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Thanks folks I am very content at the moment. Not something you normally hear from a PANS parent, I'll warrant. Ds wasn't in exorcist mode and it would be unfair if I made it sound like he was. More like terrible twos on acid. But tiring enough for him and everyone round him. I used to feel that I couldn't live with 95% but my dd is happy, more than functional, social and just a delight. I know she will be a strong, intuitive adult that, maybe, the world couldn't handle at 100%! Of course, I would love 100% and also I am not naive enough to think that this over until this fat momma sings but I am quietly optimistic for her for the first time. I'm hoping that the methylation issue really is key for us and that once I can get past the fear factor with giving it to ds on a permanent basis rather than hauling back every time I see a flicker of PANS, then maybe we can make some similar headway with him too. If I could get both to 95% permanently that would be great and maybe we can even get to 100% with some more tweaking of methylation and other pathways. Our great ped has borrowed my Yasko book and I'll be taking her the CDs this week that go with it. I'm thinking we may stump up for the full genetic test. If we do go that route I will follow up with what we find....

Hi - yeh my dd had one exacerbation that had all the signs of getting bad quickly that was ended totally by steroids. She didn't have another exacerbation until many months later. She had another that was massivly improved to about 90% with steroids. Unfortunately, since that particular one she has never gotten back to 100% but steroids have proven very effective for us. I do wonder if for us the methylation issues lead to high histamine and high histamine leads to a crappy BBB. Ds is homozygous for C677T. My father had alzheimer's which is also postulated to be an issue with MTHFR polymorphisms possibly due to glutamate but also vascular changes and BBB.

Just thought I'd post a "where we are now" update on ds (mainly) but dd too. Ds4 has probably been PANS since about 7 months (we can track it back that far only 'cos it was dd8's first recognised episode and hindsight etc). Ds recently flared following a strep infection with no physical symptoms but our PANS savvy ped swabbed 'cos of his uptick in PANS symptoms. He responded well to abx by day 10 (zith). This was followed a few weeks later by another uptick in PANS. Rapid and culture negative but he had some ongoing stomach pain/cramps so it coulda been elsewhere. 2 separate rounds of abx reduced symptoms for a few days but didn't knock it out. Ds has had c-diff, so I am wary of too many abx but would have gone round 3 or tried other abx but xmas was upon us, stomach still was not happy so the day before xmas eve I gave ibuprofen. We have tried this somewhat haphazardly before and seen some slowing in symptoms during the 'saw-tooth getting better part' of an exacerbation. I gave 2 doses a day and by halfway thru xmas eve ALL the aggression (we had LOTS, hitting spitting, throwing, wild rampages that you could only shock him out of, possibly some spitting ocd/tic thing) was gone and my tender, loving ds was back I kept him on 2 doses a day until new year's eve and then stopped. For a week I'd start to see some aggression/wildness creep back in and I'd give ibuprofen again but just 1 dose and wait to see what happened. It probably averaged 2 doses every 3 days or so. As of 2 days ago, no ibuprofen and no aggression. His tactile defensiveness has also gone (socks and shoes), his bedtime fear of all the globes dropping of the xmas tree has ended but the main effect has been on his level of aggression and hyperness. He still won't separate from me except to his Father, sleep still abysmal, he still is getting very itching so histamine still high I;m assuming. So he's not 100%. So - was he coming out anyway and the ibuprofen just masked symptoms until it was over? Both of my PANS kids do remit almost fully between exacerbations. Or did the ibuprofen do something more permanent, allowing the inflammtion to drop enough and causing some kind of cool cascade in inflammation and letting the BBB close or something.. anyways I'll take it Dd8 hasn't been 100% since June 2010 - bedtime rituals, has to come into bed with me halfway through night, some intrusive thoughts - low level and mainly clustered around bedtime, can get a bit stuck, some ticcing. I would say she generally hovers around 95%. Dd is a compound heterozygote for the MTHFR polymorphisms A1298C and C677T. She has been on 5MTHF, B6 and B12 for maybe 6 months haphazardly but really properly for 4 months or so. She has had a number of infections since Sept but no noticeable flares in PANS symptoms. For the previous 2 years she would flare in response to most infections. She ever so slightly upticked when ds swabbed positive for strep but hardly at all. I was waiting for all ###### to break loose but it never did. Is this due to the methylation support her system is getting? I'm hoping so.... Sorry didn't mean for this to be that long but I hadn't done an update in a while...... Thanks

