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Hi - yes! we have had this on 2 occasions.. once when dd was about a year old and once last year she caught a quick vomit/lethargy/slight upper resp type bug from school that set off a PANDAS flare. On both occasions she was swollen for less than a day, the second time even shorter than that really just a few hours. For her it isn't the front cheek area it's more swelling along the hair line from side of temple down to chin.. sort of. My mon gets the parotid gland swelling thing and at 1st the ped thought it might be this but they couldn't really get to the bottom of it. My brother has a dx of angiodema... also in his face. Basically his docs can't figure it out either but he gets more swelling that also includes lips and tongue. I've ben reading a lot about autoimmune pancreatitis and it's link to Mikulizc's symdrome.. some docs reckon it's linked to Sjogren's. There seems to be a link here for our family but I can't quite get my scientifically rubbish brain to pin it down. but you may want to look at angiodema (bit of a catch-all) and facial gland swelling for starters. For us I believe it could be related to immune system activation and IgG4 infiltration... probably reaching here a bit with this but our ped sees a lot of digestive enzyme insufficiency in her PANDAS patients... autoimmune pancreatitis? sytemic IgG4 infiltration? I'll try and find the link that I was looking at that lead me down this (maybe rabbit tunnel) route...

I just want to thank everyone who shares their stories on here.. the sadness, joys and despair. It makes things so much easier fo rme to come on here and read that others know wha tthis is like. Without this site and the contributors, the wonderful parents and teens and adults who suffer with this disorder, I would be awash in a sea of PANDAS. I can come here get marvellous, well informed advice, shed some tear for my own family and others' (done that 3 times tonight already reading your posts) and go away and continue to get on with dealing with PANDAS. So thank you to you all..

I'm sorry I don't have any advice to offer but wanted to send some support and internet love. Perhaps others can give you some good advice on ways to approach your mom. Hang in there, life can feel very lonely at times, especially during your teens (if my aging memory serves me correctly). Does your mom know you feel this bad at the moment? I hope you start to feel some relief soon....

Hi - our really great pharmacist dude (who does loads of research and is into natural and nutrition etc) recommended amphotericin B (sp), as his antifungal of choice. I thought I'd mention it 'cos you don't see people refer to it often and it may be useful for some. There are no known resistances (unlike diflucan which c. krusei is resistent to) and it stays within the gut and is well tolerated. He says he can compound it (so I imagine other pharmacists can) with FOS to make it palatable for small kids. We haven't tried it yet but intend to if, on re-test, we are still fighting yeast.....

Hi - bit of an aside but our really great pharmacist dude (who does loads of research and is into natural and nutrition etc) recommended amphotericin B (sp) for us, as his antifungal of choice. There are no known resistances (unlike diflucan which c. krusei is resistent to) and it stays within the gut and is well tolerated. He says he can compound it with FOS to make it palatable for small kids. We haven't tried it yet but intend to if, on re-test, we are still fighting yeast.....

Hi- do you mind me asking if you have gotten to see someone in the seattle area.. we got knocked back form seattle children's immunology when they saw the pandas dx.. they said "you're in the wrong place".... I was wondering if the climate there is changing... thanks...

kim - sorry but my brain ain't that hot.. is this article saying that immune compelxes that form (when antibodies bind to antigens) and whose deposition can be linked to autoimmune are degraded by enzymes. Consequently, if you don't have enough enzymes, you're at increased rsik of autoimmune? thanks :-)

Hi - we did a poo test with diagnos-techs thru dr keller our ped. Amongst others it tested for chymotripsin which I believe is a protein digester but is indicative of all enzymes. If you want a more precise test of all enzymes I assume you can do a poo test that will look at all of them and there additional tests you can do to look at pancreatic sufficiency. Our ped has just given us an enzyme that my kids can open (in capsules, they won't swallow) and they take just 1 a day and she rates it.. it's called megapolyzyme by interplexus inc. The MD at the lab doing the testing said the lack of enzymes could be throwing their whole guts off.. allowing for bacterial and yeast infestation... The test was $235 paid up-front but may be claimable against our ins...

Hi - Just a quick question.. I was wondering how many had had digestive enzymes checked and if they came back low? Just 'cos of gut/brain thing.. our ped supposedly sees a lot of this in her PANDAS kids...

Does anyone have a timeframe for Dr Cunningham's current study to be completed/written up/published etc? Some folks that went to the Autism One conf, mentioned some preliminary data... is there anything quotable coming out yet, that may have been discussed at the conference? thanks...

thank you...

found this http://www.suite101.com/blog/daisyelaine/d...ne_pancreatitis

yes please... :-) (Find I'm chasing many a rabbit down tunnels (Alice-like most the time) since PANDAS came to visit....) I just got to thinking 'cos our ped says many of her PANDAS kids have low chymotripsin (1 digestive enzyme type) and Dr K talks of GI problems, usually GERD, being a main symptom with adol/adult variant PANDAS.. could it be pancreatits instead of GERD, getting misdiagnosed... (my dd also has very elevated IgG4) thanks for looking, I'll go googling too.. race ya! :-)

hi - do any of you guys have a child/children with PANDAS and pancreatitis (or GERD)? I'm wondering if my dd's stomach problems that I had started to assume were possibly GERD 'cos they are very similar to what I had between ages 11 and 26 ish, might really be pancreatitis and mine also. Both my kids have come back super low on a test that is indicative of digestive enzymes. I never had any testing done, took GERD meds to no avail and suffered really extreme pain at times and now reading symptomology of the 2, I probably fitted pancreattis symptoms better. I thinking and wondering if system wide inflammation was at work as my dd's stomach issues have precisely paralled her PANDAS symptoms during these last 2 flares... any ideas welcome... thanks..

