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Hi - just wanted to mention my experiencet

bumping for more ideas

Hi - have a look at this case study, only 1 child but recent (2010) and cites 3 months, successful treatment http://turknoropsikiyatri.org/PDF/2010/haziran/169-170.pdf

thanks for looking... I think I get the ANA stuff , I think, just wanted to make sure that what I told the ped about CaMK wasn't a crock ....

Peglem - if it's a measure of activation potential does that mean if, like my dd's numbers, you have high CaMK (in her case 165%) but no anti neuronal elevations, something else maybe casuing hte raised ability to activate CaMK? Or is the antibody that raises the child's ability to activate, not one of the anit-neuronals reported on by Dr' C's test? (She did have a rasied anti-lysoganglioside a year earlier, done thru a different lab..) God, I hate this disorder, I thought I had my head wrapped round it, at least a bit, a year or so ago but feel like I'm wandering in the wilds now..... oh well, onwards and upwards

cool.. thanks.. so the picture I have in my head from Diana's memo is of neurons happily cupping hands until a PANDAS child's blood (or components of) are introduced and the neurons then becoming chaotic.. so if I understand it right, the CaMK doesn't create the chaos, the antibodies do but this chaotic behaviour will then produce elevations in CaMK which messes with the neurotransmitters. So if a child only shows elevations in CaMK but not in anti-neuronal antibodies, can there still be disturbance caused by the CaMK itself? Here's the bit from Diana's memo "She explained that when the neurons are healthy and happy, they cluster together gently and “hold hands” in nice, orderly groups. When a PANDAS child’s blood is placed with these healthy neurons in a container – they begin to move rapidly in a very random fashion – and the “cupped hands” literally assault each other. There is disarray and confusion. This disarray and confusion of movement is then measured by very expensive machines that use some type of radioactive light rays to physically measure the activity. She wanted us to understand the following: the CaM Kinase and anti-neuronal numbers are tangible physical movements. It is a display of the potential disarray occurring in our children’s brain mentally, physically and emotionally. It was dramatic to see the “microcosm” of this illness." I told our ped that CaMK wasn't just a marker for PANDAS but part of the cascade that actually causes symptoms... was I wrong to tell her that? Sorry I'm being dumb here.. we're off to see our ped tomorrow and I'd like to be able to tell her if I got that wrong... thanks

Hi - just wondering if someone can clarify something for me... my understanding (I think based on a memo that Diana Pohlman circulated and which was also posted on here, recounting her visit to Dr. Cunningham's lab and seeing a PANDAS child's blood in action under the microscope) was that the CaMK itself causes the neurons to behave chaotically and that it isn't just a marker. Having re-read Diana's memo, I'm not sure she says that. Can anyone tell me, is CaMK just marker or part of the problem? Thanks

Dr T recommended we use clindamycin 5 days prior to and 5 days following dental work, as he would use clindamycin for T&As. Although, I don't know if the time you would take it would be increased 'cos of the more invavsive nature of a T&A...

Hi - sorry, we've only had experince with the OTC stuff and supplements .... but here it is you've probably read but thought I'd mention it again, many people get some relief with ibuprofen. I didn't use to think it helped us but when I did full daily dosing it did help to take the edge off things. GABA also works for some, it has a similar action to valerian, I believe. Also, our ped recommends curcumin with pepper supplements for the anti-inflammatory properties. The pepper ups the action of the curcumin.

nancy - hi, yes my dd's cortisol levels were low through all four testing points in the day and my ds' were low in the am and raised at night. Ds also had off the lab's scale high DHEA (still can't find much on that except virilisation and hirsutism in women - he is uber boy) and both kids had low 17 OH progesterone.. again not sure what this means. When researching adrenal fatigue, especially thinking of dd, many of her symptoms that we put down to PANDAS, crossover with low cortisol, so we're hoping that some of what we see may be fixable if we can better support their adrenal function. Night waking, difficulty falling asleep, night stomach pains and nausea, even anxiety,can be adrenals. Se has PAND(A?) but she has historically remitted very well with abx and steroids but not so much this time. A recent steroid burst totally got rid of the OCD we were seeing,within 24 hours of the first dose, but sleep issues and anxiety remain. Just wondering if PANDAS directly messes with the HPA axis or if the stress of it all has just shot her adrenal efficiency?

peglem - yes it was .. here's the bit re the conference "Our panel presentation went beautifully. Dr. Nicolaides was truly moved to see the way my book has affected so many families. I was able to pop into most of the other presentations. It was disappointing to hear Dr. Kovasevic forcefully assert that antibiotics do not work for PANDAS, and that the only solution is IV Ig. As we all know from Sammys experience that is simply not true. And the limited efficacy of IV Ig as a treatment has been repeatedly confirmed via parent emails. The problem is not the failure of antibiotics, but the failure of physicians to prescribe them appropriately long-term and in sufficient dosages. A top-secret medical conference about PANDAS wrapped up at NIH today. Its one of the worst kept top-secrets ever. It was mentioned in every single presentation at the OC Conference and has been talked about for months. Ive never understood why all the attempted secrecy, and no one seemed to be able to articulate the goal. Perhaps there will be a consensus that PANDAS exists. I guess it would be nice if the Non-believers finally caught up with the rest of us. But personally I could not care less whether Harvey Singer or Roger Kurlan (page 201) are ever on board. The train left the station quite some time ago, and we seem to be whizzing along just fine without them."

