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Hi - just an aside on the IgG allergy testing.. you'll find that conventional immuno drs hold no store whatsoever with IgG (in my experience) whereas naturo and integratives hold way more with some really putting store in it.. when listening to both sides and also had a couple of middle of the road drs agree - what seems to be shown by IgG is indeed normal folks reaction to foods but that some people do actually show higher lab results to certain foods than other folks and this could be that, yes, they stuff pizza like there's no tomorrow or that their gut is leakier than other peoples. So, what high IgGs, and many of them, may be showing is a particularly poor gut barrier and yes while this is a 'normalish' response, if you're trying to lower overall imflammation, getting those currently offending items out of the diet or lowering the amount ingested could help with sytemic inflammation until you get the gut back in shape and doing it's job.... difficult bit is.. I read an article by somebody at Bastyr University where they sent some blood to various labs, did it blind and double sent to look at the results. If memory serves they did three labs. Only one got close with results on both occasions. basically the other two labs sent differign results on the same blood. We still went ahead and did IgG for both our PAND(A?) kids. We got some super highs and some other middle ones. We knocked ou tthe super highs and lowered the amounts eaten of the lower ones but only while we worked ovdertime on their guts and then added it all back in when GIs looked better. Sorry.. one more aside :-0 I've also read that if you have history of in the family or know for definite you got a celiac gene, then you should probably avoid gluten if you got a crap GI and after a stomache flu etc...cos same applies.. stuff gets thru giant gluten proteins trgeer the inate genetic susceptibilty.. dunno if it's true but it made sense when I read it...

Hi - bit of an aside but I've read that you can't clear mycoplasma without sufficient selenium levels... may not help but could (god knows why u need selenium to clear myco) but can't hurt.. really good and easy way to supplement is brazil nuts, if not allergic. 1 or 2 is enough per day, in fact you gotta be careful with brazil nuts 'cos they are so high in selenium you can easily overdo it if eating too many too frequently....

Hi - we have used steroids bursts for 5 days (60mg per day) for our dd8 twice. Both times gave great results. Ist time it knocked OCD on the head in 12 hours of the 1st dose and remaining symptoms (tics/behavioural/anxiety/sleep etc) by day 3. The second burst got rid of all the OCD again within 12 hours and very much lessened all other symptoms but not to the extent of the 1st time. Both bursts had lasting effect until the next trigger. No rebound. We have used the same 5 day burst (30mg per day) on ds then 3. We saw only minimal improvement in behaviour but massive improvement in sleep. This only lasted for the length of the burst plus a few days for him but was as much diagnostic as treatment for him. Again, no rebound noticeable. I absolutely would use them again if we tanked badly but wouldn't for lesser flares as dd put a lot of weight on and kept doing so well after the bursts. She just got massively hungry and kept eating. Good luck...

Hi - was wondering if you'd conmsidered hashimotos which can cause hypo thyroid with bouts of hyper and can present with something called Prasad's Syndrome that causes mania and screaming jags.. don't know much about it but remembered reading about it when you mentioned Allie screaming a lot... really hope things settle down for you.. good luck

cyndylynntk -hi - we are with dr keller in redmond, near seattle for both our PANDAS kids. She has never prescribed long-term treatment doses for our kids, just short-term but did prescribe long-term prohylactic abx. In our experience, she is super willing to discuss treatment and try options that the parent proposes. She has also been willing to work with other PANDAS drs, in our case Dr B and Dr T and a local integrative dr. I love her... can you tell? She really gets it, the disorder, its impact on the child, main caregiver and family as a whole. I've found her to be very pragmatic and willing to think outside the box.

Hi - our normal ped noted an arm tremor in our dd (then 5) in both arms during her 1st recognised episode. I wouldn't have noticed it unless she had said. We did nothing at the time specifically for the tremor and it went away when that episode ended. Dr B later said that he thought it was due to excess dopamine and just another PANDAS symptom... She doesn't seem to have had it in any subsequent episodes....

thanks.. looking forward to hearing your progress :-)

momwithocdson - could something else be driving the histamine production? Could it be environmental? Are Summer and regular school in the same buildings? Could mold be playing a part? Are they very new buildings with lots of VOCs maybe? Both near large water bodies? I read a really interesting article about cyanobacteria (blue/greeen algae) and the increased rate of ALS and alzheimer's and other degenerative disorders closer to bodies of water. Got me panicked 'cos dd has a fish tank in her bedroom.. that baby is going :-) Just got to get rid of it without a meltdown. Just wondered if it could be environmental....

