peglem

Well, practically speaking, cost is a factor in treatment. I think I'd skip a treatment or 2 and see if I can see a difference. Sometimes we don't know whether something is helping until we go without. You could always start up again if your child takes a dive without it.

We've used nystatin pretty consistently for several years to prevent yeast. We've not had problems w/ c-diff, but not sure that has anything to do w/ the nystatin. We do have frequent vag. yeast, which we treat w/ diflucan.

Dang, I really want it to be the steroids- easy fix.

I'd go with regular dosing of ibuprofen according to how much/how often the label says to give. If that lessens the headaches in duration, frequency, and/or severity, I would think this would be very good information to give the doctor when you see her. And, yes, many of us see a good deal of symptom improvement on ibuprofen.

So, I'm worrying over this like crazy. Hoping your feedback will ease my mind. Allie has had a bloated, distended belly for several months now, and her monthly has become 3 days of spotting (after 2 years of completely normal). So, I took her to a pediatric gyno who ran some blood work for female hormones and, apparently, adrenal hormones. Everything came back normal, except low adrenal hormones, and they are significantly low according to the nurse who reported it to me. The blood draw was taken @ 48 hours after finishing a 10 day prednisone taper. Could that cause the adrenal hormones to be low? Everything I've read says that it could be caused by suddenly stopping prednisone after taking it for an extended period of time, but not if you taper it. The thing is, the distended abdomen could be a symptom of adrenal insufficiency, and she's having episodes of fatigue and frenzied bursts of activity, "hot flash" events, and headaches are back. Should I stop giving ibuprofen? Is IVIG safe if there is a kidney problem? Could this be induced by IVIG? The blood was drawn immediately prior to her last infusion, but she's getting infusions every 3 weeks. The gyno wants to repeat the test to make sure its not a lab error, but we were going to wait to have the draw until her next infusion (10/12). This is such scary stuff. She's getting an abdominal and pelvic ultrasound tomorrow- maybe that will shed some light...

So, this wouldn't, by any chance be Dr. Bettleheim, would it? Oh, wait, no, he did give autism diagnosis...

Us, too.

Just guessing, but Dr.t's theory still is based on an errant immune response to microbes and other immune system stimulation. So keeping the bacterial load low reduces immune stimulation maybe?

So, Dr. T's theory got me doing a little looking around and I found this: http://physrev.physiology.org/content/88/3/1183.full.pdf Histamine in the Nervous System HELMUT L. HAAS, OLGA A. SERGEEVA, AND OLIVER SELBACH Institute of Neurophysiology, Heinrich-Heine-University, Duesseldorf, Germany And an excerpt from the section on the immune system link:(page 3 of the pdf doc) I haven't read the whole article yet but there are links to virtually everything that has been discussed on this board: methylation, taurine, sleep issues, NMDA receptor, narcolepsy, eating issues, anxiety, etc. And I think Dr. T's theory is not necessarily in conflict with what other PANS researchers are finding, just that the basal ganglia is affected via the tuberomamillary nucleus of the posterior hypothalamus.

magnesium helps my daughter with that.

I really do have the utmost respect, bordering on awe for those professionals with the courage and integrity to stand up and figure this out for us. The request just instantly brought the whole conversion disorder up in my mind. I understand them not wanting it thrown to the public out of context, but I think if they are presenting something publicly then they should have an official summary available so that when it is discussed (and I think it will be despite their request)there is an official statement of some sort that can set the record straight. I wish I could travel to the conference and get it straight from the horses mouth, but I can't afford the conference and I have a sick kid here that keeps me pretty homebound anyway. So how are we supposed to get the information?

All I know is that the fb PANDAS group has been told that the presenters/conference asked that the info not be spread on social media. My answer to this is not have it open to the public. I will refrain from expressing my feelings.....PANDASRadio with Marcel Cairo(?) will host Dr. T next Wed. Supposedly, this is "an approved" method of dissemination of the info presented. Discussing on social media has the potential to cause mass conversion disorder!

My daughter has developed giant tummy starting last May. I don't know why- no lexapro here. She's had some med changes, but that was after the tummy started swelling. Trying to get an abdominal ultrasound to see what's going on.

Well, I'm of a little bit different opinion-coming from the perspective of having had a huge deal of trouble getting treatment for my child w/o laboratory evidence... Doctor's often feel they need some kind of justification for treatment and in the absence of labs to back her up, the doc may be hesitant to extend the abx. But if you can say you observed improvements on abx and worsening when off, that may give the doc the justification she needs to rx a longer trial of abx. So you may want to take that one step back in order to confidently move forward.

Okay, black vomit sounds really serious! Is that blood?

It could be an indication of a specific antibody deficiency- an inability to mount an adequate defense against encapsulated bacteria.

A few days of abx should not affect titer levels. Antibodies (titers) hang around for a few weeks at least. Symptom improvement on abx w/ worsening off can be a good indication that the behaviors are related to bacterial infection- so, yes.

So, this morning, I forgot to give my daughter all her meds except the levothyroxine. That means she got no minocycline, no propranolol and no amoxicillan (she's in the middle of a course to treat UTI), and no boulardii. Wow, guess she really does need them! She's been very well this week after a really difficult time w/ the UTI...hopefully she'll be back on track by tomorrow. The silver lining...I'm now very sure she needs her medicine.

So, this morning, I forgot to give my daughter all her meds except the levothyroxine. That means she got no minocycline, no propranolol and no amoxicillan (she's in the middle of a course to treat UTI), and no boulardii. Wow, guess she really does need them! She's been very well this week after a really difficult time w/ the UTI...hopefully she'll be back on track by tomorrow. The silver lining...I'm now very sure she needs her medicine.

Yes, probably hypogammaglob.... On the cocksackie (who named that one?), when she says its old, probably means that IgM was normal or low but IgG was elevated. That doesn't necessarily mean that its an old infection. IgM should be elevated at the beginning of an infection, until IgG levels are adequate, then they recede. But, elevated IgG could either mean an old infection, or a current infection that had a low IgM response, or a chronic infection that flares and recedes but never quite goes away.

I'm happy to hear your child is doing well enough that you've never considered this an option. For some of us, things are so bad that we feel we cannot take care of our children or keep them safe at home. Its really an individual decision as we all are doing the best we can for our kids.

I just don't see any way to do acupuncture w/ Allie's needle phobia. Allie is into toddle aged things. Raffi-OMG! Right now into Schoolhouse rock. She's very OCD w/ it, though, repeating lines over and over again. I think the 200mg of minocycline is working fine- but she's still getting infections that minocycline doesn't treat (like UTIs).

We use 100mg minocycline 2x/day. We switched from zith in June. She still has flares, mostly from UTIs and we add amox when those crop up. And yes, we use steroids, as long as it has been a sufficient amount of time since the last usage that her doc feels like its safe to do again. Her doc has referred us to a rheumy because he wants to try Allie on immune supressants- something like methotrexate. He feels like if we can't get the infections under control then we need to reduce the autoimmune impact of them. IDK what to do.

If the augmentin is working for you, why the switch to keflex? Have you told the doctor that symptoms appear when you switch to keflex?