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Dr. T - that's gotta be one of the best things I've read recently. With the "exorcist variant" and the Anti-Christ, I'm seeing a re-make of a film here... perhaps Kurlan could play a cameo part?

worried dad .. I thought we had a good mix but your's trumped ours :-)

Not us.. we're english, polish and irish...

Sorry.. no advice on meds but I buy my dd, literally.. I promise her virtually anything she wants from cake to toys...... good luck

Hello These all sound like night terrors too me.. the link below describes it quite well.. both night terrors and sleep walking are parasomnias. My dd6 has a lot of night terrors during epsidoes and some out of them if she has even a very low grade fever... you know the sort - the ones that mom's hand can feel that, radiant heat stuff, but use the thermometer and she seems in normal range. Ibuprofen at bedtime seems to do the trick if she's slightly hot at all... then she won't have a night terror then. Nothing worked during an episode though, to stop them. http://holisticonline.com/remedies/sleep/s...eep_walking.htm

Hi - Are you in a position to be able to do a telephone consult with any of the "big name" drs eg Drs Trifiletti, Latimer or Kovacevic? Perhaps, if one of them is on board you may get better results from your dr if they can consult together. Our dd6 never had a positive strep test or raised titers but based on a clinical picture of sudden onset and good response to abx (1 time at least) Dr. T felt it was indeed PANDAS (although he felt we may want to conclusively rule out Lyme and mycoplasma pneumoniae with testing). And, in my opinion, your dr is talking rubbish about the abx and the steroids. Our dd with the non existent titers responded beautifully to steroids. From a quick ramping episode (also after a likely H1N1 flu or very similar flu-like illness) to no symptoms in 5 days flat. And is still holding 6 weeks later. I feel for our dd that her blood brain barrier was weakened and steroids shored it up which is the anti-infammatory effect. I'd take the zith (anything's better than nothing) but be actively seeking more.....

The "Out of Sync Child" is a good book to read to understand some of these sensory processing issues kids can have. Our dd has significant issues with this stuff when in an episode....

Hi. My PANDAS dd6 had a LOT of sensory processing problems with her episodes and my ds2 (possibly PANDAS) also has some low level sensory issues. I was reading and wondering recently if some of the rages/tantrums that PANDAS kids have are in response to their sensory issues. Kids with Sensory Processing Disorder can flip out at what seems to most people, either nothing or odd things. If this were the case the trampoline and even the headstand thing would be ways for them to regulate again.. just a thought....

Yeh, our episodes have so many different components that vary from episode to episode and even during the epsiode itself, that I know if I were to take our dd to 6 different drs (non PANDAS ones) I'd get 6 different dxs. We'd have OCD, transient tics, HDHD, ODD, Sensory Processing etc etc. It scares me rigid to think how many kids are being treated incorrectly. I also feel absolutley certain that some PANDAS kids might only show behavioural stuff or for those with OCD, their OCD is hidden from others, as is common.

Hi No advice, I'm afraid but know your frustration. Our dd6's 1st episode had this in the form of something like this... "my hand just touched my face. It had just touched the wall and my nappy (diaper) was near the wall. Will it be okay?" We had this type of question up to 200 times a day and I had to reply that it was okay or all ###### would break loose. Having read "Freeing your child from OCD" I explained to her what was happening (she was 5 at the time) by likening it to sales calls.. some calls we want some we don't. She got that these were worry tricks her brain was playing on her and I rejoiced when, as the next question came, she was okay with the "this is a sales call, we won't answer it" response.. seemed too easy... I realised that she was taking that as her "okay". I was still fulfilling her ritual. And so it continued. I'd change it up but she'd change it up with me.. as long as I responded verbally, it completed her ritual for her. The only thing that didn't was to ignore it totally.. look at her, make eye contanct but not respond. That was at the worst point of her 1st episode and thankfully she responded to abx quickly 'cos I don't know how we would have coped for more than a few weeks with it. It was driving me and her crazy. Don't know if I did it wrong or she was too young or just smarter than me (probably the latter)...

SF Mom - does Dr K have any tests that you know of to detect strep in the gut. We often have nausea and stomach ache at flare times and even some quick vomiting epsiodes. I'd love to know if it's in there. We have never shown a rise in ASO or AntiDNaseB. Thanks..

Hello Our dd also ramped up during her 1st abx and for us it was just that we were already ramping and had to wait for abx to kick in BUT... Dr T asked if we had been Lyme tested 'cos when kids with Lyme's (which can present similarly to PANDAS) start on abx they often get a die off reaction called herxheimer. This actually makes symptoms worse until the die off levels again.. dunno.. just a thought.

cool.. thanks :-)

Thanks for the responses. suzan and amy s - did/do your drs recommend treatment with abx for your children or other family members even tho' it's not Group A. If so, would you mind telling me who your drs are and their reasoning for this. Also, if treated what abx did you use and did you test afterwards to check for clearance. Sorry for so many questions but our ped feels treatment is not necessary as dd and ds are doing ok at the moment. She feels we'd be in a worse place if it were a problem but is happy to offer abx anyway. I just don't want to look like the crazy woman jumping at shadows and risk losing the good relationship I have with our dr. Also, my culture was positive after one recent and during a second (virtually completed) course of azithromycin and our ped feels we probably won't get clearance anyway of what is considered normally present upper resp flora...... Thanks...

