peglem

Even if she can't/won't do the work- it might mollify the school if they consider her to still be getting content while she's out. A face saving cover.

I'd talk to the school about pulling her out. She's not learning anyway. Do you have attendance accommodations in her 504? Maybe just call her in sick for the rest of the year, or they could send work for her to do at home. Really, what's the point of you and her (and her classmates) going through this everyday?

Just 5 days. But, maybe she was getting ready for all the changes before that and that's what caused her symptoms to ramp up (dental issues always cause flares)- which prompted us to do the prednisone anyway. We'll never know. But-her symptoms did improve!

From what I've been reading they also begin menstruation when they are close to their adult height (according to this article, they may grow another 1-3 inches after they get their period). http://life.familyeducation.com/puberty/menstruation/42264.html I swear, after the prednisone, my daughter put on 10 lbs, grew 3 inches, went from an A to a C cup, began menstruation and began cutting her 12 year molars all within a 2 week period! It was like all that growth and development that should have been happening over the previous 3 years descended on her all at once.

Argh...I don't know if my daughter cleared on clindamycin or not. 2 days after finishing, she tested positive on the rapid, but was culture neg. So does that mean she cleared?

My daughter has had a lot of IVIGs and I have never smelled it on her breath. What does it smell like? I can smell infection on my daughter's breath. Is it possible that she has some kind of infection that the immunoglobulin is attacking? What I have noticed with most of my daughter's IVIGs is that her urine and feces smell "mediciney" for about 1 day.

My daughter started with the breast buds @ age 10 (but may have been triggered by risperdal), and it kept seeming like she was going to get her period and lots of PANDAS symptoms were ascribed to her impending menstruation. But she did not actually start her period until shortly after (very shortly after) her 1st course of prednisone at age 15. Turns out, at the same time, she began cutting her 12 year molars, which the dentist tells me come about the same time as menstruation in girls. I don't know if the prednisone contributed to this developmental burst (her doc says they get processed into hormones, or something like that) or if the developmental burst caused the problems that prompted the use of prednisone. She did not have a second period until 2 months later and has been mostly regular since. I'm told though, that girls tend to begin menstruation as they approach the 100 lb mark in their weight (which was true in this case and in the case of both of my other 2 daughters), but that happened with the prednisone as well. It was like my daughter grew from a tiny girl into a woman in the course of 1 week.

I know! But the lack of typical symptoms and lack of titers indicates to most physicians we've seen that there is no immune response to the strep- which (I guess) is what they consider a strep carrier to be: someone who has strep as a normal part of their flora w/ other flora keeping it in check so there is no immune reaction and hence no problem? See, I think they should be asking WHY there is no immune response to the strep instead of assuming its just okay.

I don't think there is a test. But, it is unknown if strep carriage is really "benign" in our kids like so many docs will tell you. If you suspect carriage, try clindamycin to clear. My daughter repeatedly tests positive on the rapid, but cultures are neg. and seldom have a titer rise or elevated titers. Things that can cause false pos. rapid: colonization with staph, non-gabhs strep (that shares the antigen that the rapid tests detects), dead gabhs that have not been removed by the body. When your daughter has + strep tests, does she have typical symptoms of strep throat, or just behavioral/neurological symptoms? Mine just gets the behav/neuro symptoms- but abx improves those, so I figure it doesn't matter if she's a "carrier" or not- the strep is causing a problem for her. She gets behavioral/neuro changes and usually complains of her throat hurting, the reason for thinking this over is her present Dr. (who is not a PANDAS Dr.) keeps telling me "we gotta catch those elevated titers on paper!" I've tried to reason with her that maybe not all PANDAS has elevated titers, but she basically looked right through me and repeated, " We gotta get them on paper!" She's referring us on to a PANDAS dr and wants them before we go for our appt. I dont see it happening, and I'm sure not gonna subject my dd to any more blood draws than we have to. It doesn't really matter on dd's part, since we are going to a real Dr soon, but more me just exploring the big bad world of PANDAS. BTW, We also have positive rapids, with neg cultures. Thankyou peglem ! A "real" PANDAS doctor will not discount a PANDAS dx based on titers. Its frustrating to be stuck in the "carrier" limbo zone.

