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Hi again.. hoped you wouldn't ask that!! I'll point you at what other folks have said 'cos I'll only confuse you. I'll stick some links in to the PANDAS forum. They've got a good fact sheet http://www.latitudes.org/forums/index.php?showtopic=6265 and FAQ too http://www.latitudes.org/forums/index.php?showtopic=6266 and link to a good summary article http://www.latitudes.org/forums/index.php?showtopic=3980 Some other good sites are the PANDAS network (http://www.pandasnetwork.org) and the PANDAS resource network (www.pandasresourcenetwork.com) and a site run by a Dr Trifilletti (www.pandas.yuku.com). I have a dd6 with a PANDAS dx and a ds2 with a possible PANDAS dx. It is so hard trying to work out what is within the wide remit of normal behaviour for a 2 year old and what isn't . Good luck. You'll get lots of good info on these forums, they've been a life saver for me both knowledge and support wise. :-)

Hi.. I usually hang out on the PANDAS forum part of this site (I don't want to be one of those mum's who thinks every child has what they're child has and labels everything accordingly!) but has your son been ill recently. Just wanted to chuck the idea of PANDAS out there as I believe the chorieform movements that are sometimes seen in PANDAS kids, will continue while they are asleep. Right, done.. sorry, I'll go lurk somehwere else. Hope you sort it all out. (PS we're fromthe uK and know the rubbishy repsonse you can get from the NHS!!)

That distinction makes complete sense to me 'cos my ds2 has done the word repeat thing before that feels like a thought process issue and the stammer thing this last week or so that feels very different...

dcmom - yeh, it doesn't feel like a tic to me either, although with the exception of our dd's few tics, I'm not really conversant with tics. I used to be friends with a stammerer and it sounded just like this. I'll let you know how it goes. Keep us posted on your dd.

Hi - we've never had stuttering before (we've had sentence or word repeating) with my ds2. Our dd6 has a PANDAS dx, our ds2 a possible dx. Dd6 has had a ramp in symptoms this week in conjunction with an acute allergic reaction AND a sore throat (so this is muddying the waters a bit). Our ds2 has had lower frustration tolerance, increased sleep problems and this stammering. He doesn't do it all the time, mostly when he's tired or excited. The 'm' sound does seem the most problematic for him but he does it with other beginning sounds too. Both kids came back negative on rapid and we are awaiting cultures. The stammering feels like PANDAS to me but, heh, so difficult to know with a 2 year old....

Hi - has anyone seen stammering in their children during PANDAS episodes but not at other times? Not word repeating but more a real stammer, like getting stuck on the 'M"' sound at the begnning of a word like a stammerer might... Thanks.

Hoping my British humour came across ok there and I'm not setting myself up for any CPS investigations.....

yeh - I find 5ml of bourbon for my ds (35lb) orally and 10ml for my dd (65lb) really works to get them to sleep. For me (weight omitted) 200ml split into 2 doses over a 1 hour period really reduces stress and aids with sleep

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Hi - I don't want to muddy the waters in any way and know virtually nothing about Kawasaki's but just thought I'd throw it out there as an option.. here's a quote re skin symptoms and kawasaki's The rash in Kawasaki’s disease can take different forms, most commonly a nonspecific, diffuse, eruption of flattened papules. The rash usually covers the entire body, including the trunk and extremities, and itching may occur. Read more at Suite101: Kawasaki's Disease: Immune-Mediated Vasculitis in Children http://autoimmunedisease.suite101.com/arti...e#ixzz0jUiVbmFT SFmom.. seems to have some good kawasaki's knowledge.. just a thought...

thanks for the responses.. it looked an interesting supplement to research some more.... and thanks for those links :-)

Hi - I've been googling candidiasis treatments for me my mom and came across berberine as an antifungal. Googling some more, I came across this article and wondered if anyone else had heard of this before or, even, be using it? Article discusses it's uses in neurodegenerative and neuropsychiatric disorders as it has an ability to regulate neurotransmitters. http://www3.interscience.wiley.com/journal...=1&SRETRY=0 It's also antimicrobial/antifungal and anti-inflammatory/reduces cytokines if I remember right. Sounds too good to be true thanks...

Hi - during our dd's 1st recognised episode she had an amox rash that we've been told shows a co-infection with EBV. We got subsequently tested for allergy to make sure and she was fine, so it was the amox reaction. We got tested for EBV a couple of weeks ago but nothing showed.. but for us nothing ever does. According to her tests she's never had a thing! The only test that's ever come back elevated is the Cunningham ones. I'd think I was crazy if it weren't for that test!!