you delivered it well tho' (in fact, I was just about to edit my post in case it looked as tho' I thought vaginal yeast is funny..... just the delivery..)

hijacking again, sorry, but.. peglem! You're brilliant. Your "giddy" post had me nearly in tears feeling happy for you and your daughter and now outloud guffaws at "vag-on-fire". Thanks for the katharsis

I had the pleasure of talking to Dr Leckman when we first learnt of PANDAS a couple of years ago. I rang his office having seen him mentioned on the internet and he was kind enough to spend well over an hour on the phone with me just discussing PANDAS. He was very humble, gracious and generous with his (unbilled) time and truly seemed to care. I really, really liked him.....

yeh, I've always been a mouth first, brain later person. It often gets me in trouble.....

slighly off topic but in the vein of wot we bribe/offer our kids.... during a recent exacerbation my dd's fear of spiders hadincreased and when one walked across her pillow at bedtime one night, she totally freaked and wouldn't stop. refused to get back in bed, wouldn't sleep in the room, "more may come" etc. So, I bet her that she wouldn't have another spider walk across her pillow before she was 12 (7 now). If it did I promised her (very rashly but I was panicking myself at this point as bed and sleep are sore spots on our household, as they are in many of yours, and I am desperate to hold on to the little space, peace and sleep that I do get) that I'd give her 100 bucks to spend on toys. Well bugger me if 2 spiders didn't run across her bed about 4 weeks later the same night about 5 minutes apart! I had to cough up or she'd never trust me again. She slept that night, baby continued to sleep but it cost me dearly

EAMom - I hate to think wot the other clindamycins are like 'cos our dr swears this is as good as that stuff gets...next time we have to have it, I'll pay my ds with more M&Ms.. he deserves them

Hi - if your kids need to take clindamycin, get the dr to rx cleocin. According to our dr it is the best tasting one (after much trial and error) and my dd7 says it wasn't too bad and my ds2, who spits the nasty ones out, was willing to swallow it if I promised him an M&M at the end. And only 1 M&M so it couldn't have been too bad if I could bargain so cheaply. It does still smell gross tho'

hi - we just got adrenals tested for both our kids and they both have problems. Adrenal problems can really impact sleep, especially mucked up cortisol rhythm.. difficulty getting to sleep, staying asleep and also waking up. I am wondering if PANDAS can affect the hypothalamus directly or via the basal ganglia and thus mess with the hypothalamus-pituitary-adrenal axis or if just the stress of this disorder may be the culprit. Anyways, if it is adrenals, then things can be done to help get the sleep back on track...

Hi - we are having a similar problem. My dd7 slept with me until just after her 4th bday. I was happy with and encouraged it, she had alwsy been a bad sleeper - 1 hour plus to fall asleep with me at her side and many night wakings and so I was super smug when at 4 she happily transitioned to her own bed and stayed there all night. (I also did a few internal hand gestures to all those who said I had done it wrong and would never get my obviously overly dependent child out of the bed ). I too was ready for a bit of space but just swapped her for my new baby son, who unbelievably is a worse sleeper, he goes down quicker, especially with melatonin, but wakes so very often (anywhere from 5-9 times a night) and is a super light sleeper. If I turn over he always wakes. Your dd8 waking with the light click is so like my son now and how my dd used to be. My dd has always had sleep issues with exacerbations but always managed to go back to sleep in her own bed and all issues have resolved once out of the episode. Not this time around. We had a flare recently, mood, fears, sleep problems, stomach issues and some OCD. We did a steroid birst and everything else has gone but not the sleep and some minimal seperation fears. She wakes sometime during the night in her bed and then is too scared to go back to sleep. The 1st night it was bad like this I proffered a spot on the floor in my room but she was too scared there and had to come in bed. Trouble is she sleeps well once in my bed but I and ds sleep terribly 'cos her movements keep waking him up. I'm dead on my feet but can't see a way of getting her out. I too feel frustrated and can't get her fear but it is real, she really is too scared. Sorry I can't offer much advice just a bit of 'misery likes company'. But... Have you tried tv in a bedroom they share. Could they share a big bed together. Could you bribe them with something enormous they really want to try tv and a shared bed and then really dose your dds with melatonin. Could you get a lamp with a dimmer switch that won't click. Could you try some white noise stuff. When my dd went to her own room we got a fish tank (but you can get cheaper noise machines)to provide a nice background hum, flatten other noises so they won't wake her and give her something alive in her room so as not to feel lonely. If you could maybe get 1 night under your belt or at least a falling asleep it might get the ball rolling. We have also just done adrenal testing on both our kids and they both came back with off numbers that could well be impacting their ability to fall alseep and stay alseep. We're off to discuss supps etc to right the issues and hopefully it will help with sleep. Also, are you confident that the benadryl works. I remeber readin soem fairly new research that said it isn't the unusual kid that has a paradoxical reaction to benadryl. In fcat , the study showed 70%-ish of kids slept more poorly after having it. good luck.. I know how you feel, the frustration and desperate need for just a tiny bit of your own space and time...

voting and bumping

Sorry - I don't know enough about any of them to comment.. hopefully others will have an idea.. good luck at pinning it down

hi - just curious but what is the plus part.. may it be something else in there and not the GABA that is an issue?

Hi - we tried gaba for our ds2 and got a paradoxical reaction. He became more difficult to handle and much worse tempered. Valerian had a similar effect. We tried both a few times to make sure and always got a negative reaction.