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If you want to be sure you're not dealing with the herpetic whitlows, you can have a scraping done. I was convinced that mine was h. whitlows despite looking like eczema (cos it came on in adult life and after I had used a rubber finger at work for counting and spread from that 1 finger to others) and having an allergist tell me it was def. eczema. But mine can hurt and Dr Bouboulis told me if it hurts, its whitlows and I think he's right. Unless of course, you have a secondary infection going on 'cos of bad eczema... My ds2 had it for about 3 weeks and if it comes back I think we'll get it scraped to find out if it is vira,l as we suspect. If it's the whitlows, I believe stress will bring it on or other illness bringing the immune system down allowing it to flare. Supposedly if it's the dishydrotic eczema then it is contact allergy, often nickel which is found in many coins and jewellry amongst others. However, I have seen other triggers listed for this type of eczema including sunshine....

Hi - we see Dr Cynthia Keller atRredmond Pediatrics as our ped and when we tried to see an immunologist at seattle's they saw the PANDAS dx and told us we were in the wrong place...great! So we did a telephone consult with Dr Bouboulis. Our ped is great and has an increasing number of PANDAS patients.. she really gets the severity of this disorder, is willing to think outside the box and learn and is very knolwedgable....if you can get to see her, if you don't already, I'd recommend her as a great local dr. She does abx steroids and ivig. and seems to be really progressive with regards to supplements, diet modifications and allergies. We've been really pleased with her response. good luck...

Hi - you may want to look up herpetic whitlows and dishydrotic eczema.. both of which can manifest as little bumps on the fingers. Herpetic whitlows in particular can show as small bumps on (usually) the first or second joints. I've been told if they itch then it's eczema but if they hurt then it's herpetic whitlows.... of course it could be somthing else altogether but worth a look...

Hi - What I could understand of this article was interesting. Someone more scientifically minded might know how much bearing it might hold for future treatment possibilities for PANDAS. Reactive oxygen species alter brain endothelial tight junction dynamics via RhoA, PI3 kinase, and PKB signaling http://www.fasebj.org/cgi/content/full/21/13/3666 Also quick question on this topic for those with good brains/knowledge... If you have crappy endothelial tight junctions in your BBB might it hold that what is causing a problem there could also cause crappy tight junctions in the GI? So like a double whammy .. bigger than usual molecules getting through there and also at the BBB? I was thinking more for those who have issues(eg on the autism spectrum but not exclusively) with, say gluten and casein.

This is a good article if anyone is getting a "no" from a local dr to abx 'cos of developing resistance to abx in general.... http://www.ecmaj.ca/cgi/reprint/159/9/1129.pdf from the Canadian Medical Association.

Momto2pandas - I'm so very pleased for you and your children :-)

Hi - (unless I'm mistaken) this isn't a study by Swedo but came out of University College London. I also seem to remember an earlier thread regarding this study and discussing its shortcomings but can't find it now.....

but, I wonder if it could be exposure to bacteria or viruses that the mother and, consequently, the baby within the first 6 months or so of life (due to maternal antibodies) aren't used to.. is there such a thing as local strains.. I'm assuming there is... I know there is with strep. dunno, just a thought.... http://news.bbc.co.uk/2/hi/health/8690683.stm

Hi - our dd had a severe dairy allergy from birth until 3. At her allergy check up at age 3 they skin pricked her for milk and came back as all clear but I know for a fact that for about 6 months after she would react to milk... she wouldn't have the full blown anaphalaxis that she had previously but her mood would drop and she would act out and this wouldn't be a delayed reaction, it still came on fast, just behaviourally. I don't trust skin prick testing.. I feel it misses a lot of allergies unless they are the full blown, life threatening kind.... If you want to pursue the allergy route, perhaps you could find a doc to do blood IgG allergy testing. Most allergists don't rate it 'cos of false positives but perhaps you could use it as a starting point for an elimination diet, just eliminating any that show in the test, re-introducing them and using what you observe in your child to determine which of those are real allergies and which ones are the false positives... good luck...