Hi - I had the same worries when doing a 5 day steroid burst for both our dd and ds. Dd6 got 60mg (65lbs) per day end of November and ds2 got 30mg (he's 35lbs) in October (I think it was October) and neither kids got sick then or in the the couple of weeks after. I sent dd to school with sanitizer and kept 1 in the car and was extra careful about wiping shopping carts etc.

Hi - in addition to the abx and IVIG already suggested, Iwonder if it's worth looking at n-acetyl-l-cysteine as a supplement. Research has shown improvement with trichotillomania (a manifestation of OCD) at treatment doses. And I can't imagine it would hurt anything else going on. Only issue, I believe, is that it can be irritating to the stomach at high doses for some people.

Hi - you may also want to check what sealant they will use. Some contain BPA which in low doses is linked to obesity, breast and prostate cancer, hyperactivity, diabetes and other health concerns. The 'sides' differ on the safety of it in sealants but sealants without BPA are available, so I would always err on the side of caution....

Hi - I have been very much like you with the picking and also nail biting for me. The nail biting and urge to bite completely disappeared 5 days into treatment for low thyroid. But also I've read a lot about n- acteyl-l-cysteine recently and it's use for trichotillomania. Here's a copy of my post in response to JAG10 about similar propblems - skin picking and nail biting and hair pulling (trichotillomania) are all different faces of a similar aspect of OCD. The following articles look at the use of n-acetyl-l-cysteine for hair pulling and may be worth considering... http://ihealthbulletin.com/blog/2009/07/06...ichotillomania/ http://news.bbc.co.uk/2/hi/health/8132387.stm My PANDAS dd6 and possible PANDAS ds2 both had a flu-like illness last November which sparked what would have been a bad episode, I believe, if we hadn't halted it with steroids. Both kids started biting their nails the following week. Neither had been biters before. Within a week my ds had stopped but my dd continues. No other symptoms remained. (although we have since seen a ramp this last week ...) Anyway.. when we had her thyroid checked last year she was ok. When checked after the ramp following the flu, she had low Free T3. We need to discuss giving her thyroid meds with her dr. Be interesting to see that if we do go that route if her biting stops.

JAG10 - skin picking and nail biting and hair pulling (trichotillomania) are all different faces of a similar aspect of OCD. The following articles look at the use of n-acetyl-l-cysteine for hair pulling and may be worth considering... http://ihealthbulletin.com/blog/2009/07/06...ichotillomania/ http://news.bbc.co.uk/2/hi/health/8132387.stm

Hi again.. how about Dr T's new site.. is it worth asking if he would have a link on his site?

Hi - just wondered if it was worth posting this on the tourettes side too, if it hasn't been already? (and all the ACN forums maybe). Also is Diana P willing to link to it on PANDAS network and Lynn Johnson on the PANDAS resource network and maybe Beth Maloney too on her facebook. Apologies if these have already been examined as options....

Simplygina.. also wondered if you have had the cunningham tests done. A study out of Oklahoma University Health Sciences Center that looks at CaMk II activiation and anti neuronal antibodies that previous research has indicated may be indicative of PANDAS. It costs $400 but I think you could do 2 kids at the same time for that as it is towards post and packing costs. It isn't a definitive test as still in study stage but may help you decide re your younger child and may give you some ammo for your doctor.....

Hi again - it's slight but it's here. Last night my dd6 woke up twice with bad dreams, unusual but not unheard of for her. Tonight, just as she was falling alseep, she said.."mummy, I'm having bad thoughts" (meaning scary). Sounds vague but this is beginning/tail end episode intrusive thought type stuff that she gets. Just hoping it stays at this level....

simplygina - sorry, just scanned this thread before rushing out the door, so apologies if I missed something but have you had your younger son's bottom swabbed ever? just wondering if those rashes could be strep...

Hi - both ASO and anti DNaseB are antibodies produced in response to exotoxins of streptoccocus this link is a good discussion of ASO, antiDNaseB and PANDAS http://www.latitudes.org/forums/index.php?...st=0#entry29305

Hi - my dd's 2nd bad episode was the worst for me to deal with 'cos she was really oppositional and combative (not physically although there was some physical posturing like drunks do.. bumping etc) and her sleep was terrible. We would be awake maybe 2-3 hours every night, having spent forever trying to get to sleep in the first place. Unfortunately, we only recently discovered melatonin but it works a dream to get my 2 kids off to sleep. They get it 1/2 hour before bed and go out like lights. It won't keep my terrible sleeper son asleep (he still wakes maybe 7 or more times a night) but it does buy me 3, sometimes 4 hours during the evening which I didn't get before. Many people use valerian or GABA but it had a paradoxical effect on our ds and made his sleep and behaviour worse.... (oh yeh, we use the 1mg melatonin lozenges for both our 35lb ds and 65lb dd).