Stephanie2

Thanks Mom Love! Thanks for admitting that you don't know how to open a bottle of wine!! LOL! Why did I feel stupid admitting that? Maybe I should try the old-fashioned one. I seem to make a mess of the cork every time, then I am drinking cork pieces!! Thanks for the nice comments. I am finding myself in a position of support through this forum and through pandas resource network, and on days like this I wonder - who is supporting who here!!?

If you really want to take a look at the gut I recommend an OAT test and maybe a stool analysis. We just did this, here is what we found: yeast, clostridia, klebsiella, even strep in the gut. Just finished treating clostridia with flagyl, now attacking klebsiella with septra. Giving ketoconozole all along for yeast. This has made a night and day difference in terms of aggression/defiance, etc. PM me if you need a recommendation for a doctor who can manage strep/bacteria/yeast... We use OLE for strep and find it is very effective...you should also get a really good probiotic on board. we use www.customprobiotics.com, d-lactate free formula.

After 2 days of rages and meltdowns (from both kids, but mostly ds6), my brain is fried and I am in need of some wine but I don't know how to open a darn wine bottle!! LOL! I am serious. And strangely enough, the one bottle of wine we have has no label on it (????) so if I were to drink it I would have not a clue what it is. I finally got the kids under control but now I am just collapsing on the couch and this is what I see as I look around my house: refridgerator and freezer are wide open with contents on the kitchen floor, there is a fort in the living room with hot dogs and ketchup inside smeared around, the groceries I brought home are out of their bags and all over the floor, there is pee in the little potty I keep in the kitchen (could be worse there!), there are shoes and clothes all over the house - on the backs of chairs, the floor, every surface pretty much, there are open bags and boxes of snacks in every room, none of this week's homework is done but is spread all over the table, there are bins of supplements stacked in the kitchen waiting to be taken by the kids, ds2 is running around the house with just a t-shirt on (not potty trained) and in desperate need of a bath, plus he is limping b/c he has a leg cramp, ds6 is walking in circles in the living room eating gluten free crackers, there are containers of water and syringes and puddles of water on the kitchen floor, did I mention the playroom? I won't even go there. As I am typing this, DH just walked in and looked around and I just started cracking up!! Am I losing it?? But here's the real vent. Luckily I have a good doctor for the kids who told me about the klebsiella about an hour before the classic klebsiella rages began, so we already had the antibiotics on the way. OK, crisis only lasted a few hours, dodged a bullet. But what the heck, he also showed strep in his stool analysis. Yesterday, I tried to reduce the kids' olive leaf once again (4th or 5th time trying this) and they both had pandas today! DS2 wanted to be held and was obsessive over everything this morning. DS6, on top of coming down off the klebsiella MANIA was having meltdowns all afternoon. We took a walk (what was I thinking) and his bike kept breaking, I kept putting the chain back on and finally it completely jammed up. Then DS2 (a mile away from the house) decided that he did not want to walk anymore. Luckily I thought ahead to take the wagon which is where I put the bike, but then I had to balance my 2yo in the wagon and hope that the bike didn't slide onto him! The whole while DS6 is having massive meltdowns. I just wanted to cry!! I finally just left the wagon and the bike, picked up my 2yo and told ds6 "let's go" and we walked home and went back for the bike. UGGHHH!!! Back to my main vent!! I went off lexapro a few weeks ago and now I am having some kind of PTSD or mid-life crisis! I am not depressed or anxious, in fact I think I feel better off the med - more alive, but it's like I woke up from a dream into reality and I am looking around at what has become of my life and I'm not happy and I am making rapid and drastic changes. Within 3 days I told dh to go get a vasectomy, I told him I was putting the kids in daycare and aftercare and I am getting back on a career path of some sort (this is after being home for 6.5 years and not planning to go back to work anytime soon). I also took the kids off their gluten free diet, cut their supplements in half (that part didn't last long, they went downhill) and just plain don't want to deal with all this anymore! I feel like I am becoming someone I don't recognize, but I think it's just that I have had my wings clipped for so long by lexapro and my kids that I am like a caged bird wanting to get out!!!! At the same time, I look at my 2yo who was the most severely affected by pandas/autism and I see how far he has come (darn close to perfect except for a speech delay and some infections I have to manage) and I think, how can I put this kid in daycare, he is just a joy to be around and he deserves to be with his mommy! But at the same time I think that I just can't give him what he needs b/c I am just over the stay-at-home-and-take-care-of-ocd/tourettes/raging-children-mommy thing! Talk about some guilt and heartbreak!! Done!

How about 50,000 pandas kids receiving a proper diagnoses each week until all are diagnosed?? Yay for awareness and moving forward!!

insomnia usually happens in my boys when they have yeast, which is caused by the use of antibiotics without the use of probiotics and/or antifungals. my oldest usually gets night terrors with strep, so maybe you have both going on? Some strep strains are resistent to azith.

