do I have to lose? My point is, I am also going to have my husband and I take it to prevent us from getting strep and giving it to the kids. I will be curious if it changes my own mental state... BTW, I have also always blamed my depression on PMS (and I do think that has been a problem) but out of my 4 rages in the last 4 years, at least 2 of them occured in my best time of month, not PMS. OK, like I said the kids where a mess, but they and I had strep!!

I am curious what the symptoms of clostridia are, how did you know that your boys had it? It sounds like you keep going from thing (or bacteria) to the next and I am wondering if we are doing the same thing. Well, our DAN doctor can tell just by the specific symptoms and the timing of when they show up (in relation to a DC of abx or a change of abx). Also, we had an Organic Acid Test (urine) done which showed a marker for clostridia. My ds2 gets loose, smelly stool (ds5 sometimes gets loose stool, sometimes not). You can get the OAT test for bacteria, clostridia and yeast done through Great Plains Labs. A doctor has to order it.

Yes, carnitine can create yeast but I have no idea why or how. I just really think you are looking at a gut issue. But I know nothing about the myco p thing. Maybe he got it again? Why else would the titers be rising again? Did he have the screech last time when he had myco p? Maybe you should start the vanco now and not worry about whether or not you will need it later. After all, you have no idea if you will be doing another taper or not. Many ppl need several rounds of it before they can call clostridia (or other bacteria) a thing of the past. I will pray for you and everyone else on this board as I drift off to sleep tonight. It's a real rollercoaster and we need to hang on tight!

Amy, we have so much OCD-type stuff in our family as well. But so does my husband's family - just like you said, hoarding, inflexible, major anxiety when the routine of the day is broken. On my side, my cousin's son (5) has OCD and Tourette's (they are not interested in testing him for pandas (???), and my greatgrandmother had to sit in a chair and count to 13 every time she entered the house. Is it possible that every family has this type of history? Or maybe it really is genetic? I don't know...I just don't know how far to take it. Do I go on abx and risk the whole yeast/bacteria issue for myself? Maybe staying on abx would eradicate my need for lexapro, which would be nice, but then maybe my gut would be screwed up. I just don't want to feel and act so out of control everytime one of the kids gets strep...which is twice a year around here, prophylactic azith or not... DS5 was really impacted by my last "episode". He acts like he wants to protect me all the time now and he gets scared of my reactions. How sad that he now has to worry about mommy's mental health when he has his own mental health issues to deal with.

Where are you at with vanco? Did you just start it in the past few days? Could this be die-off? Is he also taking diflucan? Have you done an OAT test? I really have to wonder if the chronic azith is making things worse and the vanco just can't catch up to the clostridia b/c the azith is making it worse each day. I think that is what is happening at my house right now. DS5 got a HUGE dose of azith on Friday and I don't think the vanco can do it's job this weekend after such a hit. Will take a few days off azith for the vanco to work I think. I could be totally wrong, but don't want you to spend $20K if it's just the azith sending you backwards... I always felt annoyed with Scott b/c I had to beg borrow and steal for azith, but now I see why he didn't want our kids on it daily... I really think you should call Scott and/or Dr. Rossignol.

Yes, but this would be adult-onset for me (I'm 36, started when I was 32 during ds5's second exacerbation). Maybe that is b/c I have never had strep before? I don't recall having it as a child or an adult until the kids came along. The only strange history I have is Reye Syndrome when I was about 9, after having chic pox and being given aspirin, of course. My mom described my behavior as delusional, having hallucinations, acting very angry toward her, acting very confused, in a fog. They did some tests at Phila. Children's and determined that I had Reye Syndrome. Maybe I had pandas instead? Any other adult-onset cases???

Peg, any chance the urinary frequency or bedwetting could be due to yeast? Very common with yeast. Is she acting silly or drunk-like?

