peglem

Allie weighs right @ 100 lbs. Since @ 60 lbs we have been using 5mg on an "as needed" basis. So when she's having a lot of problems, or we're taking her into a stressful situation, we've been giving her that. Been using 10 mg for blood draws (which still are quite the ordeal, but impossible w/o the valium). When she has dental work, the dentist prescribes 30mg- 20 before the appointment, and keep ten in reserve in case we see it wearing off a little and she needs a booster. When she had T&A surgery, they gave her 15, for starters, then another 15 when that didn't seem to slow her down- they expected it to make her sleepy enough that they could get the IV in...it didn't, but made her muscles sloppy enough that she couldn't fight that hard. The psychiatrist, last week, bumped her "as needed" dose up to 10 mg. What she suggested (based on our sharing previous experiences) for the flight, was to start at 20mg, give 10 more every 2 hours. But she did say to experiment with it before the flight so that we would have a better idea what to expect. And yes, it does calm her, but still, sometimes she gets so much adrenaline that it kinda breaks through, especially at the lower doses.

Risperdal did not help us either, I think it made it worse. Behavioral therapy(ABA) also did not work on my daughter....but oh, boy, did they try. My daughter does not talk, so I don't know if she has thoughts she cannot get rid of. Lamictal has helped, but only a little. (still, even a little makes a difference). I don't remember your son's treatment history...but I sure hope you find something to help him.

Yes, there are "good yeast" that compete with the bad yeast (usually candida). We use S. Boulardii (a good yeast). But, also use bacterial probiotics and yogurt, as well as prescription antifungals. The timing is important. The probiotics/yogurt need to be given long enough after antibiotics that they aren't killed by them (2-3 hours?) And the boulardii needs to be given a few or several hours after antifungals, so its not killed by them. Its a real balancing act.

Most all antibiotics cause yeast issues because it kills bacteria in the intestines, which destroys the natural flora (ecosystem)-the bacteria in the intestines compete with yeast for food. When the bacteria are gone, the yeast proliferate.

So, 1 week out from finishing the rifampin (actually last friday was 1 week out) PANDAS symptoms amped up really bad all weekend. She's still on full dose augmentin. I'm physically and emotionally exhausted. Going back to doc today.

We just discovered this fact when she had a root canal Oct. 1st. The anesthesiologist mentioned that she had a slight fever (b4 surgery even)- but the next day she got very ill-temp. 104. She was on 500mg of zith at the time-MWF dosing, but her doctor said to give it the day before, of, and after. We switched to Keflex the next day...but it was a the whole week before she got better. We took her back to the dentist (the dental surgeon was not her regular dentist) and he discovered she was cutting 4 molars. We've really been having flares here ever since. But, I flashed back to when she was 4 or 5 years old- She really went crazy for a few weeks- her teacher and I just couldn't figure out what was going on- no fever, just raging constantly between crying. Then one morning she woke up with a swollen face- abcess. turns out she had 10 cavities and 2 were abcessed. Remembered other flares that happened around teething issues as well. Strangely enough, since that 5yo issue(10 years ago) and this last incident, she's not had any dental problems at all, no cavities or anything. But still had probs from cutting teeth. My daughter does not have a history of rheumatic fever, but that may be because doctors mistook it for autism (they thought it was all autism back then) so never checked for it those times that she couldn't walk from mysterious joint pain (no sign of bruising, redness, swelling) that resolved on its own. In fact, no strep test was ever run on her until I insisted on one (with her current ped) when she was 10 years old.

Aaaahhhh, okay. I should probably get some sleep, I completely missed that!

Yes, after dental work, and in hindsight--teething. Anything that causes tissue damage in and around her mouth.

I'm not following. How does it expose our kids to full blown PANDAS?

I find myself doing that, too!

Wow, I didn't know this happened to anyone else. Frequently, when my daughter does this, she wants the same thing drawn over and over as well- I must have drawn a couple hundred thousand moons during that phase. Then we had the whale phase, the care bear phase, the faces phase, veggietales, oh, and the snowman phase. Sometimes its drawing on balloons. Sometimes we tried hiding all the markers (my daughter can't use crayons- can't modulate pressure well enough)- and sometimes it worked. I know we're not supposed to give in to this...but ###### ensues for a very long time if we don't. Distracting sometimes works, or repeatedly doing it "wrong" several times.

Was it a PM?- a little box that popped up on your screen? To retrieve that, look on the upper right, just above the google ads- click where it says "0 new messages"

My low-titered child improves w/ abx and declines w/o it.

I get my very supportive pediatrician, who I have gifted with all pertinent research to call the specialists, and include research in his referrals to him. Then I pray, pray,pray...

This is a great suggestion. Unfortunately, I tried this and they didn't even respond. Given the conversation I had with the principal this past week, if she did look at it, it didn't make any difference. She told me she feels manipulated, and bottom line, if my son isn't in school, he won't pass 3rd grade. That said, I still think it's a good idea to try for those who are having difficulties with your school/teachers. Wow, that's some hard nosed administrator you've got there! Will he pass 3rd grade, just for showing up, even if they are unable to teach him?

Thank you, I stand corrected.

They sent me a letter that I got today- they approved 6 visits-just in case.