Here is how I determine if my kids are under an autoimmune attack or a pathogen-toxin attack (although this may not work in the case of strep unless it is purely intestinal strep). When they start going downhill, I give activated charcoal. If they completely normalize within 30 minutes, then I know that there is a pathogen in the gut putting out toxins, the charcoal absorbs it and the behavior completely stops for 2 hours. This does not cure the problem, just gives temporary relief and helps me to dx what is going on so that I have some feedback for the DAN doc. If charcoal does not do the trick I then give ibuprofen. If that normalizes the behaviors, then I know it is an autoimmune/inflammatory attack on the basal ganglia. As an interesting but unrelated note, in my 2yo I can always tell if the basal ganglia is swelling b/c it exacerbates his chiari malformation (seems to be the ONLY thing that causes chiari to flare!). The second his pandas symptoms start, he grabs the back of his head b/c his chiari hurts!) I also suggest an OAT test b/c clostridia will also increase inflammation in some kids, an on top of that it will put out the toxins. So double whammy. Nothing brings down my 6yo like gut bacteria, not even strep. Personally, I don't think that IVIG would help this. And, yes in our case, yeast causes verbal tics, where strep only causes motor tics. We also walk a fine line there. For us it is a daily balancing act. Yesterday I missed his yeast med and this morning I paid dearly! And if I miss his OLE, we pay with pandas symptoms! No room for error, here!

My son used to get stomach aches with strep/pandas. I would give him gripe water and it seemed to do the trick. If you are looking for a good probiotic, we use www.customprobiotics.com (D-Lactate Free Formula). If you end up with Scott, that is likely the brand that he will suggest. Very expensive but the bottle lasts a long time and it is effective. Don't forget to give away from the antibiotics.

don't forget about Scott Smith in Edison, NJ. He is on the PANDAS Resource Network medical advisory board. PM me for contact info. He has done wonders for my kids.

Both of my boys have had clostridia (not sure which strain), in fact one is being treated with flagyl right now. If your son gets it, it doesn't necessarily mean he has to come off antibiotics, but he may need to change or add one. For my boys, they get ragey, aggressive, very unhappy and noncompliant. It is almost worse than pandas. but not all children would react that way. One of my boys gets diarrhea with clostridia (and very very stinky BMs) and one does not, just the associated behaviors.

I had the test done on my 2yo when I was suspecting seizure activity. It came back negative. Our DAN practitioner was the one who ordered it. If you want you can PM me for his name/contact info, maybe he can do a phone consult with you and interpret over the phone.

We are not doing tonsillectomy with our pandas boys b/c we have been able to get on top of strep with antibiotics and anti-inflammatories. If, however, we were not able to bring titers down then I would consider it.

Sent you a PM...

My boys each take 750 billion/day. www.customprobiotics.com, "D-Lactate Free Formula", it does not contain any dairy or strep. The more you can populate the gut with good bacteria, the less of a chance for yeast and bad bacteria to move in (especially with our chronic antibiotic kids)

Wpw, kimballot, I didn't know you were going through this! I'm sorry to hear! I have a couple thoughts. First, it does sound like it is safe to keep going with diflucan, however, in our experience my boys both developed "resistance" or "tolerance" with this one and we had to move on to ketoconozole as our antifungal. Is there a possibility you are seeing yeast? Or could the yeast be causing immune system to plummet, and autoimmunity to increase? Our DAN doc has eluded to this in the past. Also, I worry about the IgA levels b/c I have heard that you cannot have IVIG done under those circumstances...yikes! Last, any chance your son has developed an intestinal infection from the chronic azith use? As you know this is why my boys can no longer take azith, ds6 developed klebsiella, we got that under control, then tried azith again and then he developed clostridia! Both of these infections caused problems that were worse than pandas. Same type of thing happened with DS2. Maybe you can get in touch with Scott and have an OAT test done to see what is going on in the gut (he is up your way now). As far as the IGg stuff, I have nothing to offer...I hope you are able to get to the bottom of this!

I agree with the last post. My integrative medicine doc got me in such good shape that I was able to get off of lexapro and I am managing stress better OFF than ON to my surprise. Not to mention I have 2 pandas boys, both with autism. With that said, it also takes time to build up the strength to your personal circumstances. I think you will get there. BTW, you asked me for some info at the meeting - I am going to PM it to you now. Please call me if you need to talk. BTDT SOOOO many times, when I didn't think I would survive another day (sure I'll go back there again...!).

I think I've mentioned this before, but I have seen both of my boys have die-off/herx symptoms on augmentin. Always takes 3-4 days to settle down. turns out they both had clostridia infections at that time and the augmentin was killing clostridia. We now use flagyl for clostridia.

Well I can tell you that when I started my oldest son on GFCF a couple years ago, I did see inflammation go down (and I did not know it at the time, but he had an ACTIVE strep infection, still noticed a difference in behaviors!). You could take the gluten free diet one step further and look into the Specific Carbohydrate Diet. Many ppl with celiac actually do better on this diet (it is also a gluten free diet, but other grains-free too). This is a very anti inflammatory diet and it helps to heal the leaky gut over time. http://www.pecanbread.com/ This diet is radical and extreme and requires fanatical compliance to really heal the gut. I have researched it, studied it but not quite ready to take the leap. With my boys' gut issues, I know I need to do it eventually.

