Stephanie2

Just for the record, this is maddening and I am about to start crying...that time of month on top of it all... TMI...sorry

Vicky, did you start the z-pak b/c you had strep?

I would. When we went through those days of turning positive whenever course of abx was done- Al would test + @ 3 days after most abx, but w/ zith it took at least 5 days. YES! I don't know what, but there are a lot of bugaboos out there. It could be something else. This is where I am between a rock and a hard place. If I wait a few more days to get cultured, that's 3 more days they will be a train wreck and might CATCH strep from me (ds6 is due to stop his augmentin today - NOT). But if I just start some antibiotics right now, then I can't get cultured and I will never really know if I am carrying strep! My usual knee-jerk reaction is to start myslef on antibiotics so the boys will calm down, but then I never get the answers I am looking for, ie have we been passing strep back and forth since sept? WWYD??? I can't even think today!!They put dh and i over the edge this morning...seriously...

I'm talking about me here. Back in Sept when ds2 tested pos for strep, I also had a sore throat and took abx which cleared the sore throat. I never got tested...just assumed strep. Well, ever since sept whenever I stop antibiotics (tried azith, augmentin, grapefruit seed extract and olive leaf) I get the sore thoat back within 2 days. I guess the obvious answer is - strep. But is there anything else this could be? Next question. My last dose of azith was Friday morning (this is monday morning), it's obviously still in my system but my throat is getting sore. Is now a good time to get a culture? Should I wait a few days for more azith to clear out? By the way, as of this morning the boys were a pandas nightmare. But they are on augmentin. Could they still be reacting to me?

just wondering if this is an herb or a homeopathic remedy?

Sorry, Peg. I'm starting to wonder if Jan should be an official high dose antibiotic month for everyone. We get it every january hugs... Stephanie

Dedee, I would tell you to have your husband read this thread so you can say, "see?", but unfortunately he will most likely say, "those women are crazy, don't read that stuff!". I know the pandas-dad too well. Took me 6 months to get mine on board with our first son, and then when our second son was diagnosed (by me - not very persuasive) it took another 6 months to get him on board with that one. Just another battle. What ultimately clued him in was when they both fell apart out of the blue, no signs of illness. I looked at him and said, "I am taking ds6 to the doctor today for a strep culture. If it is positive, will you start supporting me?". Sure enough it was positive and he got to witness the miracle of azith. After that, anytime someone goes downhill, he is the first one looking for antibiotics! LOL!

Like everyone else is saying here, it so depends on the situation you and your child are in. I tried pulling both of my boys out last year for 2 months to see if the decreased exposure would prevent another relapse. Wouldn't you know it, 4 weeks into being home they both got strep (and I was a nazi mommy following them around with antibacterial gel whenever we would leave the house, which was not often). Not to mention, when the DID get strep and fell apart, there was no break for mommy!!! But that was just my experience and my bad luck I suppose. I also have the issue of both of my boys have multiple chronic conditions that requires all of my time to manage (docs, meds, supps, pharmacies, research all day long) and I would never be able to manage it all without the time away from the boys. Like I said, depends on the situation. You also mentioned that your husband is a stay-at-home-dad. It will only work so long as your husband has not lost his mind! When/if that happens it will be "back to school"! Hopefully he is stronger than dh and I! With all that said, I think every family should try it when nothing else has worked. You never know until you try.

the yeast marker if barely out of range, not to mention if you did not stop apples, grapes, etc. then that could explain the elevation to begin with. Looks very good. You are lucky, even with 750 bill cfu's per day my boys' yeast/bacteria are almost always out of range.

My boys are GF, mostly CF and also Feingold (plus they take epsom salt baths to help eliminate that which falls through the cracks with feingold). Here is the problem. When I started the diet, unbeknownsed (sp?) to me, ds4-at-the-time had strep/pandas. So, i was never able to get an accurate "read" as far as what the diet did for him, but I persevered b/c the doc told me to. I then put my ds15months-at-the-time on gfcf due to early signs of autism. Within a couple weeks he started engaging with the family!! So, for him, outside of pandas, it has been a great intervention. But what it has done for pandas I have no idea. I keep them on it b/c 2 docs have told me to due to the autism features. I know that has absolutely not helped you decided LOL! I will say this, my chiropractor firmly believes that anyone with autoimmune disease needs to be gluten free.

Yes, I think the problem is that with the keto and all the other meds he is taking, the actual "dosage" was driven higher than intended due to lack of excretion/metabolism of the pred. with all this said, his pandas symptoms are much better

yes! I think ultimately we are the fortunate ones who's children are able to persevere through life and function even when they are at their worst. I like to think that this predicts that my boys will be able to make it through life in the end. However, I think in the end we "pay" for it with the big eruption that occurs the minute they walk through the door/get in the car. It is horrifying to experience day in and day out. Even though I need the break, sometimes I think it would be easier to homeschool in order to decrease the stress so there is not that big meltdown at the end of the day (which just exhausts me). This is what both of my boys do. In fact, in the past week my 2yo has had what I believe to be strep. He went to grandma/grandpas on two of those days and he was "perfectly fine and happy" all day long until he got dropped off at home. The SECOND he came through the door with the grandparents he started screaming bloody murder for mommy and proceeded to have a 1.5 hour meltdown. I have explained time and time again to my inlaws that this is typical behavior with pandas, to fall apart only with mommy/daddy. They still to this day do not believe that is possible and that I have spoiled my boys rotten. This is not a battle I will win and have come to realize that to the outside world we look like failures for not having control over our children when they are perfectly behaved everywhere else Yes there are times I want the kid to lose it at my in-laws to they don't have to act so self-righteous, but the bottom line is that then he would not be welcome at their house!!!