Hi - yeh, I'd been wondering similar after reading how you can re-seed guinea pigs for eg by giving half a dropping mixed in fluid, not suggesting, obviously but you get the picture and seeing the research someone posted re: mice changing their behaviours if given gi flora from other mice.. Can't remember if the research posted looked at whether the behaviour changes in the mice remained following a longer time period. Would re-seeding a person last or is there inherent differences not just in flora but perhaps in other bodily processes that would make any benefit time-limited? pandas16 - is my memory right, it's you that's doing the pig whipworm therapy? How is it going? thanks

Hi - we're originally from the UK now in the US with 2 PANDAS kids. I asked our PANDAS Dr here who we should see if we ever find ourselves back in the uk and he mentioned a guy at St Barts in London Dr Gavin Giovanonni. Here's the link my Dr gave http://www.bartsandthelondon.nhs.uk/forgps/handbook/consultant.asp?cid=454&tt=2&sid=32&pid=7687 He also mentioned a Dr Mary Robinson in London but I couldn't find much on her and never pursued either as we haven't needed it, so can't say how good either are or if they even treat. You could look at a Lyme Dr... one of the LLMD's that has had the specilaist Lyme training. Even if Lyme isn't an issue for your child they may be better able to explore infectious causes and be more open to the idea of PANDAS/PITANDS than run of the mill Drs. Our ds3 seems to be just PANDAS but our dd8 seems to be PITANDS (although we still say PANDAS out of habit). Our dd8 appears to have been initially triggered by strep but now she will react to other infections too and even had a flare following an acute allergic reaction to a food. Good luck in sorting all this out. I'd be interested in which drs you see and if you manage to find any that really get annd are willing to treat PANDAS/PITANDS.

lynn - my dh sounds very similar to your's. He absolutely believes in PANDAS and is on baord with dd dx cos he couldn't be.. it was so sudden and awful the first time and responded so beautifully to abx. He is skeptical of treatment and drs and is also my BS detector!! But too much so.. mind you perhaps I hope and believe too much, so it may not be a bad thing. I've also seen my alcohol intake rocket along with troughing everything in sight like a truffle pig... Anyways, he's agreed to start abx tomorrow, so that'll do for me... Just like everyone else here, I'll just get my head down and get on with it! :-) thanks for all the advice

Hi - yeh, it could be another illness. It could also be an amoxy rash which isn't an allergy as such but, as was explained by our immuno dr, the immune sytem sees an illness (often mono) and abx and gets confused and produces hives. This isn't an allergy and doesn't always preclude the further use of pens. It could be a true IgE mediated Type I allergy. Or it could be a serum sickness like reaction, which is less common but what our dd had. It is a Type III hypersensitivity and does preclude further use of pens. The reaction can take up to 3 weeks to resolve, tends to come on later in the course of abx and the hives instead of coming and going over a 24 hour period, changing where they are, stay in one place and become bruises. You also get joint pain with serum sickness and can have involvement of other organs. The hives are really vasculitis caused by deposition of immune complexes. I doubt it's this, as it is far less common than the other things it could be, I just wanted to mention it for completeness.

thanks dcmom :-) I find staying calm so difficult these days but you're absolutely right. I walked away.. fumed, then came back outwardly ;-) calm and he is happy for me to dose him with a course of abx but won't go to the drs... that suits me. I'd rather he not take 'em if not needed but if it's that or nothing, I'll take it. PANDAS really does wreak havoc on a family.....

good idea, thank you :-)

Hi - this is all anecdotal and my own supposition but based on what I have seen in my kids ds3 almost 4 and dd8, both with a PANDAS/PITAND dx. I strongly believe that my sister, my husband and his sister all had PANDAS/PITAND as children. Both my sister and sister-in-law still exhibit OCD tendencies and would perhaps just squeeze in with a formal dx. Both also have other issues that I would attribute to lingering PANDAS or PITANDS. My dh's moods (and they can be both mercurial and difficult to deal with) come in waves which I am only now just linking to illness in our kids. I thought it was the stress but when I look back over our years together before children, I can see a similar pattern. I think people can appear to outgrow it and some may actually do that. I suspect what is more likely is that symptoms lessen, symptoms become the norm for that person, they have fewer exposures, deal with them better. The immune system settles some but I fear that for many they never truly outgrow it, although, it gets far easier and less noticeable... just my opinion....

I am just so angry.. I want to cry We have a ds3 and dd8 both with a PANDAS dx. 8 days ago we got a positive strep test on ds3 with a rapid. Ped swabbed dd8 and me for a culture which came back negative. Ped recommended dh get swabbed. I was already going to ask him to go in. Ds3 had no strep symptoms just a flare in super aggressive/defiant behaviour. Well long story short dh complained about having to go for a swab, finally agreed, I made appointment for today, dh says can't be bothered, didn't go to appointment. He is on board with dd8 dx, wasn't with ds3 but is more so now that he can see the huge/horrid aggression but is saying things like 'well what about false positive for ds' and etc. I went thru the responses for those. I know he has trouble dealing with them being ill all I am asking is one quick swab. How do I deal with this? Sorry to vent.. any ideas welcome.... thanks