Thanks for the feedback! I really do believe in what they do. This chiro told me about 8 years ago to take some probiotics and stop dairy for my allergies. I did not believe him and did not follow through. Then after putting my boys through the DAN protocol and stopping dairy, starting probiotics, etc. and seeing their asthma/allergies/chronic infections stop in it's tracks, I finally decided to try it myself. Needless to say, my own asthma/allergies/chronic sinus infections are a thing of the past. Also, last week when he adjusted me I had some lingering flu symptoms I could not shake. He did an adjustment and some acupuncture and I walked out of there flu free, and the symptoms have not come back at all. A couple days ago he put me through some muscle testing to see what was holding me back in terms of pain in my back from an injury. He came up with some chinese herbs. He had me take them right there, then he adjusted me and I finally walked out of there pain free! I have been taking the herbs ever since. I have a very hard time believing in the whole muscle testing thing, I just can't wrap my mind around this! But after seeing some amazing things with my kids I don't totally discount any alternative medicine anymore. Oh, he taught me how to do muscle testing on my sons to see what supps/meds are actually helping and which ones may be holding them back. I haven't done it yet, but DH and I are going to do some "single-blinded" testing with all the supps (meaning I dont' know what he is holding to my son and I am the one who tests the response in the muscle). See if it matches up to what I know (meaning I know there are certain supps/meds that he cannot live without). I will have to come back here and report. BTW, my kids are not suffering from pandas symptoms at the moment. I just want to see if chiropractic would allow us to dump some of the meds/supps that they take - really FIX the immune imbalance, or add to the maintanence at least. Anyone do any muscle testing? I think they can "detect" microbes that way too (strep, etc.). I know MichaelTampa does it, had an extensive conversation with him about this recently. Would love to know more opinions about this.

Been spending lots of time with my chiropractor (sigh...) and he wants to get his hands on my pandas boys to help shift their immune systems. Wondering if anyone has gotten benefit from this.

Unfortunately phsychiatry will supress/disregard this info as long as they can, otherwise they will be out of a job and the pharm companies will suffer (better to treat than to cure)... Sorry for the cynacism...I've just seen too much (having been a pharm sales rep...don't throw tomatoes at the screen please)

You should check with some compounding pharmacies, we were able to get vancomycin at a fraction of the cost (walgreen $1000, compounded $45!). Maybe valtrex would be the same. Here are a couple we have used: http://www.posthastepharmacy.net/retailer/store_templates/shell_id_1.asp?storeID=04CB636EFF3F43AEB8BCBB76A0024E3F http://www.coastalcompounding.com/

I think we know each other from the other forum...? I don't have older kids but I am always shocked when I read something that is so earily similar to some of the thoughts I have had. I have told my husband several times over the last couple years that sometimes I just want to get in my car and drive away and not come back for a month. And guess what, one day over the summer I did just that (except i just went to my mom's, she and I got in a fight about whether or not my kids had pandas , and I was back home within 24 hours...sigh!). So unlike me to just up and walk out of the house, leave the kids with DH and just go, but I think a person can only take so much sometimes! I wanted to comment on what the other "mum" said, about getting to a good doc yourself. My levels, too, were way out of whack, vit d, mag, dhea, thyroid, blood sugar. this was after about 5 years of neglecting my self. I am feeling SOO MUCH better physically, in fact I just got off my antidepressant and am maintaining on 5HTP, and we too are still in crisis (gut stuff). I started doing yoga, too. My point to all this is that if you don't do these things you WILL crash. That's what it took for me to start making this a priority. I see that you did the DAN protocol, just wondering if you have tried LDN? That is huge for my boys for pandas. Also, when DS6 recently had strep I tried some 5HTP to take off the edge and it did wonders for his moodiness. Just some random thoughts...hope it doesnt' go against what you needed at the moment!

I'm sorry I don't have any info on clostridia causing tics, just some feedback from 2 different DAN practitioners. clostridia is very neurotoxic and it also can contribute to the inflammation of pandas. It causes increased tics in one of my boys but not the other (more ragey stuff in the other). I don't think all abx would have the same effect on clostridia. I always found the augmentin helps keep it in check, but does not altogether kill it. azith will most def make worse. flagyl, vancomycin, etc will kill clostridia. you would need to have an OAT test done: http://www.greatplainslaboratory.com/home/eng/microbial_oat.asp

The only times we had herxing with augmentin is when we had klebsiella or clostridia of the gut. Rages increased but stopped by day 4 or 5. I would consider a stool analysis or OAT test: http://www.greatplainslaboratory.com/home/eng/microbial_oat.asp By the way, augmentin is what finally got rid of the klebsiella for good (those were some severe hands-on rages that lasted on and off for 6 months). If clostridia, other abx would work better, flagyl, vancomycin... May be some other gut bacteria going on too, but I don't have experience with any others...yet I also wonder if it is making yeast worse? My boys do not get aggressive or rage with yeast but I think some kids do. As far as lyme, I have no experience there... Let us know what happens!

bumping this up...last call!