Hi - my dd has some similar issues that may or may not be down to PANDAS - I feel they probably are... She is very slow at writing. This has been an issue since her last bad episode where she would seem to get a block. She knew what she wanted to say when talking it but couldn't seem to get it down on paper. That seems to have morphed into an issue of just going very slowly. School is choosing to call it methodical It is true that she is very conscientious and wants to get it just right but I feel it's all interrelated. Her grasp of math concepts is very good and she comes in well above standard for that but is having issues remembering things like number partners which other kids her age appear to be doing well. For her, the only thing that doesn't seem to get so mucked up is reading. She is Grade 3 but has the lexile range of Grade 8. As she gets further away from her last bad episode, I am seeing her methodicalness, as they're choosing to call it, diminish somewhat and I feel that if we can keep her well, her writing and math skills may close the gap with her reading ability. Until more recently, homework could be crippling 'cos it would go so slowly. I found I got very exasperated with it all but that too is speeding up as she remains mainly well. I can't quite decide why things take so long. Lots of kids can't rush when it's required of them but this feels different to me. My sister is exactly the same as my dd in this regard and can't be rushed for love nor money. One of those people who says they'll be out by 10am but it usually 2-3 hours later. Sorry I can't offer anymore or advice...

On a more serious note - having not read the full article but reading the responses here and concerns, this piece taken from the Pediatric Academic Society meeting May 2012 info had me worried. The bolding is mine. Is there a shift taking place in other quarters too, where emphasis is moving from autoimmune trigger to symptom presentation, which as others have said might be good as an overall move in search of the wider picture but disadvantageous to children who need treatment now. Maybe I'm reading too much into this extract but it looked worrying in light of the discussion on this thread. "The symposium will appeal to: clinicians and scientists who have been confused by the conflicting literature on PANDAS (and PITANDS); clinicians who evaluate and treat children with behavioral symptomatology; and researchers interested in post-infectious sequelae, etiology and pathophysiology of neuropsychiatric symptomatology, or animal models of behavioral disorders. Objectives:[br]- All Participants: Describe at least one scientific or clinical disagreement about PANDAS that will be eliminated by the PANS diagnostic criteria.[br]- All Participants: Use the three diagnostic criteria proposed for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) to accurately identify cases.[br]- Researchers: Receive suggestions for clinical, translational and basic science investigations of PANS. Chair: Susan E. A. Swedo, National Institute of Mental Health, McLean, VA Although there is continued disagreement about the nature and etiology of PITANDS and PANDAS, (Pediatric Infection Triggered Neuropsychiatric Disorders; Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, respectively), there is growing recognition that a subgroup of children with obsessive-compulsive disorder (OCD) are distinguished not only by the acuity of their symptom onset, but also by the presence of numerous comorbid symptoms, including emotional lability, anxiety, and motoric hyperactivity, among others. Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is the new name proposed for the subgroup, focusing attention on symptom onset rather than the postulated etiologies of PANDAS and PITANDS. The diagnostic criteria proposed for PANS have a similar clinical focus and facilitate recognition, diagnosis and treatment of the disorder. In addition to these improvements in clinical care, the revisions promise to provide new opportunities for basic, translational and clinical studies of childhood-onset OCD and related disorders. "

peglem - sorry but I've tried that search before and you just get Rachel Ray's Copraphila Recipes page