Hi - I think how successful each burst is and how long the effects last, will vary from child to child and may even vary from episode to episode. This was our 1st steroid burst, so the jury is out still for us. Before all this "steroid' was a dirty word to me in drug terms, as I think it is for most people. You hear so many bad things about them but now it's my fave drug of all time, up there with abx!!

T.Mom.. yeh it seemed high to me but when I looked at some of the dosing used for the month long bursts it was about the same but concentrated into 5 days. Also my dd is only 6 but 95th percentile for height and weight (65lbs). Our ds2 who weighs 32lbs ish, got 30 mg per day for 5 days. I am just so happy with the result and no negative side effects except some bad temper that I think we will stick with that dose for future bursts should we need them...

Worried Dad.. I actually meant was dcmom's dd covered in case the immune suppression of the steroids let an underlying infetion flare and make things worse but yes, I had heard from Dianna Pohlman originally, I believe (forgive me, if I'm worng on that one, Dianna) and then from Dr. T that abx and steroids alone may be enough for some kids if they're immune systems haven't ramped up too far. For those that have been too "stimulated" additional immune suppression may be necessary eg IVIG PEX. And for others maybe just abx alone will be enough.. get rid of the trigger and keep it away and their system can regulate again. I got the impression from Dr T that if the child seems not to be having episodes in response to things other than strep then that may be a good sign that the system hasn't ramped and that less intervention may be necessary. He also said that for some kids, especially those low end ones, that they may be able to come off abx earlier and that their system may have reset, sort of, and they may no longer have the inappropriate response to infections. Hope I got that right and didn't misquote - my rider is that, that is all subject to my memory :-)

hello I agree with peglem....it could be driven by ocd...below is a good link to look at, if you haven't seen it already. It's a previous discussion on the forum about OCD signs in kids http://www.latitudes.org/forums/index.php?showtopic=6153

Hello I know this got visited a while back but thought with new members I'd ask again. When our dd6 had her 1st episode, she cultured positve for beta hemalytic NOT Group A strep. My dh cultured positve for Group B strep shortly before that episode. I cultured positive for Group B during her 2nd episode (in my throat). I have just cultured positve for beta hemalytic NOT Group A in my nose. That culture was taken 3 days into a z-pack and 2-3 weeks after a previous z-pack that I missed the last dose of due to gastroenteritis. Do others feel that different types of strep could be an issue and not just in the same way that all infections can ramp the immune system and cause episodes but in an inital trigger kind of way? (sorry didn't explain that very well...) I got the sense from Dr T that he felt other streps may be an issue. I think we will always, in future, not just ask for a swab looking for strep A but ask for the general swab that identifies all growth. If you ask for Group A that is all you get results for, I believe. They will not comment on other Groups found etc. Any ideas welcome, thanks...

Hello Our dd6 had a ramp in PANDAS symptoms that was turned around by steroids. Over the last couple of weeks she has had super minor issues at bed. Yesterday she had stomach ache (she had a very loose tooth that came out last night. I'm sure that tooth loss for her releases stuff into her bloodstream) we also seem to get stomach aches or nausea at times of symptom flares...... sorry long intro but.... she seems to get dilated pupils when she gets the stomach ache.. is that 'cos both come at exacerbation or due to the pain? She won't be dilated all day. It seems more correlated to the times she is in pain although she assures me the pain isn't that bad but I'm assuming the dilation is due to pain. Am I wrong? Any ideas are welcome... Thanks.

Our dd is 65lbs and we did 30mg in the am and 30 mg in the pm for 5 days, no taper....

Hello Is Caroline on treatment dose of abx too at the same time as steroid? (forgive my sleep deprived rubbish memory). Just in case you have something hiding out and the steroid use lets is multiply....

Hello The tongue protrusion thing and noise was EXACTLY what my dd did during her 1st episode. I've since read that darting tongue can be part of chorieform movements (she did have other chorieform movements) and have since wondered if that was one too.... when I read what you wrote wondered if it could be too... you could have written that bit about my dd!

Hello Our dd6 (65lbs) did 60mg per day for 5 days. We were in the first throes of an epsiode.. not awful but had marked OCD with hyperness/more difficult to discipline/more labile. On a scale of 1-10 (10 in our house was high-moderate OCD, some ticcing, lots and lots of behavioural stuff, sensory stuff, sleep disturbance, defiance and on and on) she was only at a 2 or 3 before the steroid but ramping up fast (over 24 hours). By the end of the 1st day on steroids we were at a 1 or less. By the day after we finished the 5 day burst she was symptom free. 6 weeks later we are still symptom free almost. At 4 weeks 1 worry per night at bedtime crept in and I have noticed she is slightly more likely to cry over stuff. But so not noticeable to anyone else. Dr T also said that if she were to ramp up again, we could repeat the burst... Hope it lasts for you.....

Don't want to flog a dead horse here but.... could this be strep breakthrough even on the zith.... headaches/stomach ache/throat/chest could all be an infection and if the ears are infected too, this could cause dizziness.. unlikely maybe but it is worth considering? I admit I tend to see strep everywhere but is it worth adding in another abx (dr t suggested clindamycin to us for breakthroughs but we are only on 600 mg per week)?