Stephanie2

I'm inclined to think that they are a major factor from the start. Both of my boys reacted to several vaccines, worst one being the DTaP which stole my 2yo's speech and started him down the path of autism. We got him back, though (still working on speech). I'm not antivaccine in general, but we are completely done. I even kept my 6yo home the day they did flumist in school b/c I didn't want him to be exposed passively.

I will be talking to our pandas doc soon, but just in case I need to pull the trigger with pred before-hand, what is the usual dose for my son (50 lb, 6yo)? I have given it before but I can't remember. I have some here, but it is for my 2yo. PANDAS seems to be escalating here, despite high dose motrin protocol (it's helping, but lots of break-through symptoms). Both kids have motor tics that escalated today, and some emotional lability that seems to be escalating. And here's the kicker. I had to stop both of their augmentin today! DS6 had a major klebsiella flare...long story. I did increase their OLE to 750mg, 3x/day, which I'm not even sure is safe in my 2yo! Ugh! Anyway, why do I feel like January will be an eventful month

Wilma, when my boys start/increase probiotics they have trouble sleeping. Give it 3-5 days before giving up. This is probably a good sign that you are killing lots of bad stuff (yeast, bacteria, etc.). Don't be surprised if she gets a little aggressive and/or wild for a few days. I am not familiar with that product, but I know that your practitioner prefers to stay away from the probiotics with strep in it. check just in case, though. You could take the above suggestions to start lower (open the capsule, give half with juice, etc.) but if you are already a couple days into it, maybe you should just tough it out instead of dragging it out. Just a thought.

You ask if you should give azith and aug xr...I have no idea All I can say is that if we are all dealing with strep here, augmentin just doesn't seem to be doing it. Personally, I didn't find that azith did much for us back in sept either. I guess if you do both you have a better chance, but then you may get the gut bugs (let's face it, you WILL get the gut bugs). I am just going to go ahead with the naturals for myself (I mean really high doses, GSE, OLE...dropping a bomb here). Back in sept, that is how I ultimately got rid of the strep symptoms. Let me know how it goes. Gee, and strep season is just around the corner I think you have a point that they probably need a month to kick the tics. Maybe I should continue the augmentin for a month...what the heck might as well do all of jan at this point since they get it 3rd week of jan EVERY year!!!!

OK, I'm really starting to doubt myself here. Yes, I do think I have strep throat. But would the kids really be reacting to this if they are on Augmentin and OLE? Wouldn't they be protected from me? Maybe they have some kind of virus. But they don't seem to react like this to viruses. We got influenza "A" last month, no pandas symptoms. Then a cold, no pandas symptoms. I am convinced this is strep, but why are they reacting when they are "covered"? I'm so annoyed

Karen, it sounds like you are still fighting your own strep infection, but how are your boys? It sounded in your post like they are better?

DH and I just talked, here is the plan. I am going to start on high doses of grapefruit seed extract plus high dose olive leaf, 3 times per day. I am going to continue the boys on augmentin and OLE until I know my own strep is gone and I am going to do 3 days of motrin for them. I just don't see the point of taking more augmentin if it did absolutely nothing for me! What is another week going to do? I am in the exact same place as when I started it! And azith was the same way for me last time. I ended up taking high dose GSE for a month to get rid of the last strep infection (but who really knows if I ever really got rid of it?). I have to wonder if strep is becoming a superbug in our house...Ugh! I'll report back...

There is a big concern with safety with this one. Anything else he can use? Don't mean to make things difficult, but you asked

Last night I posted that the boys were 95% after 2 weeks of augmentin and I was wondering if I should continue until 100% and/or start a steroid. Well, after posting that last night ds2 went downhill with emotional lability and leg cramps. Gave ibuprofen. Then he woke up this morning in a clear pandas exacerbation. Gave more ibuprofen to make sure it wasn't a gut bug. He responded very well to ibuprofen. I am now doing 3 days of ibuprofen every 3-4 hours to try to pull him out of this. In the meantime, I'm trying to figure out where the strep is coming from, and I think it is coming from me. Yesterday was my first day off augmentin after having strep with the boys a couple weeks ago. 12 hours later ds6 goes downhill. Today I have a sore throat, achy, mild fever, fatigued. I feel exactly how I felt when I started augmentin. Is there some crazy, resistant, very harsh strain of strep going around or something???!!! What's the deal? So, I started a high dose of grapefruit seed extract. I don't know what else to do! I'm not sure if I believe that azith will get rid of this, and not to mention I have some side effects from the antibiotics (ahem ). What do I do!! This has to be my strep affectiing him, right? I feel like I need to try to come down on my own sore throat before even considering steroids for ds6. The thing that stinks is that ds2 is surely right behind him...sigh

Yes, I have used a steroid taper (20 days) on my 2yo to bring him to 100% before, including a tongue-thrusting tic that he had.

My boys have been on augmentin for over 2 weeks now. A week ago, I added OLE for increased efficacy, which did work. But we are stuck with a few minor, resistent symptoms. Should I continue the high-dose augmentin until 100% remission? Since we seem to be "stuck" should I add a steroid burst/pulse (3 days)? WWYD? Here are the remaining symptoms: DS6: mild throat-clearing tic, mild hyperactivity, very mild and transient fears (like once a day...barely on the radar). DS2: mild tongue-thrust tic I know these symptoms are so minor, but a big strep time is coming up in a couple weeks and I want to go into it with zero symptoms/inflammation...

Here are the doses that I use/have used on my boys with great success (also source naturals, orange flavor, liquid sublingual - got from whole foods): ds6 (50 lbs.): 1.25mg ds2 (30 lbs.): .65mg Good luck!

Please check back once in awhile to let us know you are ok! So sorry...