When we have done 3-5 day bursts he has not reacted this way (nothing beyond the usual depression/irritability). It was about day 5 or 6 that the psychosis set in with this taper (as typically seen in the research I did last night). Yes, maybe the keto was the factor that put him over the edge, on top of the fact that he has never been on steroids for this duration. So, some would say that I am probably safe to do a short burst again in the future, but the gains never seem to have stuck in the past. Also, what scares me the most is that some people take longer to come out of the psychosis (weeks/months) and a small percentage never fully recover (although I would be willing to bet that is b/c maybe they developed a gut infection that went undiagnosed and contributed to the ongoing mental health issues). All I know is that we have been dealing with pandas/autism in 2 boys for almost 5 years now and nothing has ever come this close to "breaking" dh and I as this experience. Beyond words. Scary. I know this will scare some people, and please don't let it, just add it to your mental "files" so that if you ever come across this experience you know what you are dealing with. Also, in the literature they mention that previous mental health conditions do not increase the likelihood of this occuring (as I was thinking that it had).

ironically, i don't have much experience using them for pandas (although I was able to calm my 2yo once with tenex during acute exacerbation). I use tenex for hyperactivity as needed (also for rages, takes the edge off) and I used risperdal for steroid side-effects. 5htp (natural antidepressant/antianxiety) is the only thing that has really helped pandas here.

psych meds. this from a mom who took 5.5 years of ###### to break down and try them as needed. what a relief. it is a sad day when you give your child psych meds, but it would be a sadder day when you decide to check out of the game cuz you can't take anymore, KWIM? With that said, I am so sorry and I am right there with you as my ds2 has been screaming bloody murder for 3 nights. I have only used tenex on him once or twice, tonight was almost "thrice" (in the words of conan o'brian LOL). Lately I have had to resort to risperdal for ds6, but that's b/c of medication side-effects. Something that really helps OCD/emotional lability is 5HTP. you have to get a reputable brand. My 50 lb. 6yo gets 75mg at night as needed. Seems to work right away and help sleep. oh, and more importantly, dh and I take 200mg 5htp bid to get through this, also very helpful.

psych meds. this from a mom who took 5.5 years of ###### to break down and try them as needed. what a relief. it is a sad day when you give your child psych meds, but it would be a sadder day when you decide to check out of the game cuz you can't take anymore, KWIM? With that said, I am so sorry and I am right there with you as my ds2 has been screaming bloody murder for 3 nights. I have only used tenex on him once or twice, tonight was almost "thrice" (in the words of conan o'brian LOL).

Many of you have been reading my frantic posts...I think these links explain what has been happening to ds6 lately. Looks like I may need to line up IVIG for next episode. I've seen a lot with ds6 in his little life, but nothing like this. Risperdal has really helped as we taper... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2533831/ http://www.webmd.com/drugs/drug-6007-prednisone+oral.aspx?drugid=6007&drugname=prednisone+oral&dmid=1503&dmtitle=SELECTED%20CORTICOSTEROIDS/ITRACONAZOLE;%20KETOCONAZOLE&intrtype=DRUG&pagenumber=9 Now if I can only find a link to explain why ds2 threw three items at my head today...sigh.

Well, the flu mist is probably "out of her system" like you said, but the inflammation that it caused may be permanent at this point unless you do something to bring it down. You could start with 3 days of motrin, regular dose every 3 hours while awake. If that doesn't help (and honestly, it may not since it has been going on for a little while), then you could consider a steroid taper or a steroid burst. There may not be an infection anymore, but there may be residual inflammation. Then again, there could be strep somewhere in her body that will not show up on culture. Sorry you are going through this twice. I have 2 pandas boys. It's double trouble if you ask me!

I think the point was to give the gut a break in between doses, less risk of clostria, etc.

After reading this thread, I would think that most of us would not want to use immunosupressants as a permanent fix for pandas. But I wonder if maybe they should be used as a "tool" in crisis moments, ie while lining up IVIG or when the family is close to "cracking" (which can be a dangerous situatioin in and of itself, we have been there multiple times, ya know when everything starts to spiral and you can't seem to pull anyone in the family together? or is that just us)

Can you describe the steroid induced psychosis? I think that's what we have been dealing with here, so much so that I have had to start risperdal for the first time. Taper ends in 6 days, had to speed up the taper due to psychosis.

250 mg, twice a week. Has anyone done this prophylactic protocol with success? The doc gave me the option to increase the dose, should I?

Is it very far out of range? Sometimes a mild elevation is nothing to get too concerned about, although best to strive for normal range. Did it come down at all?

my 2yo had elevated LFT back in July. We gave Milk Thistle and the repeat labs came back normal. It may have had to do with the use of grapefruit seed extract and/or diflucan, amongst all the other stuff he takes. What did the doc say about it?

We use a B-Complex cream from a compounding pharmacy, I believe ours also contains B-12, but either way our kids get Methyl B12 injections. Not necessarily for the purposes of low iron, more as a biomed treatment for autism. We get the cream from Lee Silsby pharmacy. You could call them to ask about docs that would prescribe it.