Does anyone else think they have pandas??? I have wondered about this for the past year and I am seriously thinking it is a big possibility. I mean I get some very subclinical tics/compulsions from time to time, that seem to happen with the boys' strep infections. But ever since my oldest boy's first strep infection, I have gone into 4 rages myself that always seem to happen when we have documented strep or I highly suspect strep (meaning someone is very sick and exacerbating). When I say rages, I mean throwing things against the wall, screaming on top of my lungs (not at anyone in particular, just screaming very loudly, saying I can't take anymore, etc...). There is usually some hyperventilating involved, along with my husband trying to calm me down which only makes me worse. This loss of self-control is so very unlike my usual nature. All along I have said that this happens simply because I am being pushed to the edge by my boys but I am really starting to think that there is something else going on here. Mainly b/c I seem to feel so much better when I start an abx, even if my boys are still a disaster!!! For example, my anxiety is completely gone after starting amoxicillin this past week (after myself and my son had strep). The boys are still a mess, but my anxiety is gone. I don't want to spend $400 on the cunningham test. I just want to know everyone's thoughts and experiences with this. I am starting to wonder if I need to go on a prophylactic dose of an abx...

So, my boys have had a battle lately with clostridia which has very similar symptoms to pandas. And we can't seem to get on top of it b/c each time we try to go down to a prophylactic abx dose, the clostridia comes back. We were getting close, though, and then - BAM - damn strep enters the picture... Now ds2 and myself got strep, and I think I caught ds5 just in time before he had the worst of the pandas symptoms. So now we are all on abx and there is some kind of bacteria just making my kids NUTS! Tonight we had to hold down ds5 to give him meds to get him out of his psychotic rage. First tried charcoal (which has worked all weekend, but not this time!), then tenex. Then decided that wasn't going to be enough and gave him adivan (sp?). This "cocktail" pulled him out of it, but WHAT THE HECK DO I DO TOMORROW ABOUT SCHOOL????? On an unrelated note, I am SERIOUSLY starting to suspect that I have PANDAS!!! On second thought, I am going to start this as a separate post b/c I really want to get some feedback about this...

Didn't you just do IVIG? If you try the gluten/casein free diet at this point you won't know what worked! I'm not discouraging you by any means (both of my boys have been on the diet for 1.5 years), but there was so much going on when I started it that I honestly don't know if it is working!! I just keep doing it at the advice of their DAN doctor. (I do think that it helped ds2 overcome early signs of autism, though)

Well, since it only happened once, there is no telling what it is. In my experience, when my ds2 was 15 months and experiencing his first exacerbation after confirmed strep, he had either an eye tic or opsoclonus-myoclonus of the eyes (movements that were very similar to what you are describing - and he would look at me sometimes as if to say "what happened?"). It lasted for 2 months and I also thought seizures. We did a 24 EEG at that time that came back normal. Check out this link. O-M post strep

www.customprobiotics.com D-Lactate Free Formula 1 trillion cfu per day (for each of my 30 and 50 lb. boys) Whenever I increase it, I give activated charcoal 2 hours later (for a few days) to combat the die-off reaction. I'm not sure if anyone answered this yet, but "die-off" or "herxing" with probiotics means that as the probiotics take up space in the gut, the bad yeast and bacteria start to die. As it is dying, it releases toxins that cause symptoms (fatigue, flu or cold-like symptoms, strange behavior or aggitation). When my son is experiencing yeast die off he acts very silly and drunk (slurs words, laughs at stupid things, walks like he's drunk, talks very loud). When he is experiencing bacteria die-off, he acts aggressive and mean.

We had something similar happen last January with my 5yo pandas son. It turned out that he had too many oxalates from a supplement that I was giving him (biocidin, it's a blend of herbs). Oxalates cause small crystals to form in the urine. There are also many foods which contain a lot of oxalates (peanuts, potatoes, can't remember any more than that). So I stopped the biocidin and the "strange feeling" in his penis went away. However, the holding of the groin became a tic that lasted until we did IVIG.

I use activated charcoal and it does miracles in our house when we are fighting clostridia and/or yeast. I actually used it all day today... Yes, has to be given 1.5-2 hours away from all supps/meds or it will absorb them and carry them out of the body.

I was told by our DAN doctor to give 2 cups for my 50 lb child. You have to add more if you bathe 2 children at once...