Wombat140

I've heard that one, though I haven't tried it myself yet. It's actually spelt turmeric, with an r, so if you put that into the forum search box you'll find a bit of information. The active substance in turmeric is called curcumin, and apparently if you buy turmeric supplements you should try and get one that states its curcumin content, as they vary. Some supplements are actually sold under the name curcumin rather than turmeric. There's also a turmeric extract called Enhansa which is used in much the same way. Anyone tried this?

Glad to hear that Ozimum. My mum asked the pharmacist who made it up whether it's all right to use the dry powder. (The capsules definitely aren't waterproof.) He said something about it might not be dispersed properly in the jar, not mixed properly or something, and adding water would mix it up properly... Mum couldn't get any clearer explanation than that. I don't understand that, couldn't you just shake the jar to stir up the powder before filling the capsules? Any ideas? have any of you done this and it worked?

$1.50 for one Tylenol. $36 to take a blood sample. Meanwhile in the UK, members of our half-baked attempt at a government are declaring that the state-funded National Health Service is hopelessly inefficient and must be replaced by something more like the cost-effective American model. Just saying. THIS is why we have to keep fighting them.

Yes, I noticed that thread before, very strange. I can think of any number of intriguing ways it MIGHT make sense, but don't know enough biology to be sure whether they hold up or not! Any of you (whether or not it helped) remember how much blood was taken, as against what age/weight? Interested to know what kind of amount we're talking about with this effect.

No, I've been able (after a bit of to-ing and fro-ing) to get it as pills before, but this is a different mixture with less clavulanate and more amoxicillin, and they just don't seem to have it in pills. I did check, believe me! Unfortunately my PANDAS doctor insists on having the prescriptions made up by his own local pharmacy and posted to me, for complicated reasons I don't quite understand, so I couldn't try another place. Thanks very much for the information. That solves that problem! Managed to find a UK supplier on Amazon, then got the capsules and the filling gadget directly from the supplier's website (www.bulkpowders.co.uk if anyone wants to know). Been doing that a lot lately. If Amazon don't like it, they shouldn't fiddle their taxes.

Well, I've got prescribed a higher dose of Augmentin - 800 mg amoxicillin/134 mg clavulanate twice a day for 2 weeks, then 400/67 twice a day for two weeks. The trouble is, that formula is sold only as liquid and it's foul. I mean, foul. Tastes like equal parts aspartame and air-freshener. I'm not sure I can manage it. Doctor's secretary suggested buying empty capsule shells and putting it in those, which would be perfect. But she doesn't know where to get them, apparently she's just heard some other patients mention them. Please can any of you help? I'm in the UK, so somewhere in the UK would be quicker if possible, but of course an American firm that ships to the UK would be fine if not. Can I just put the powder in the cases, or does it need to be mixed up into liquid form first? And how exactly do you fill them, do they sell a thing for doing that? Sounds a pretty fiddly job otherwise, but then I'm REALLY good at fiddly jobs, that's one thing! Thanks very much, Wombat140

How do you check the thyroid? Just interested because I've always been ridiculously skinny myself, even though I eat plenty - although it is in the family, in my case; my dad's exactly the same way. A couple of times recently I've had to make a special effort to put on a few extra pounds because my periods had stopped.

Thanks Nancy. Anyone know if it'd have any chance of having the same effect as more Augmentin? (if can't get more Augmentin - obviously that'd be better!) I can't remember what I've seen it mentioned for on here, apart from C diff. If not, do you know anything that would? My mum thinks she remembers seeing some caveat about the safety of grapefruit seed extract some time or other, but I can't find any details if so. Does anyone remember any such thing?

Been on co-amoxiclav (Augmentin) for four weeks, dose 750 mg of amoxicillin a day (= 1,125 mg total Augmentin), and tinidazole (forgotten how much). It isn't helping. Doctor is doubtful about increasing dose. Would like to know, if he won't increase the dose (I'm really hoping he will), would it be safe to take grapefruit seed extract alongside the antibiotics, and would it be at all to the point anyway? Or any other non-prescription stuff for that matter. Many thanks Wombat140