me again.. sorry.. been googling some more and (not surprisingly) found papers suggesting probiotics will upregulate sIgA but also that fructo-oligosaccharides (FOS) and Isomalto-oligosaccharides will do this also and, if I'm reading it right, shift immune response from Th2 to Th1.....

oohh.. just found this http://www.enterol.pl/mechanizmy/digestive...nd_sciences.pdf looking at increasing SIgA in rats using sacchoromyces boulardii.. we use s.boulardii laready but may be upping it now..... :-) off to google some more

thanks for the responses folks... to be honest the low secretory IgA probably worries me the most 'cos although my dd and ds don't get many infections and their other immune numbers are ok, if my dd, especially, does get sick it often seems to go to her stomach and there always seems to be a stomach element to the illnesses that set off her PANDAS flares/episodes. I also worry about the digestive enzyme bit.. 'cos their numbers are so low and I've been googling and scaring myself with pancreatitis and the like. We also have some type 1 and type 2 diabetes in the extended family and although I know pancreatic enzyme insufficinecy doesn't always go hand in hand with pancreatic hormone insufficency, it's got me thinking..... Stephanie - is the digestive enzyme your 2 yo takes a pill? I spoke to our ped briefly (got an appoint this week) and she suggested a good one but it's a pill that neither of my kids will swallow and she says the good ones can be bad for their teeth if chewed...... again, thanks for the ideas...

just bumping for ideas....:-)

Yeh, if I recall correctly, it was during a talk Swedo gave, she said gotta space pen. 12 hours apart and if you're more than 3 hours late, then you lose cover and it takes 3 days to get full cover back....

Hi - for us the sensory stuff goes hand in hand with PANDAS. When the PANDAS recedes, so does the SPD. My dd7 gets the tactile defensiveness, eating isues relating to taste and texture and some noise stuff. My ds2 is the crazy banging into stuff type. He also loooves hot mints.. super hot kind that kids can't normally tolerate, sensory seeking again. For my dd the SPD totally disappears when her PANDAS symptoms do. The only excpetion to that is maybe some super tight clothes across chest or underarms. My ds is not so clear cut but he's 2 and his PANDAS is less acute onset than hers.. or less noticeably so. She's a classic sudden onset kid, he's a little more chronic feeling/waxy wany type but it's so difficult to know 'cos of his age and I don't feel we've really got a handle yet on him 'cos we haven't "charted" him as closely as his sis. Certainly, for my kids though, I don't feel that the SPD is a seperate entity, just yet more PANDAS symptoms...

Hello We had a diagnos-techs poo test run on both kids (dd7 PANDAS, ds2 almost def PANDAS). I was wondering if anyone with the time and inclination would mind giving me their thoughts on the results. Both kids have been on proph. zith for many months (ds) years (dd) and more recently, treatment levels of zith. DD no yeast cultured but many seen rare/moderate normal flora pathogens - rare, klebsiella, enterobacter, serratia - moderate alpha hemo strep Secretory IgA 17 - this was super low, with low reference range <400 Chymotrypsin - 5 with normal being >9, low 4-9 DS light growth of candida albicans and candida krusei trace of saprophytic fungi (this stuff grows on dead stuff.. yum ) moderate normal flora pathogens - moderate Klebsiella, enterobacter, serratia - moderate alpha hemo strep - rare gamma hemo strep total secretory IgA 47 - again very low, low being <400 alpha anti chymotrysin - 376 - which supposedly shows small intestine irritation (normal lysozyme, if this was elevated then colonic inflammation but wasn't) chymotrypsin abnormally low at <3 chymotrysin is marker for pancreatic output/enzymes. I've researched individual test results but wonder if anyone can make a big picture from this? I'm thinking lots of abx aren't helping but my dd tested very similarly to this 2 years ago at which point she hadn't had months of abx. In fact, this time around she wasn't showing the small intestine irritation that she was showing last time. My dd has allergies (cashew and pistachio and 2 years ago was 1 year on from becoming un-allergic to milk) and we suspect my ds but can't pinpoint it. I am wondering if this is playing inot the intestinal irritation. Anyways.. any ideas gratefully received.. thanks

EmersonAilidh - I am, as I am sure are many others on this board, really grateful to have people like you on this forum who are happy to discuss these issues from the point of view of the person with PANDAS. It is so hard dealing with this as a parent that I feel I sometimes lose sight of my children in all of it and may even forget that thay are dealing with this in a far more intense way than I am. Also having the added understanding of seeing it from their point of view really helps. thank you...

Hi - Dr T recommended clindamycin for us if we got breakthrough strep. Both my kids are on azith proph. My dd just tested +ve for strep in the gut, so we just started cleocin (clindamycin) and she reckons it tastes bad but not gag bad and she is taking it ok. 15ml 3 times a day for 10 days (not sure of the mg per ml, sorry). We are super upping her probiotics and s. boulardii to prevent anything nasty from the clindamycin. Have youthought of doing ibuprofen and curcumin )if you don't already) to keep inflammation down? Good luck with your ped and hopefully, it's just a virus and won't poke her immune system too much....

Yeh, according to our tests my dd is the healthiest girl alive... that's never had anything! our camK wqas 165% out of exacerbations with borderline anti tubulin. She had an elevated GM1 anti lysoganglioside the year before. All her others including CRP, icomprehensive immunological lyme, cat ones, ebv, myco, strep all within normal. We have had positive swabs but only ever for beta hemolytic NOT group A.. so hey.. we got a well child.. oh yeh with the PANDAS exception.... Sounds a bit munchausen, but my heart drops when they come back within normal... still looking for that trigger or reason for this.. we're managing it well but I'd like to see something in her labs we can fight...