Hi - I agree with Stephanie2.. listen to your gut, not anyone else. One plus point (if that's possible with having 2 kids with PANDAS), is that our dd6 was glad to hear her brother has it 'cos now she isn't the only one in the family with it and as he's having some issues currently, she's understanding of the problems he's having.

Hi - my dd6 gets a lot of night terrors when in episodes. I find ibuprofen really helps (unless she is in the middle of a real bad episode and then nothing but treating and waiting for the episode to lessen will help).

hi - could you phone consult with one of the experts such as Dr Bouboulis or Dr Trifiletti?

Hi - I don't know if I'll be much good cos OMG how I 've vaccilated on this one.. but here's where I try to stand on this if if my own temper/patience will let me. When my dd first showed signs of PANDAS I would try and be firm and make my dd follow thru/do as told/stand my ground etc. I don't feel so strongly about it now. These kids are ill. I don't believe in letting my dd or ds rule the roost but if they are in an episode and clearly exhibiting PANDAS behaviours I ask myself if I would punish or reprimand a tic. Does the behaviour feel as out of control for your dd as a tic would .. if it does then to some extent I would let it slide. I understand that you don't want to reinforce OCD behaviours or create a monster but if your dd is behaving well for most of the day and only letting rip a couple of times a day I would take the easy road for you and her while she heals and treat it like an uncontrollable behaviour... If you're worried about setting precedents could you talk to your dd when she's receptive and explain you're going to let her do this at times now but not once things get back to normal and why? I really don't believe they are intentionally being naughty any more than a child will intentionally tic and I know how OCD behaviours in particular can be residual but this temper/frustration tolerance stuff, certainly for my kids, totally disappears once they are well again (until next episode...) and for your dd it doesn't sound OCD ish but more like frustration tolerance. I've been reminded of this just today as both my kids are ramping up into episodes and ds2 just went "naughty" for the whole afternon. Hyper/defiant/toddler aggressive and I played it completely wrong. Treated him as though he was well and the rest of the day went to s*** from there. If I'd pulled my horns and let it slide, he'd feel better/calmer, I'd feel less guilty and nobody's head would have fallen off for him not following normal family rules for the day. Here's to hoping I learn my lesson for tomorrow (and that I also get the ibuprofen out of the cupboard sooner). Good luck..

Hello Our dd6 (65lbs) got 30mg twice a day for 5 days no taper. Our ds2 (33lbs) got 15mg twice a day for 5 days no taper.

Kimballot - she was using the 1mg but I know from chemar's posts you can get it in the micrograms, so I may try using less like you suggest.. it would be great to still have it in the arsenal. When she has super minor flares, we have some worries at bedtime just before falling asleep and the melatonin doesn't allow enough time for that to happen thanks for that idea.. so far I'd been too dumb to think of that ( I do tend to be an all or nothing kind of gal ).

Hi - melatonin has also been great for us to get ds2 and dd6 asleep quickly but 1 thing I've been noticing with dd6 is an increase in bad dreams and it seems to coincide with her using the melatonin. I give it to ds nearly every night but only occasionally to dd and on many of those nights she has more vivid dreams and if they are bad she wakes up and finds it hard to go back to sleep, which usually isn't a problem for her if not in an episode. Still using it for ds but leaving it off for a bit for dd to see if the dream increase/recall increase stops.....

Oh, absolutely. I think as a group of parents and now also the drs, we're seeing that the PANDAS net is huge. I mentioned the stuttering issue to Dr T who said that a number of parents had seen this issue and I believe some saw improvement or it stopped with abx and also he has had similar reports from speech paths. I think that is just 1 of very many different ways that it can manifest itself. The original Swedo criteria is IMHO only a narrow description of PANDAS. I imagine we'll see that it can be the whole spectrum from mild to extremely severe and will embrace many manifestations.

