peglem

Oh, your yearly deductible will run a year from policy start- so you may have another 6 months or so. When I was teaching we went from September through August.

Do you have an out-of-pocket maximum? Course, its the end of the year, then you'd have to pay again next year. But, if you hold off till January, meet the out of pocket maximum, then the rest should be covered at 100%. At least that's how our policy works.

Just a guess- your body is fighting something?

No speculating here. I'd get her to the doc asap.

We had tentatively planned DL for this week, decided Monday it wouldn't work out to leave on Tuesday.

Maybe I misunderstood, but I got the feeling that he's hanging out with some "rough" kids because he didn't develop normal friendships because his PANDAS behaviors made him kinda hard to be around and he's at the age where the HS clics have already been formed, leaving him on the outside looking in. And w/ his history of not fitting in, his mom is afraid that he may be easily swayed by peer pressure to do some unhealthy, risky things, rather than take the chance that they'll reject him.

I hate to tell you, My 3 oldest are all adults now- and they all went through crap in the late teens that scared me like crazy. Keep the lines of communication open and sometimes a good therapist can help them get through some of the issues, especially self esteem stuff.

Peglem....so awesome.... I've only read your posts on this thread!!!! Do you think it was because you did it a week early!??!?!?!. And you are indeed a very good MOM!!! I don't know, but I'm going to do the next one at 4 weeks again- and decide when I see how that goes, if I should ask the immuno to up the frequency. Frankly, though I know she needs them, those IVIGs are getting a bit tiresome. If she holds steady doing them every 4 weeks, that's often enough for my tastes.

Thanks for sharing your story. So so nice to hear about your daughter's remission (recovery?)!

Thanks, guys! You know how this disorder makes you feel like you're not a very good mom sometimes- I mean you can't even do most of the regular mom thing and you don't feel like you can make it all right like a mom is supposed to...well, thanks for reminding me that I really am a good mom! BTW- today has been great, too! PTL!!!

Don't tell me anything- Our tv is down until the living room gets finished and I plan on getting caught up then!

You know you're a PANDAS parent when -You hope the lab test comes back showing immune deficiency so you can get IVIG. -Every activity has a contingency plan for if your kid can't handle it.

Here's a thread w/ lots of opinions about that: http://www.latitudes.org/forums/index.php?showtopic=8443&st=0&p=69735&hl=beth%20maloney&fromsearch=1entry69735 I think most people agreed that the information on this forum is better, more accurate, and much cheaper!

But urinary frequency is also a symptom of UTI, so you may want to rule that out.

Well, if it took 6 months to see improvement, I'd say its not the PennVK that's helping! From what I've heard on here, Dr.T is wonderful!

Haven't seen Dr. T, but was wondering if PennVK helps with the PANDAS?

Well, most people, including doctors have never heard of PANDAS and it sounds kind of "out there" since strep is such a common infection. I remember before knowing about PANDAS, everybody, myself included, having theories about why a new behavior had come about...stress is a very common one. And you know- life always presents w/ so many changes and adjustments, there is always something happening that you can blame it on. I hope you are able to influence your friend and get this girl some appropriate treatment!

You know you're a PANDAS parent when: - all visitors to your home are greeted w/ hand sanitizer. - your idea of a celebration is sleeping in your own bed without a child.

We did gluten free for 4 years and imagined (I think) some improvements just because we wanted to see it so badly. When we discovered PANDAS we added the gluten back in and saw no difference.

Very well! She got on the bus this morning for the first time in at least a month! Tuesday is the day she gets to go to the store and she did a great job shopping and accepting when she couldn't buy everything she wanted! She's back, I think!!

Allie brought home a picture of herself yesterday and she has the exact same expression on her face as you do in your avatar. My first thought when I saw it was you!

:D :D :D :D :D !!!!!!!!!

In September Allie began another PANDAS episode- you may recall, I had great difficulty finally getting the rifampin/augmentin treatment that has worked so well to bring her back in the past. We did finally get that treatment at the end of October/beginning of Nov. She improved a little on that but was still having a pretty rough time. Last Friday, we did IVIG a week early because we were planning on being out of town this week (trip was canceled so not doing that now). She seemed a little better on Saturday, even a little more better (ach! listen to my bad grammar!) on Sunday (only one short episode of fixation w/ SIB & aggression). Today after school I'm seeing her revert back to some prior obsessions (spinning things), but not with the intensity we saw previously and no SIBs or aggression w/ it. Communication is returning as well. Could we really, finally be on the mend? I'm daring to hope that's the case and this is not just a "good blip." She's also reverting back to some old videos that she used to obsess over- but again the intensity of it is reduced from the most recent ones (Dionne Warwick's Walk on By). She's laughing and happy right now- that magic laughter, not the manic kind.

We did remove tonsils several years ago, when we didn't really know what we were dealing with yet. I mean we thought PANDAS, but only had the old NIMH site for treatment advice. Maybe if we'd kept up the abx it wouldn't have been so bad, but we ended up with the worst exacerbation ever following the tonsilectomy. But, I have to say, what I mostly hear from posters on this forum is good, helpful experiences w/ T&A so I think my experience was an exception. Still, I'm not sorry we did it- we were desperate and just trying to do anything that might help. If we hadn't removed the tonsils, I'm sure I'd still be wondering if we'd done enough or if that would help. My daughter was already in pretty bad shape when we did the tonsilectomy (PANDAS symptoms raging), so the advice I would give is to try to get your child in remission and free of infection before/after- plenty of abx.

Oh, wow! Thanks for posting, you made my day!! I mean sorry for the pancreatitis, but golly, it still sounds better than PANDAS symptoms!