I don't think there is a test. But, it is unknown if strep carriage is really "benign" in our kids like so many docs will tell you. If you suspect carriage, try clindamycin to clear. My daughter repeatedly tests positive on the rapid, but cultures are neg. and seldom have a titer rise or elevated titers. Things that can cause false pos. rapid: colonization with staph, non-gabhs strep (that shares the antigen that the rapid tests detects), dead gabhs that have not been removed by the body. When your daughter has + strep tests, does she have typical symptoms of strep throat, or just behavioral/neurological symptoms? Mine just gets the behav/neuro symptoms- but abx improves those, so I figure it doesn't matter if she's a "carrier" or not- the strep is causing a problem for her.

Yippee! That's just amazing!

She probably won't so much crash as just slip back slowly (if she goes backwards). But, hey, now you have a rescue med!

Hearing that makes my brain feel better, too.

I think Stephanie2 used it for awhile. Do a forum search for it and I think you'll find some info. IMHO, I'd want to see tests that my child does have high testosterone levels. I've been dabbling in research that explores the connection between the various sex hormones and immune/autoimmune problems. Wondering if I should try progesterone for my girl. I don't know enough yet, but so far, as usual, it all seems to be about balance.

My daughter seems to have so many flares w/ dental stuff. I wonder if we'll see significant improvement when she reaches dental maturity. Pity, she's also delayed in dental development.

For us, the pre-approval was all handled by the doctor's office and there was no hassle at all. I'm not sure how it was coded for insurance, but I know that the paperwork for admitting (we have it done at the outpatient unit of a children's hospital) said PANDAS for the dx.

What would the actual dose be? My daughter gets 1.5g/kg in a one day infusion. Lower doses work by correcting low IgG. Higher doses are given for autoimmunity- when the body detects high #'s of IgG protein in the system it suspends making its own IgG, including the ones that are against self. The higher doses are also supposed to be anti-inflammatory. We get monthly infusions (as far as I know my daughter does not have lyme or co-infections, but has not been tested). The 1st 2 infusions were low dose, and we really had a tough time after those. The higher doses seem to have fewer side effects for her than the low dose ones did.

I think Clinda cleared my daughter,too!

I know when my daughter does the rifampin/augmentin combo treatment things are pretty bad while she's on them, but afterwards (once the yeast is cleared up) we get about 3 months of good stuff. BTW, diflucan+rifampin is pretty hard on the liver, so we wait til the rifampin is done to do the diflucan and we do liver checks during treatment as well. Augmentin always, always amps her yeast. On the other hand, if the seroquel is helping her sleep better, being well rested goes a long way towards improving mood!

Our doctor sent in a swab for sensitivity to either sonora quest or labcorp. They didn't get anything to grow though, so it wasn't completed. It was one of those rapid positive/culture negative situations. But, the problem with these tests is they are testing sensitivity in a petri dish which may or may not work out the same in the body w/ other micro-flora and what not. It could very well test sensitive to things you've already tried that didn't work.

If you have a copy of your 504 plan and if it has a provision for bathroom breaks- just bring it with you and quietly show it to the teacher when you need to go. Or, just get up and go anyway and if the teacher makes a stink about it you can show it to the administrator when you get sent to the office.

Don't know why I didn't see this sooner- but yes! I think my daughter has bouts of hypoglycemia. Its very hard to check, because she's usually in fight or flight mode when she gets blood draws (needle fear) so her blood is flooded w/ glucose at the time of draw. But her last draw, when she was really sick- she tested low normal for fasting state (the ranges are always set for fasting), but had not been fasting and was in fight or flight...so it must have been pretty dang low before she spazzed out! I've observed too, that if I keep her fed- small snack every half hour or so, those F or F episodes are greatly reduced. I keep telling the school to keep her fed, I explain this to them...they ask her if she wants food and if she says no, they don't give her any. At home, I just get food and put it in her mouth, no matter what she's doing and that works! We have a glucose meter for her, but pretty early on we figured out that she'll read high or normal because of the ForF reaction to the poke.

I would wait until he is feeling better before giving steroids. Steroids relieve autoimmune symptoms by slowing down the immune response. But, that can allow pathogens to flourish.

Sometimes ibuprofen helps to reduce symptoms as it will reduce inflammation. I wonder if asthma treatment may help? But I would worry about giving steroids when ill.

Does he want to get the results before the IVIG or just get the draw before? If its the latter, they should be able to draw the blood before they hook up the IV, from the same puncture. Then you wouldn't have to get 2 punctures. I try to save bloodwork for IVIG day because of this. Wow, that's a shame. Its so convenient to just do the draw when you already have a vein open!