peglem

I'd do it that way if I couldn't find a doc to prescribe it!

I just googled "purchase augmentin xr" and a bunch of different places came up.

This is what I'm anticipating...at this point, everything has turned OCD...I'm not sure my daughter has the neurological connections to just enjoy something for the simple pleasure it brings. We've not done IVIG yet, (soon)...I keep trying to picture how things will change. Its been so long- so much a part of who she is, I just don't know who she'll be w/o OCD.

Yes! We see this, too when the right abx at the right strength is given- we see some blips but the intensity goes way down.

edited per request

Thanks so much for updating us! What wonderful news!

Is the blood test able to indicate whether the child has ever had strep at any time in their lives, even if the child tests negative or is asymptomatic? No, because its very unusual for people to have zero titers- pretty much everyone is frequently exposed to strep- its a very common pathogen.

The titers tests, if they come back elevated only indicate that there was a recent strep infection- w/in the last 6 or so months. If titers come back low, it doesn't mean anything, does not rule out recent or current infection...it just means that the immune system has not been generating high numbers of those titers. I know its frustrating that there is not an easy way to get the information you want...there just isn't. These tests can confirm, but not rule out. My daughter had numerous positive rapid strep tests, but no elevated titers...and that is the case with several others on this board. Unfortunately when this happens, doctors frequently rule out PANDAS based on the low titers...

Hmm, not exactly. The groups are divided into those with OCD only, those with OCD and tics and those presenting with only tics. In addition, often the tics are vocal (although certainly many have motor tics or motion abnormalties too). There certainly are specific blood tests but they only add weight to the PANDAS or PITAND diagnosis, they aren't in and of themselves conclusive. Again, I refer you to the flow chart and the other documents as they are pretty explicit on the tests and the confidence intervals. I have looked at your flow chart, taking it box by box and trying to decipher it, as it is a wealth of information (thank you truly, I have been researching and learning so much from all your links and information). So, starting with the 1st box, after finding out what GHBAS is, it looks likes the first step is to have the family members throat cultured for Strep. Am I reading this right? My reasoning for wanting to go directly to the the blood test (the one which will show a titer number) is because I don't think any of us will test positive for strep because we are not displaying any symptoms. Neither one of my kids have ever had strep throat to my knowledge. I am worried that tests would come back negative, and paranoid that all offers of further testing would stop there. My sons doctor asked me at his last appointment if I wanted him to prescribe a test that shows the titer, I declined at that moment because I wasn't knowledgeable enough and I wanted to go back to him educated on what he was offering. (He offered this because I asked him about PANDAS and the possibility of that diagnosis, as I was at the VERY BEGINNING of learning of this and trying to connect some dots.) I had read that even the titers show up low and docs may discard the possible PANDAS diagnosis. Am I reading all this right, is my plan to start with the blood test a good one, along with getting everyone throat cultured for strep? Unfortunately, Buster's chart doesn't show how to manage doctors as well! You might want to get the strep testing done at a clinic or urgent care facility and then decide whether to share that info with your doctor. It is not so uncommon for people to culture positive for strep w/o displaying any symptoms. It is also common for those who are positive on strep culture to not get a rise in titers (ASO, AntiDnase). If you get a positive swab, its frequently better to forgo titers testing...you already have confirmation of strep, and the titers testing can only confirm (or affirm) a recent infection (but a low titer does not rule that out). Most doctors do not know how to interpret the titers testing.

I think there should be an overall grouping of PIAND (Post Infectious Autoimmune Neuropsychiatric Disorder) with sub-categories that delineate the triggering infections.

Could you elaborate?

My daughter did not even get a short respite from strep when she got her tonsils out....but she hasn't had inflamed tonsils since then!

oops, responded on wrong thread!

Yes! I've just always attributed that to a little post adrenaline/cortisol release, almost like an IBS. He, otherwise, has very healthy bowel habits. BM's do not normally produce anxiety in him. Is that always an issue for your daughter? How old is she? Thanks! My daughter is 15. No, this is not always an issue for her- just that the post ragey BMs are extraordinarily large. It never occurred to me that the adrenaline/cortisol could be causing the BM. I always thought it was the physical discomfort of intestinal pressure triggering the episode...hmmm, chicken or the egg?