Hi - We had something happen that got me wondering about histamine too Dd8 hasn't been symptom free for about 15 months except for 2 glorious, totally symptom free weeks that we couldn't seem to correlate to anything . The only possible initiating event that I could think of was an acute allergic food reaction followed by an adult dose of benedryl. The last time she had an acute food allergic reaction it caused a flare but wondered if either this time the benedryl kicked off the improvement or if the immune provocation caused by the allergic reaction somehow kicked her system into touch and maybe fought off some low level simmering infection.. who knows.. Anyways, it was enough for our PANDAS savvy ped to suggest a 2 week trial on benedryl. We haven't started yet as ds3 has strep and much increased aggression.. joy.. and we're all on abx and I don't want to rock my dd's boat with strep in the house.. but will post when we try the trial of benedryl with any results we see..... We also had our longest period of symptom-free despite quite a few illnesses in dd about 2 years ago after she had serum sickness and had to be on piggy-backed double-dosing of both benedryl and zyrtec for 3 weeks 'cos of the serum sickness. We had 7 really good months. Not one PANDAS symptom despite colds, fevers and stomach issues and my dd can react to all sorts of infection not just strep.. so maybe that was the anti-histamine too.....

Hi - there was a thread askig the same question some time back with similar responses. You can experience more vivid, sometimes scarier dreams when taking higher doses. We use melatonin for both dd and ds but I may try and wean ds off as the only really worrying side effect that I read about was lower sperm count and motility in men. Most of the men in the study saw a return to previous counts and motility but some had continuing issues despite discontinuation of the melatonin. I haven't got the study to hand but if anyone is intereted I could go search again for it.. let me know if you are......

sorry I meant to put in a link to the book.. sorry.. too dozy :-) http://www.amazon.com/gp/product/1439232628/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=1419674994&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0EY7Q56X2ME4Q3NXP33C

Hi I read this book about transfer factors it was very good and informative plus a great, easy to understand description of the immune system and the various aspects of innate and adaptive immunity. We decided not to pursue transfer factors at the moment 'cos from reading about them they appeared to induce a T reg shift (T1/T2) which we probably want but do so through the adaptive system and we aren't ready to mess with that just yet.... but yes the idea is you innoculate cows with whatever, candida say or any bacteria/virus etc and then use the colostrum those cows produce to not only create a response against that antigen but also to help shift the immune response away from auotimmune promoting.. I hope my understanding was correct :-) It was a good read. Certainly worth it if you're thinking of using transfer factors.

hi - I did 'none of above' for dd8 'cos we fit graph 1 for the first 4 or 5 episodes, fully remitting between episodes but now we no longer remit fully and our baseline is very slowly shifting upward. I didn't vote for our ds3, didn't kow how to vote twice but he probably fits graph 2 but more mildly, maybe. It's difficult to tease out what is his natural baseline and PANDAS behaviours as he got ill so young.

hi - I too felt as though I had PTSD. We had lots of night issues when things were bad, and still do but easily manageable now, but for maybe 18 months the slightest sound at night would have my heart pounding out of my chest. I also find myself getting hugely angry with my dd when I shouldn't and feel it's my response to the intense fear that I feel if I see a new PANDAS like behaviour or surfacing of an old one and I really have to try and control the level of anger. Not always successfully. I'm a much angrier person now, lots held inside and am sure that's PTSD. Time has seemed to help but it still feels as though it's just below the surface waiting to pounce again and although i've always been 'pleasantly' comely/chubby :-) I can't seem to keep my hands off food and again, I'm sure that's a response to all the emotional turmoil thats left and not dealt with.... I haven't done this but I suspect seeing someone to talk it out would be helpful. Difficulty maybe in finding a therapist that believes in PANDAS which for me would be a must. I think I'd find it even more depressing and stifling talking to someone who doesn't get it despite their professional attempt to seem like they do.. you can always tell, I think.... It isn't the big guns you need but I find that the Bach Flower Remedy called Rescue Remedy helps take the edge off sometimes..it could be placebo but it does seem to round the corners for me... Are you near a PANDAS support group? Would talking about your needs/emotions with another parent, one-on-one, instead of PANDAS or the needs of your children/family help. I think we all, unbderstandably, get so caught up in our childrens' illness that we get lost on the way. Hope you find a way of dealing with this as quickly as possible.

Hi - for us the first two episodes were the worst but each subsequent episode, from about the fourth episode on, left us with some lingering symptoms. We haven't been symptom free for about 14 months. Prior to June 2010 we always got back to a symptom free baseline. Our first recognised episode was 2008. Our dd has had flares in response to strep, myco?, other viruses, baby teeth falling out and an acute food allergic reaction. In the early days abx, time and steroids would do the trick. Now it appears that it has to run it's course and proph abx didn't seem to help us much more recently. She is now on no abx at all.

Buster - do yo mind me asking where you are at the moment symptom wise, % baseline etc and what you are currently doing? thanks.....

When reading about serum sickness, I never came across ziith being one that did this but hey my reading and knowledge of this issue are probably seriously lacking :-)