I think Smartyjones has a good point about trying to do it gradually. Maybe if he starts to lose his nerve when you get to the door, he could stay there until he's feeling better and just getting that close could be his exposure for the day, and then work up from there. I'm just looking at it as if it was a classic phobia - like fear of heights or fear of spiders - fairly automatic, Pavlovian sort of response to a particular situation. (In which case, from what I've seen, asking exactly WHY he's scared may not get you anywhere, because a classic phobia is completely reasonless by definition.) It may or may not be, of course - might be something more complicated, like DCMom's daughter who turned out to have a phobia of being sick rather than of the school itself. But it's worth a try. The standard method with phobias nowadays, as I remember, is * find a level of exposure which is pretty scary but doesn't actually make you panic, * STAY in the situation until you calm down. * when you're getting the hang of that, repeat with something more difficult, and so on. With spiders, for instance, you might start with only holding a photo of a spider, then work up to a spider in a glass at the other side of the room, and so on. It takes quite a long time that way, but it does work. Just seems to me it might be an alternative to either getting nowhere or going right in and collapsing with terror. The essential thing is to STAY at that point each time until you stop being scared, rather than doing it, getting scared, and then leaving off before the anxiety goes - have you maybe been leaving when you see he's not going to get there, while he's still scared? It's a reinforcement thing - one way, the subconscious sees go near school/scared/get out of there/feel better, the other way it sees go near school/scared/stay there/leave feeling fine. You have to talk to the subconscious in words of one syllable, it's not too bright ;-) P.S. That said, are you quite sure whether he actually wants to go to school but can't do it, or whether he has some secret real reason for not actually wanting to go? For instance if he was showing a lot of PANDAS symptoms before he came out of school, other kids might have been bullying him about it and he might be afraid they still will. Kids don't always tell. Do try and get him to tell you that at least. (Or you might ask other kids or parents.) P.P.S. My mum has just suggested you could go to the school by yourself and make a video, starting outside, going into the classroom and staying there for a bit, and he could watch that at home (at least as much of it as he can cope with) for a bit of extra exposure. Behold the low cunning of a psychologist :-)

Thanks Nancy. That kind of suggests that it should only take 4-5 days to see an effect - but then maybe he was "almost there" on the lower dose anyway, and things only needed pushing a bit further? Anyway, I e-mailed the doctor on Thursday so surely there should be a reply soon - fingers crossed. Anyone know how long it takes before you can be sure it's not working? Or whether no results at all at a low dose can still just mean you need a higher dose?

Thanks for telling me, all of you. I've asked the doctor whether he'd consider increasing the dose, since there hasn't been an improvement yet. Rather hoping he will, after what you've said. No answer yet, it always takes a few days to get hold of him because of course he's up to his ears with work. I think maybe he only said to reduce the dose because he'd expected results to start before then. Colleenrn - are you talking about total dose of co-amoxiclav there, or dose of amoxicillin? I was quoting in amoxicillin - I'm taking 1,125 mg total co-amoxiclav, and the dose I'm supposed to reduce to would be 750 mg co-amoxiclav. I'll have another crack at keeping a note of symptoms, and I'll ask Mum too. I did it for a while when I started the azithromycin, and then things got so bad it fell by the wayside. Was just getting too depressing. The improvements were the most depressing part, because the next week I'd have to write down that they'd gone... Ah this is a dog's life. I'm just the skivvy for a bunch of tics. Anyhow, since it seems you can go a lot higher dose than that, maybe that'll crack it. It had better, since it's still proving impossible to get a needle into me. ( 1: nerves 2: tics.) I suppose steroids also possible, that's pills, isn't it? Mum wants to know whether, if any of you have started out with an insufficient dose and had to increase, you noticed any results at all on the lower dose, or whether it's likely that you wouldn't notice any difference until you got to whatever turned out to be the dose you needed? Thanks very much. Wombat140

Yes, sorry - I'm taking 750 mg of amoxicillin i.e. 1125 mg total of Augmentin a day. Each pill has 250 mg amox. and 125 mg clav. and I'm on three a day, but supposed to reduce to two a day next week. It's the time thing that really bothers me, can anyone advise? Is three weeks really enough that I'd have seen an effect by then if there's going to be one? If not, does it really make sense to reduce the dose before any effect's visible? I'm going to e-mail the doctor, but I'd like to have some idea what I'm talking about by the time I get a reply! Many thanks Wombat140

How's it going?

It's me taking it. Thanks very much for the reply! Is that slow-release or normal Augmentin? I've heard you can give higher doses with slow-release. How much does your son weigh, by the way? I only weigh 42 kilos so I'm never quite sure where that leaves things.

I'm three weeks into a course of co-amoxiclav (Augmentin) and tinidazole. There hasn't been any improvement so far. Currently taking 750 mg of co-amoxiclav a day (in three doses), but the prescription says to cut it to 500 mg when it gets to four weeks. Is four weeks long enough to be sure whether it's going to work or not? If not, is it really a good idea to cut the dose before it starts to work? Is 750 mg a high enough dose anyway (given I've had these symptoms for years)? When I say 750 mg, I mean 750 mg amoxicillin, with 375 mg clavulanic acid. Confused. Don't want to blow it.

It's just the way people talk in this country. For some reason we don't call bacteria by their Christian names in the same way that Americans do. If you called a throat infection "streptococcus" in a lay news article, people would look at you funny. I dare say the researchers know perfectly well what the infections were. At least I about hope so!