Hi - we saw inf disease at Seattle Children's when our dd first got her diagnosis. We had a sudden, overnight onset, a textbook presentation and a history of anecdotal strep but only had a "beta hemo strep not specified" swab result. We didn't get the help or reception I was expecting. I thought we had a solid dx and were just going there in order to get help in finding the strep and working out which abx to use for treatment and prophylaxis. I'm afraid, I felt dismissed, felt as if they saw me as a'munchausen by proxy" kind of mother and very disappointed that we didn't get the help we needed. We didn't even get to see the dr until the very last after we had been seen by a junior dr and a trainee who then went away and talked with the team. By the time we saw the dr, the team had made their decisions and the dr came to tell us it wasn't PANDAS and we had better look elsewhere in terms of help eg psychiatrist. They weren't outright rude, just super dismissive and I had no opportunity to argue/question. Now, or with better prep, I would've presented ourselves better and worked the situation to get something positive out of it.... This was nearly 4 years ago and the PANDAS world has moved on since then. If I were going back there now, I would find out the hospital's stance on PANDAS and the particular viewpoint of the dr first. The attitude may be totally different these days. I don't want to put you off, just want to recount our time there as it could've been a totally different experience for us had I known in advance what to possibly expect. Hope it goes well and that they are more receptive these days...

That's too funny - thank you..... Merry Christmas

Hi - I poste dthis on the PANDAS forum but LLM thought it worth asking here in case i'm seeing a detox issue. "Hi - I was just wondering if anyone has seen magnesium activating their PANDAS child? Could it be a methylation thing? He is homozygous for the MTHFR C677T. I only seem to recall good things being written re mag. Thanks Reading more baout it since original post, I'm wondering if LLm is right ad I'm seeing detox reaction due to the sulfate.... thanks for any ideas

Hi - he's getting the mag from the epsom salt baths only. I'm not giving him additional thru supps.. I'll go take a look at the methylguard supp and see if anything else could be the issue but I think not as he's been taking that for a while with no noticeable bad effects. It could just be the saw toothed nature of it all. I'm just sus of the mag 'cos of the timing.....

cool - thanks, I'll do that

Hi - ds is currently on the MethylGuard by Thorne so is getting the mthf, B6, B12 and TMG. He also gets additional B12. He got strep maybe 3 months back.. no strep symptoms but lots of aggression, defiance really just plain mean and horrid, hyper too and maybe some sign of a tic.. lots of spitting that coulda been tic/ocdish. Anyways abx knocked it out. Got ill again, this time no +ve swab and abx knocked it down but not out and we've been saw toothing along. We saw an increase and then did more abx and then on day 2 of this round of abx everything just went away again ...happy happy me but then added epsom salts to a bath which I don't do as a rule and had an awful day the day after. It sounds odd 'cos everyone seems to love mag but I have notiued this effect in him before.. from bad days following to not being able to go to sleep following mag in the bath. It seesm opposite to what others experience.... perhaps it is pushing stuff down stream... I'll try it again and see what happens... thanks....

Hi - I was just wondering if anyone has seen magnesium activating their PANDAS child? Could it be a methylation thing? He is homozygous for the MTHFR C677T. I only seem to recall good things being written re mag. Thanks

Hi - I think I would still check for UTI and also maybe do a stool test for c-diff (and maybe others?). When my ds4 had bad cramping pain with no diarrhea or nausea it was c-diff and we were being good about backfilling with probiotics but really upped the amount after that. mind you it didn't go upon weeign either tho' Also wonder if something else mechanical might be happening.. where the pressure of a full bladder may be squishing something. After a c-section (dd) I would get bad cramping pain every few days associated with needing to wee. It lasted maybe a year. I still get it sometimes in the a.m. with very full bladder.. the only thing I have that I know about is diverticulosis (had diverticulitis couple of years back).. good luck, hope you track it down

Thanks for the replies. As it happens dd is doing really well. Still comes into bed with me 1/2 wat thru night but other than that and the odd flicker of worry at high stress times or illness, you wouldn't even think PANDAS.. fingers crossed I didn't just jinx myself Ds 4 is the one being the nightmare .. well until a 2nd round of abx and on day 2 he just stopped again 3 days ago- hooray (again hoping no jinx). he seems way more reactive now too but we'll see. We're following the methylation stuff for both, so we'll see where that takes us. How's things with you JuliaFaith? Hope things are going ok.... thanks

Hi - I was just wondering why D8/17, only 'cos my dd does have the D8/17 marker.. thanks

Hi - sorry I normally hang out on the PANDAS forum but was hoping someone would be kind enough to decipher my dd's HLA testing. I've been to the link and read the explanation an dthink she's ok and not susceptible but would someone in the know be good enough to confirm it for me.. just too dumb I'm afraid... DRB1 03:JRFR DRB1 08:01 DQB1 02:SS DQB1 04:BD DRB3 01:XX DRB3 - DRB4 - DRB4 - DRB5 - DRB5- Thanks for any info