Does he have a BM afterwards? Sorry, there's no delicate way to ask that! Sometimes my daughter seems to break down for no reason at all- then about 1/2 hour later she'll produce a motherlode, and then it all makes sense!

Are you giving his meds at the same time everyday? Are there any constants near that time- like a train whistle or some other thing in the environment that could trigger something?

Well, we're not sure about the seizures- did an 8 day video EEG (that was a lot of fun ) and though there was abnormal activity, no clear seizure patterns were discovered. However, the things we thought might be seizures (gaping mouth, with "uh, uh,uh" and fluttering eyelids) did go away on lamictal. But this happened during the post T&A PANDAS exacerbation...so don't know if that would still be happening outside of exacerbation, nor do we really know if the improvements we have seen with any med is the med or improvement in the PANDAS. I guess what I'm getting at is when you are in recovery...say from IVIG, how will you be able to tell if some of those residual (or even new) things are caused by a med that is no longer needed or still left over from PANDAS? Or, what is the possibility that the neurotransmitter modulator (psych med) could be interfering with recovery? I'll have to talk to her psychiatrist about this, I guess...she probably doesn't have an answer, but may have some ideas of what we can try.

Yes, my daughter's titers have never tested high, and she has many, many positive swabs. Thanks! I thought I read it somewhere and then went back and re-read it - It is helpful to actually hear it from someone with the 'experience of it' .... somehow in my mind it makes it more real.... I think this illness is making me neurotic! I think there are several non-risers here.

Yes, my daughter's titers have never tested high, and she has many, many positive swabs.

Well, could it be the 1st ASO number she gave you (200) was just the range #...like <200 is normal, and the 88 is your child's actual titer level?

I don't know. I think if I could go back and put her on high dose Zith prior to and a long time after, maybe it would have gone smoother. She was on omnicef for 21 days prior (but I don't know how high a dose), then a regular course of amoxicillan after. The real problem was that we were so sure that the T & A took care of the strep, and nobody wanted to swab a healing throat (ouch!). So when she started going down hill...we didn't think it could be strep causing it. The only PANDAS info we had back then was the NIMH site. I think we hadn't done the T & A, I'd still be wondering if we should have, and thinking that I should have given my daughter that chance of getting better. I made the best decision I could, based on the information I had, which is pretty much all any of us can do.

I haven't seen this discussed here, and Allie is not close to recovery (just close to more aggressive treatment), but I'd like to get this figured out anyway. The only med she is on is Lamictal (originally for possible seizures, kept on for mood stabilization). It helps just a little. (we think it does anyway). But, I'm thinking the problem it was prescribed for is a PANDAS symptom (emotional lability), so how would one know, when recovering from PANDAS, what effect that med is now having or when its time to ween. If treatment removes the symptom-how do you know whether some behavior your seeing is a side effect of the medication in response to a more normalized system? I feel like I'm not asking this right...Okay. if you gave the med to a typical kid, you'd expect it to mess things up, not straighten them out, so if a child already on the med begins to become more typical, is the med a problem then?

Advil (ibuprofen) is an Nsaid= non-steroidal anti-inflammatory drug (is the "d" for drug?), so I'm guessing its the inflammation that is reduced.

Good point, Faith! My daughter had hers done just to try to eradicate the strep. It didn't, and because we didn't quite know what we were dealing with and only gave one follow up course of amoxicillan (the ENT who did it did not even believe PANDAS was possible), we ended up with the worst exacerbation ever!

Thank you all of you! My son is about 60 pounds. I will bring this information to my doctor. Can anyone tell me why you would want to try the combination of the 2? I saw that someone is doing this. Does the Augmentin fight one type while the Azith fights the other?Sorry, so new to this all. CZL and I have already been emailing. Sounds like he/she is running up against finding a doctor who will try, but I have found one willing and able. Phew. On using both- my understanding only: If you have intracellular strep (or think you might)- zith is able to penetrate into the cells to get at the strep there, but the way it works is just to slow down the strep so it can't reproduce (doesn't really kill it). Augmentin at high enough doses is bacteriacidal, but only gets extracellular strep. So get the bacteria out of the cells w/ zith and then kill them w/ augmentin.