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On the opiate-effect side of things, I've read that Lactobacillus rhamnosus is able to break down the proteins in gluten and casein that can create the opiate effect if they get through the gut. The idea is you can use L rhamnosus to break them down and it should help (if gluten sensitivity/intolerance isn't the issue). Not really researched it, mind you, just thought I'd throw it out there...

quick mention - udi's isn't good for those with an egg allergy/sensitivity. I think most, if not all, of their things contain eggs.

philamon - yeh, sorry, it's a brand name. See the link below http://udisglutenfree.com/ our local food coop carries it but I suspect lots of other places do too... the bread is great as toast not heavy like some gf ones, the muffins are good enough to eat even if you're not gf and (I think it's udi's) they do a really good frozen pizza base, not all crumbly and mushy like some. We also get a corn/quinoa pasta that I think is virtually as good as the normal stuff called Ancient Quinoa Harvest. The real sticking point for us is gravy (the brown british type) and hot dog buns that aren't too yucky. We found some really good free range pork hot dogs with nothing nasty and now need some buns, it almost feels like a healthy meal Glutino do good orea type cookies, bit gritty but taste good. Theres' so much out there.. super pricey, some of it, but tastes good...

Hi- we are also embarking on gf. My dd had gluten sens. bloodwork that all came back normal but when we did a stool test she had super low secretory IgA. Normal >600, low 400-600, she was 17 altho' antigliadin is supposed to be above 13 for this stool test and hers was 9, the ped and md at the lab thinks she is still probably celiac 'cos the ratio of SIgA to antigliadin is so bad. She also had 1 gene for celiacs but so does 30% of the population and a great aunt with dx celiac. we've been told that there are 4 different blood tests that can be done to check celiacs. Some of which are only useful if you do a total IgA too. All of the blood test can be false negative. Stool samples are worth doing. Gene testing can only positively rule out, not rule in celiacs... and without the biopsy you can never know for sure. To really tell through diet, we've been told, you need to be gf for 6 months as the antibodies can last that long in the body... Tough for kids (especially with a non believing dh ) but we're going to try and see if it helps. Udi's makes great breads, muffins and pizza bases btw

thanks vickie :-)

ok, so this question probably means I shouldn't be trusted with a computer but how do you do the cookies thing?

sorry if this has been posted before http://www3.interscience.wiley.com/cgi-bin/fulltext/123305607/PDFSTART "B cells and antibodies are increasingly recognized as an important feature in a broad variety of autoimmune and infectious central nervous system (CNS) diseases, such as multiple sclerosis, neuromyelitis optica, paraneoplastic diseases, acute demyelinating encephalomyelitis, Sydenham chorea, stiff-person syndrome and channelopathies. Autoantibodies might serve as a biomarker to identify the disease entity. Beyond this, autoantibodies can be a relevant pathogenic component. The present review focuses on strategies applied to identify the targets of autoantibodies and to test their pathogenetic relevance. The pathways of autoantibodies into and out of the CNS are summarized and the issue whether pathogenicity requires recognition of an extracellular target is discussed."

Great for the lay person like me to understand, underscores the importance of the BBB http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783680/ "We propose that the normal immunocompetent B cell repertoire is replete with B cells making antibodies that recognize brain antigens. Although B cells that are reactive with self antigen are normally silenced during B cell maturation, the bloodbrain barrier (BBB) prevents many brain antigens from participating in this process. This enables the generation of a B cell repertoire that is sufficiently diverse to cope with numerous environmental challenges. It requires, however, that the integrity of the BBBs is uninterrupted throughout life to protect the brain from antibodies that crossreact with microorganisms and brain antigens. Under conditions of BBB compromise, and during fetal development, we think that these antibodies can alter brain function in otherwise healthy individuals."

thanks for the responses.. Chemar - It is the DGL type that we are using, thanks. Our ped has also put our depressed cortisol dd on the lic root too. So far my ds who was waking anything from 6-8 or more times a night, seems to be sleeping better - only 3 wakes this week so far each night but we have been away to the seaside for 4 days so he has been much more tired than usual, having way later bedtimes. Still I am hopeful that the seriphos is doing the job of combatting his late night, high cortisone levels. Here's to more sleep! (hopefully)

both kids breastfed

momto2pandas - (sorry don't mean to hijack but) I was just wondering how your children are doing?

Hi - not sure who you have consulted with but we are working with our ped who is super knowledgable and also Dr T by phone. Our ped rxd abx and steroids for our 2 year old son (dd7 has a a more clear cut PANDAS dx) due to behavioural signs and an elevated CaMK and 1 elevated ANA but Dr T concurred and would have been willing to rx if we had needed him to. He has always been great at getting back to me quickly, although, some people seem to have an issue getting hold of him sometimes but that hasn't been our experiance. I wonder if it may be worth talking to him.. just a thought.. good luck

thanks

and thought it was interesting enough to post.... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077526/pdf/507.pdf

hi - not sure of this paper's relevance to you but found it looking for info om ny dd's arm tremor when she was 1st dx'd with PANDAS http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077526/pdf/507.pdf I posted it 'cos of the eye movement involvement

Momwithocdson - hi.. for my dd all her numbers for infection eg ebv, strep, herpes etc are normal. All her CBC stuff is normal. All her IgGs are normal. In fact nothing seesm to be wrong on paper but when we start looking at numbers for "organs" such as thyroid, liver, adrenals, gut those are the ones that are off. I can't decide if we are seeing a damaging response to system-wide inflammation (that includes BBB breach) that is cause by the PANDAS or if her PANDAS is just yet another example of her excessive inflammatory response....

Hi - I received an e-mail from Dr T on 6/15.. but haven't had reason to contact since. I always e-mail him, never try to call. He's always been really good at getting back to me quickly, if I mail him....

Hi - could you telephone consult with another PANDAS dr who will rx abx.. such as Dr T or Dr L. IMO, if you can afford it, never hurts to get more opinions and you can get an abx that will sort the myco...and consequently, hopefully, reduce your dd's PANDAS symptoms.

Hi - I usually hang out on the PANDAS board but thought I may have more responses to my adrenal questions over here as there are so many more natural supplement discussion on this side. My ds2 has tested low for am cortisol and high for pm cortisol (also way high for DHEA). He is a terrible sleeper. Our ped has put him on licorice root for the am and seriphos for the pm. I was wondering if anyone here had used these supplements for adrenal support and what your experiences have been? thanks....

oops sorry, my ds2 got to the pc! what I was going to post was that I'd been a terrible nail biter all my life (according to what I've read nail biting is just another version of trich, as is skin picking etc). Anyway, I was dx'd bordeline low thyroid after my dd's birth. I was started on T3 and T4 thryoid replacement and within 5 days of starting the meds, the nail biting urge just disappeared. Not saying this is the case for your child but thought I'd mention it. We tested my dd's thyroid levels pre a flu she had last year and she was ok. Post flu and a bad PANDAS flare, she tested with low T3. That episode remitted completely, with the exception of the nail biting which remained. (I'm wondering if my dd responds to immune assault with a systemic inflammatory process that is severe enough to be damaging a number of her body's systems...) anyways, thought it worth a mention

Hi - just wanted to mention my experiencet

Hi - just wanted to mention my experiencet

Hi - just wanted to mention my experiencet

Hi - just wanted to mention my experiencet