Both primary (UHC) and secondary insurances have been told repeatedly that this doctor does not take insurance and it will be a reimbursement pay to us. I think as long as they are only reimbursing me as much as they would have to pay in network- it'll probably work. I needed this piece from UHC, before the secondary insurance will look at paying the remainder- so we'll see how it all works out. We did think we would get stuck with the entire bill, and had decided to do it anyway, so we'll deal with whatever happens.

I've been dealing with this for at least 10 years now....and before we knew it was PANDAS, or even knew it was strep related- tried lots and lots of different psych meds. When my daughter was very young- 3-5yo, I swore I'd never try any of "those dangerous psych meds." But, around age 6 (before strep/PANDAS recognition still) things got so bad, that we were seriously looking at out of home placement for her (still chokes me up to think about it), so I decided to try. We burned through the SSRI's pretty quickly- they just didn't change a thing. Then risperdal, which seemed to help at 1st, but she got worse anyway, and increasing dosage made no difference. When we weaned that one, discovered she was BETTER off of it. Right now we still take lamictal, which was originally used for probable seizures, but seemed to help with mood as well. When we discovered the strep (she's a chronic carrier) and later the PANDAS, even though there was overlap between antibiotics and psych meds, I discovered that the antibiotics did more for mood/behavior than any psych med ever did. I did not see any worsening of symptoms, except with risperdal and lithium, but not the SSRIs. I have a theory- just my thinking: PANDAS is caused by antibodies triggering neurotransmitters to be released willy nilly in the basal ganglia. Psych meds are supposed to balance, or stabilize those neurotransmitters. But, what I think is that the antibodies are constantly disrupting stability- so they don't work during exacerbation, then when you come out of exacerbation, the drugs, themselves may cause problems because the "chaos" they are suppose to treat no longer exists. Like I said, just my theory. I'm not aware of any studies that have been done regarding PANDAS kids and psych meds.

I'm VERY blessed to have the secondary insurance from the state, I know that, but not so blessed for my daughter to have the kinds of problems that qualify her for it! I'm eligible for all those therapies through the state insurance, but, frankly, they haven't been too effective and gains from them have been lost to PANDAS. Nowadays, I can't even find a speech therapy provider to work with my daughter! I do use UHC's mental health program for one of my older daughters. It pays a little...but, "ouch" on those copays! When I see the bills- my copay is higher than what the insurance pays.

Well, our doctors, despite living in a major metropolitan area, did not know ANYTHING about PANDAS, so I've been driving all the response via web research, "Saving Sammy" and now forums like this. In other words, I'm ignorant, and our doctors are even MORE so! So, if the ASO titer and DNase are NOT definitive PANDAs testing, what is? This "CAM" I've seen mentioned on this board several times? I'm unfamiliar. There isn't a definitive test at this point, its a clinical diagnosis. The CamK testing is in the study stages right now- the results are encouraging so far, but Dr. Cunningham is in the process of analyzing the data collected so far. I understand how overwhelming all this information can be, we've all been there, and how frustrating it is to always feel like the answers are close, but just out of reach. Be patient with yourself and just try to absorb things a little at a time. Ask a lot of questions- even if its just to make sure you're understanding things right. Reading the info on the pinned thread at the top of the page is very useful....but its a lot of info. you'll have our help and support whenever you need it- even if you just need understanding ears to vent into!

I should add, too, that our experiences with psychiatrists who accept medicaid payments was pretty miserable- they usually didn't stick around long (as medicare providers) so we had a constant switching of doctors-I think medicaid does not pay as well as they can get elsewhere. I'd given up on psychs altogether, when I was shown the door by one who didn't agree with me on what to try next (what is it with that d*#*! risperdal, that they're so sold on it?). Allie's pediatrician found me one that is not a medicaid provider, but is still paid through them. Medicaid mental health services are contracted out to a private company here- which keeps changing as well, but the providers I'm referring to were working for the contracted company actually.

I'm not on medicaid, but my daughter is (as her secondary insurance). I think you're seeing a lot more special needs kids on medicare, because that's what many states use as a DDD insurance. That's why we have it, in addition to our regular family policy. Many do have it as only insurance though. And with special needs kids there is a lot of pressure from schools to get behavior straightened out. I know schools aren't supposed to do that- but there are many subtle ways- and not so subtle- The last school (private special needs- specializes in ABA) actually contracts with a consultant to talk to parents about pharmacological "therapy". So, parents who will get fired if they have to keep missing work to pick up their child from school, etc...finally give in and try. That's what I think is going on.

I don't think so. My daughter has never had elevated (okay, once they were slightly above normal range) titers, but has historically tested positive on the rapid strep tests at least once a month. Honestly there is not that much known about why these titers are high in some and low in others, or how fast they rise and fall....they really are not great indicators of anything, unless you get an elevated titer-and that just indicates that you know for sure there was a past strep infection. Low titers do not rule out past strep infections, current strep infections or anything else. Here is some up to date info on what is known: http://www.latitudes.org/forums/index.php?...st=0#entry29305 These titers are one of the very confusing elements in the whole PANDAS "contoversy." Doctors frequently act like they are a test for PANDAS....they are not.

What blood tests could you use to monitor the effects of the abx? Behaviors are the best guide so far.