Hi - althought I can't comment on allergy testing, I know that for our PANDAS dd (now PITANDS really) an allergic reaction can indeed cause a flare. She has a moderately severe allergy to pistachios and cashews (needs an epipen) and when she ate a few bites of a pistachio containing baklava at a school event, she had the classic allergic response and then her PANDAS flared the next day. It was a small flare that lasted for about 2-3 weeks or so. We didn't treat with steroids or abx it just ran it's course. She did go on to have two more flares in the following weeks casued by illness and the three flares combined did cause an upward shift in baseline. She had always fully remitted before but I think that it was just 'glass too full' rather than any specific trigger/episode. So I'm afraid that for our dd anyway I have to disagree with ur dr. I think that anything that can stimulate the immune system can potentially cause a flare in a PITANDS child. Whether an allergy test would be enough of a provocation, dunno....

JAG10 - no ur not! In fact, I got as far as, very loudly saying "motherf" across a crowded peds office to our PANDAS ped when trying to discuss Yasko on the run I've just got so used to seeing it that way...

LLM - that's a fab description! Best easy grasp one I've seen so far I think you just condensed Yasko's book to one page

Hi - I know wot u mean LLM re almost getting it..I have 'aha' light bulb moments but 'cos the issue is so complex, the light flickers and goes out pretty quick 'cos my understanding is so sketchy and my memory so shot I feel like I will get there but I will need to re-read it over and over. Hopefully, the DVDs will help. As for my ped visit. She feels that B12 is fundamental if you can handle it and from what Yasko says, you can handle it if you clear the upstream blocks. For completeness we are testing serum homocysteine and histamine in both kids and doing the MTHFR DNA for me and dh, although I doubt dh will go. She said yes, add in betaine (TMG) and B2 to lower homocysteine. She feels it isn't necessary to look at other SNPs but said that was in part 'cos she doesn't know what to do with the info. She says that most/all? of her PANDAS kids have this issue upon testing and that she is seeing improvement with supplementing but didn't clarify. Not her fault but the appointments are so hectic with ds there. She would love to borrow the book and DVDs when I'm done with them. I love that she is willing to be honest with what she does and doesn't know and willing to learn more. She mentioned a product by Thorne called Methyl-guard that has the 5MTHF, Pyridoxyl 5 thingy type of B6 and TMG in one pill. She says it's the only place she can find the TMG, if I remember right. Anyways.. if/when the light finally stays on instead of flickering, I'll share my hard won knowleadge before I forget it again! My ds does seem to be doing better. Not sure if it's the ibuprofen, prevacid or the B6, 5MTHF and B12. I'm throwing everything at him I'm afraid in the hopes of getting spat at less. Oh the joys! Thanks for the continued discussion folks

LLM - that Yasko book is excellent (not got to the DVDs yet). I will have to re-read a few times to try and get a handle on it I highly recommend it for anyone looking at methylation. She goes way beyond the MTHFR gene. It really makes sense. Lots to take in and lots to try but it feels like the right way to go. I also haven't been able to understand why B12 activates some (other than the high histamine issue which I hadn't been able to get my head around fully) but she appears to say it's 'cos if you have other blocks, other than just MTHFR, then you need to clear some others first before adding B12 (amongst others) or you can make things worse. From what I am reading she seems to think that altho' the MTHFR SNPs, single nucleotide polymorphisms I think , are of issue they are less of an issue than other SNPs that she cites need addressing first. Really good explanations too of why meth impacts the immune system, metals and viral loads and even how it can skew towards autoimmune. thanks

bumping for any any ideas/info thanks

Hi - I hope this isn't abuse of the forum but I was looking for info on general supportive measures while on extended steroids and also wondering if anyone has any experience with polymyalgia rheumatica (PMR). My sister has just been given a PMR dx and has been told she'll need to be on steroids (15mg/day) for 18 months or so. Should she be taking calcium and Vit D to support bone health? Anything else? I seem to remember B12 being needed. Should she support gut health more than normal? Any info/advice would be really helpful. thanks