Hi- Our ds had just turned 2 when we did the cunningham test on him. He had a CaMK score of 151% and his anti lysoganglioside was elevated (normal <320 his was 640). His sister 6 has PAND(AS?). She is very classic in her presentation - sudden onset with OCD (primarily), behaviour , sensory, sleep and cognition issues, some ticcing and some choreiform movements. Good ressponse to abx and steroids and full remission between episodes. We had our ds2 tested 'cos I'd seen some soft signs such as super lively, more defiance than normal for a 2 year old, TERRIBLE sleep, some word repeating, sensory issues etc. We followed the test with a steroid burst and saw an improvement in behaviour and a marked improvement in sleep. Even after this I still wasn't totally convinced but now I feel sure that he has PANDAS. Recently he started stuttering. On the back of a mild flare in symptoms in my dd6, both children had a course of zith (they are both on twice weekly proph zith). My ds2's stuttering stopped dead on day 3 of the abx and stayed stopped for 4 weeks and has only returned minimally this last week, at the same time as he has developed a cold. Also during that 4 week period my normally somewhat tricky to parent son has been a toddler dream :-) His behaviour tanked a bit this week but seems to be righting itself again. If it hadn't been for our dd, our ds would have totally gone under the radar. I believe his onsets have been as sudden as our dd's just not as severe but only not as severe 'cos we have got on top of it early. I suspect that all kids have an original sudden onset just some of those onsets will be mild and so early in development that parents either write it off to normal little kid stuff or just their child's personality. I now firmly believe his 1st episode was at 7 months. This was during our dd's 1st recognised episode. He, overnight, went from happy to be left propped and playing to uber sepration anxiety. I couldn't be out of site or many steps away at all. I put it down to normal developmentally appropriate seperation anxiety. At the time, I thought it was fairly sudden and severe but reckoned it had been spurred by the attention his sis was getting. Now being able to track this and other behaviour changes with time and illness, I know better.. I don't think "mild" and "PANDAS" is a contradiction at all... it's just that the bad cases are those that get recognised. How many children are getting written off as bad, difficult or naughty when really they're just ill?

excellent.. wot a great segment!!

And hey, if not already, you could always find religion of the non vaccinating type..... ways and means...

Hi Faith - I'm not sure if schools will accept titers. I don't see why not if you could get a dr to write a letter quoting the test results.. it's the coverage that they require so i don't see why not. We haven't had to worry about it 'cos we live in Washington State which allows a philosophical exemption in addition to medical and religious. Dr B said to me (when talking about our dd6 and testing pneumococcal titers and her not being vac'd with Prevnar and me not wanting her to be) that he wouldn't recommend vaxing a PANDAS child. I hope I quoted him correctly and aren't getting him in trouble but if that's his opinion then if someone wants out and needs a medical exemption then maybe the PANDAS experts would be willing to write the opt out letters...

Yeh, my dd6 is super brave and watches the needle go in etc.. got a hard gene from somewhere (don't think it can be mine) but now she's learnt to milk it as I once said the more it hurts the more chocolate she would get. So now we get these feeble, b movie quiet moans and sad looks in my direction and some very confused phlebotomists ...gonna have to change the pay off in some way.... Also used ibuprofen on ds2 today and it really seemed to diminish the stuttering.. almost stopped it. I've never really found ibuprofen has helped my 2 previously but seemed to really work today for ds for his mood and tolerance too.

Hi - we have only minimally vac'd my dd6 up 'til now and now won't be doing any more at all.. only exception being the tetanus as she rides and animals are a big reservoir supposedly and for some reason tetanus frightens me when the others don't so much. Dr B said he wouldn't be recommending any future vacs for her. Tetanus is the T part and also the D part of DTP or DTaP as you can't get tetanus without the diptheria bit or so I've been told by state vac folks and many docs but if anyone knows different, I'd be interested. So in a bit of a quandary as to what to do.. we got her titer tested for tetanus and she is borderline for coverage and our (increasingly) probable PANDAS ds2 has had no vacs but I feel similarly about tetanus for him and feel he needs it......

Hi - just thought I'd mention that for me I seem to need to click 3 times. I click it first, then get the facebook sign in option, Sign in to facebook and then click the "vote" button again and for some reason it doesn't accept that click and I need to click again before it ackonowledges my vote and asks if I want to spread the word. just thought I'd mention it in case we're missing votes that way. thanks for all the hard work on this.......

Glad to hear things are going well. With your older child ( i know it's only 7 days out, mind you) but have you seen the turning back of pages so often talked about? What's your timeline for doing more IVIGs with your younger child? Will you wait 3 months or go sooner?