If it's possible to edit the petition text, maybe whoever posted the petition should briefly define PANDAS for those who haven't heard of it, and perhaps say PANS or PITANDS instead. Something like "suffering from PITANDS (an autoimmune reaction to infection, such as the PANDAS reaction to streptococcus)". Have signed, and so have both my parents! I'm not on Facebook and not in the US, so I'm glad I can be a small bit of help at last. Whole thing disgraceful, can't imagine what she's going through - well, I can, that's why I'm so angry.

There's a new page? Where is it? I've temporarily stopped using the OCDAction forum, which is usually one of my favourites, because someone dug up that NIMH FAQ and they all began beating me over the head with reasons why it couldn't work until it just got too depressing. So I'd be keen to see a new one!

Can that really happen? I can't quite believe it, but then it's hard to believe how quickly this type of OCD starts too, so...! Congratulations, and I hope everyone else here soon has the same to report - including me!

Thanks for the information!

I'm having trouble piecing together all the remarks about probiotics. As it happens we've got some in the house already (Healthspan brand) - that's 5 billion live bacteria per capsule, 75% Lactobacillus acidophilus, 20% Bifidobacteria lactis, 5% Lactobacillus rhamnosus. (Culturelle isn't sold in this country that I know of, by the way.) Is that the right stuff? (with azithromycin, don't know what dose unfortunately). How often should I take it, and how many capsules? I know you're supposed to wait at least two hours after taking the antibiotics. Incidentally the same firm do do another kind with 20 billion per capsule - Lactobacillus acidophilus NCFM - 25% Bifidobacterium lactis BI-07 - 25% Lactobacillus paracasei LPC-37 - 25% Bifidobacterium lactis BI-04 - 22.5% Bifidobacterium bifidum BB-02 - 2.5% don't know if that would be better. Thanks very much Wombat140

Just so you know, poll isn't set up quite right - the main question appears as a heading but there's no box you can tick for it.

The books we used when I was trying the GF/CF diet were "A User Guide to the GF/CF Diet" by Luke Jackson (then 12, with Asperger's and a wild sense of humour) and "Diet Intervention and Autism" by Marilyn Le Breton, both from Jessica Kingsley Publishing. I think it was the latter that had the recipe for the wonderful scones (I think they're called biscuits in American). I ate a lot of those. They're almost exactly like ordinary ones, except they inexplicably keep fresh for up to a week. Gluten free bread's quite easy, because you don't have to knead it - just mix the ingredients, half fill a tin, wait until it rises to the top and then put it in the oven. It comes out rather cakey but none the worse for that. Very simple vegeburger recipe I came up with while doing another exclusion diet: 1lb cooked beans or lentils, or tinned ones (not baked beans! Although I might try that some time...) Spring onion/scallion, or half an onion 1 egg (can leave this out, but they do tend to fall apart then) Chop the onion, mix with the beans and egg. Mash with a potato masher (food processor would presumably work, we haven't got one) until they break up and stick together in a ball. Add water as you go if it's still crumbly. No need to get it smooth although you can if your kids like it better. Make into burger shapes, roll in breadcrumbs if you've got any. Fry both sides until brown at the edges. I don't pretend they're anything like meat burgers (well, they might be; I'm a lifelong vegetarian), but I like them.

Just like to say that you have my sympathy. What a filthy situation to have got into. And I'm sure you could do without all the teachers questioning whether the problem really is what three doctors say it is! I'm glad to hear you got the 5 hours a week home teaching - at the very least, you'll feel safer that way! But I think you'll be fine. If I've understood you right, your daughter's concentration would be much better at home, with not having to look at all the other kids and wonder whether they'll be sick. So anything she studies at home, she'll learn much quicker, easier and more reliably than she would at school. And as Cobbiemommy says, she'll be able to study however and whenever suits her best, and whatever subject she happens to be interested in that minute, so she has another big advantage over kids at school. So even if she has to leave off going to school at all for a bit, she needn't lose any education by it. You'd be surprised how much children will learn just from having a lot of interesting books and some encouragement, and being left to get on with it, with or without deliberate teaching at other times (at least after they've recovered from whatever crisis made them leave school in the first place). Look up "autonomous education". I was home-educated almost entirely like that from age 11 and am now well on my way to an Honours degree, if only PANDAS doesn't throw a spanner in the works! Education Otherwise's website has a list of good books about home education, both taught and autonomous (or both), although some of the legal information may be specific to England. I've only read two of them that I can remember; "Unqualified Education" is full of good ideas (and recipes) though a bit polemical, "Educating Children at Home" is mainly about the results of a survey of 100 home-educating families, but makes a very readable guide to all the different ways things can go. Good luck! Wombat140