One more question, Wendy! Are you saying that after aug/flagyl is a good time to test b/c we are breaking cysts and getting a good immune response? Just curious...

I wonder why the increase in symptoms after starting the OLE? Do you think it has something to do with Lyme? Then again, could be underlying viruses. Wendy, I am all set to run the lyme tests, but DH is giving me some resistence due to cost. He thinks I have it and he thinks that we should just test me and if I am positive we just bring the boys straight to a lyme specialist and save the money on the tests. Kind of makes sense, what do you think? Also, I am aware that I could have it and not show up on the test. So, in the end I have a feeling we will eventually look toward lyme treatment either way. 500mg, 3x/day (standardized to 20% oleuropins). They are 30 and 50 lbs. I and other moms have gone higher than that. You should give it a shot with your little one you have nothing to lose!! Did wonders for my 2yo's autistic symptoms as well. I think it was the final piece of the puzzle for him - who would have thought!?

Just wanted to share how our most recent bout with strep has been going. Both of my boys (and myself) were put on Augmentin about 10 days ago. Within 24 hours they were out of the worst of pandas. By day 5 they still had motor tics and mild emotional lability, so I added back the OLE (olive leaf) 500mg, 3x/day. It seems to have done the trick, the emotional lability stopped within 36 hours, and the tics have greatly diminished to basically a subclinical level (although still on the mommy-radar!). They are due to stop the augmentin later this week. I am a little nervous, but if they go downhill I am going to double their OLE... On an unrelated note, they are both on abx for clostridia (ds2 vanco, ds6 flagyl). So everyone is doing very well!!! Can't believe I am saying that and knock on wood, fingers crossed, etc...

I wasn't able to pull up your list in the email you sent. Looking at your list, it seems that you could condense the schedule a bit, it's just dragged out all day long! Please check with Scott before making any of these changes, but couldn't you give the lamictal at the same time as the azith and nystatin at noon? Also, seems like you could condense the last 4 on the list to be given at one time. When you get your labs back I have a feeling you will be adding a lot to this list, so you want to make the process as streamlined as possible. Eventually you want to drop the charcoal and add probiotics (there will be die-off with probiotics, just be ready). As far as your daughter having trouble sleeping and acting "sexual" at night, that sounds a lot like my 6yo when he has yeast. I suspect that you don't have yeast under control quite yet. When the labs come in, your daughter may be switched to diflucan. In the meantime, is there any way that you could give one last charcoal dose closer to bedtime? When my son can't sleep, I will give him some extra melatonin, and if he's not asleep within 20-30 minutes I will give him 2 charcoal.

Scott Smith, Edison, NJ. Specializes in PANDAS: www.drneubrander.com scottsmithpa@gmail.com

Others mentioned concern about charcoal. If used long-term these are issues, but short-term (ie during the die-off phase of yeast) it is used at high doses to get through the day! Personally, I use it 1-2 days at most, but then I am further down this path than you and you may need it more frequently for now until you get lab results and get on top of this gut stuff, which could take a few weeks or more.

yes, the carb cravings are horrendous when my boys have yeast. It is a real need for sweets, not a behavior problem or a tantrum. My son wakes up in the middle of the night to eat. There's really no way to stop it except to treat the yeast.

BTW, what is the reason that you only give one charcoal at night? I always give my boys two 500mg capsules at a time and they are only 30 and 50 lbs. Maybe ask the doc about increasing this? Again, the charcoal is a temporary measure, anyway, but maybe increasing the night time dose will help.

Hi Wilma, yes I agree with kimballot. Was it suggested that you give probiotics? We were told to give www.customprobiotics.com, D-Lactate Free Formula. I give my boys 750 billion cfu's per day. It is hard to fit into the schedule b/c it has to be given away from charcoal and antibiotics. But it is so necessary. After you get on top of the gut issues, then you can drop the charcoal, making it a bit easier to schedule this stuff. Also, can you give one of the nystatin doses with the azithromycin? That way you are attacking the yeast that is being created by the azith right away. Then give the charcoal about 1.5 hours later. Are you waiting for some labs? Will you be getting some OAT results soon? That will help you to identify what is going on in the gut. Regarding your daughter getting worse at night, maybe she is tired and crabby. I know that when my 6yo has an infection, the behaviors are worse at night. Looking at the schedule, I don't know what would make her worse at night, except that maybe the seroquel is wearing off...? Is that a psych med?

Personally, I used to partially give in. If he repeatedly asks me to do/say something I'll go along the first few times then tell him, this is the last time I am going to do this. It did seem to help a little. These days, however, now that we are further along in treatment and at a very good place - if OCD pops up I don't waste my energy trying to fight it. I just go along, then give some ibuprofen, then call the doc, then start an antibiotic and we are good again within a day or so. Not worth fighting if I know that an abx will wipe it out immediately. I have to say, though, that 3 weeks post IVIG I just did whatever I had to do to survive. Not sure if it's worth fighting right now. that depends on your level of exhaustion/trauma at this point. Save your energy for the important battle of getting him well. Just my personal opinion here...

If your child has been on a lot of abx in the past or recently, I would also look into intestinal infections (yeast, bacteria, etc.). A regular ped may not go along with it, but a good place to start is this test by Great Plains: http://www.greatplainslaboratory.com/home/eng/microbial_oat.asp

I think we did in my 2yo over the summer, but I can't really comment on the efficacy b/c there was so much going on at that time and so many other meds started at the same time. We used solumedrol dose pak when my 6yo received his IVIG and I can say that it stopped the ivig side-effects (fever, head ache)in their tracks. Can't speak to the efficacy of pandas, again, b/c he had just received IVIG. He definitley still went backwards for 3 weeks.