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Wombat140

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Everything posted by Wombat140

  1. Hello everyone, a couple of basic questions. We've finally involved our doctor and since she knows nothing at all about PANDAS, we're having to go over everything from scratch which is good for us as it makes me realise that I didn't know as much about the basic principles as I thought I did. There's nothing like trying to explain something to somebody else for making you pay closer attention yourself! 1) My OCD symptoms don't follow a "saw-tooth" pattern, they're all the time - they'll go up or down slighly over a period of months, but they've almost never disappeared since they started. Does that mean it's not PANDAS? And does the saw-tooth pattern still apply with things such as Lyme disease that are a continuing chronic infection rather than repeated separate infections, or would you expect the symptoms to be continuous (like mine) in that case? (If so, can that be taken as a small clue to what infections it might be?) 2) I've read that a steroid burst is a bad idea if it might be Lyme disease. Since we currently have no idea what it is at all (haven't been able to access any antibody testing yet), does that mean that we shouldn't try a steroid burst unless and until we do find out what the infection is, if any?
  2. Small correction to what you said there - Mycoplasma's actually a bacterium, not a virus. Sorry I can't help you get the full article, my student access to journals has run out now. I agree, good to hear studies are being done! Odd that there's no abstract (summary).
  3. Wombat140

    Next step: medications?

    If the blood tests are important, can your local doctor/nurse not do a home visit? (If your son can deal well enough with the blood test itself, that is.) That's what our family doctor is doing for me at the moment, since she accepts that I really can't make it to her office; and she's said she's willing to do that for tests ordered by other specialists or fixed up independently with a private lab, too, if the test sounds like it makes sense. It usually means waiting a few days until she has time free, but otherwise no big deal.
  4. My mum's rule of thumb in baking is that if the filling is sweet, always use unsweetened pastry. This not only cuts down the sugar, it tastes better, as the contrast between the sweet and plain parts shows up the flavours. We puzzle every year over the fact that no shop-bought mince pies are EVER made with plain pastry. We always make our own - not quite as pastoral as it sounds... packet pastry mix and a jar of mincemeat... but they're so much better. Mincemeat plus sweetened pastry doesn't have room to taste of anything much but sugar. The same is true the other way around, that's why a sweet crumble topping works best of all with slightly sour fruit like tinned apricots in juice.
  5. Thanks muchly Sheila! These look very tempting... unfortunately, I'm not actually doing GF/CF right now, what I'm doing is an attempt at a low-free-glutamate diet... which excludes both mushrooms and cooked tomatoes. Bad timing! When/if I decide that some or all of those things aren't actually making any difference, I may well be back to those pizzas and, um, quasi-pizza-objects. (I've taken a fancy to the idea of the pizza-flavoured omelette.) Question for anyone - I keep having problems with millet and quinoa that have somehow gone off, or something. Anyone else get this, or know what's causing it? Some bags are fine, others (even from the same brand and the same batch number) have this faint weird, sickening aftertaste. It's so faint that at first I tell myself I'm imagining it, but it just gets worse as I go on eating until I usually can't finish the helping. And, as I say, some bags taste just fine to me, so it's not just that I don't like it. I've had it happen with several different brands and with millet flakes, millet flour, quinoa flakes and quinoa flour, but not (so far) whole millet. (I don't know about whole quinoa because I never use it, don't like the texture.)
  6. Something in that, well thought of - I know I play computer games excessively when I'm feeling bad, everything else seems too difficult. If for some reason I haven't got a game to play at the time, I'll rattle randomly around forums, anything. (I do often feel better if I can manage to motivate myself to start on something else, non-computerised, and get into it, though - but sometimes I just can't get into it even if I try to stick at it for a bit, and have to give up and go back to the computer.) On the other hand, using the computer definitely does muck up my concentration completely after an hour or so (this is true whether I'm having a bad patch or not). So there are things both ways.
  7. Ah, I see. So no particular indication of whether it's streptococcus or not from that, then. (That's useful to know, I'm giving my doctor a copy of "Your Child has Changed" and I wanted to know what to scribble on that bit.) Realistically I don't think I have a chance of getting prescribed high-dose steroids just on the off-chance, before there's any evidence that I do have anything wrong with my immune system - American doctors just seem to prescribe much more recklessly than British ones. But I'll ask.
  8. Wombat140

    Help to diagnose

    Wisdom-seeker - did you mean to say azithromycin, not Augmentin? It was azithromycin that Alyonushka's daughter was improving on, and I don't think Augmentin is usually supposed to work for Mycoplasma. (Just pointing that out for Alyonushka's benefit, really.)
  9. Well, I know some (but not all) kids grow out of normal food allergies, so perhaps it's just simply that some of the Tourette's kids also grow out of their allergies. Something to do with the immune system developing, perhaps? (Wikipedia has something on this https://en.wikipedia.org/wiki/Food_allergy - look under "Epidemiology".) But you can't rely on that happening, and meanwhile anyway the tics are a pain for you and him, so if identifying and dealing with an allergy could help then that's worth doing, even though he might later grow out of the allergy anyway. At least that's my logic.
  10. Wombat140

    Super quick question

    Hi Mike. I understand what you're saying, OCD is dependent on so many external factors (stress, seeing stuff that reminds you of your OCD theme, etc.) that it's a complete swine to try and guess just what is going on - whether things are worse biologically or whether it's just that life has been provoking it more. OCD is my main symptom and I have the same problem working out whether it is responding to anything I try taking or not. Looking at your previous postings I see that you've had elevated test results before for strep anti-DNAse B, mononucleosis and mycoplasma. Rather than trying to get an MRI (even if MRIs could answer this question which, as others have said, they can't really), wouldn't it be easier to find out whether you're having a flare by getting those re-tested and seeing whether any of the numbers have jumped since last time? (Other people - is that right, that titers go up when you have a flare? I'm pretty sure that's right but I'm going from memory of what I've read.) I may be misjudging how much easier that would be, of course; there's a super-long waiting list for MRI scans of any kind here, it may be different where you are. Here, getting your titers redone would certainly be much easier and quicker than getting an MRI, if you had access to the titer tests at all.
  11. Millet flake biscuits I often find that to avoid sugar, it's useful to have a stock of non-sweet things that fit the kind of occasions when you'd previously have had something sweet. If I've been baking these biscuits and feel in need of something specially nice to nibble on to cheer me up (frequent occurrence with OCD in the house...), I don't have to either cave in and eat sugar or go without. They're lovely and crumbly despite having less fat than usual, I think it's the millet flakes that do it. Ingredients 6 oz (175 g) wholewheat flour 4 oz (50 g) millet flakes. (The original recipe that this was heavily modified from says medium oatmeal. Never tried that with this version as my mum's allergic to oats, would probably work fine for all I know.) 2 oz (50 g) butter 1 tsp baking powder 1/2 tsp salt 1 tbsp or so of milk. Pre-heat oven to Mark 4. Grease a baking tray. Mix everything but the milk together in a bowl. Rub in the butter, then add enough milk to make a rather wetter dough than usual for, say, pastry, as it tends to crumble. Roll out thin, about 1/8 of an inch, and cut into 7 cm (3") biscuits. Bake for 15-20 minutes, until firm and lightly browned. Leave to cool, then store in an airtight tin. They keep for about a week, but if they do start to lose their crispiness then heating them up in the oven will revive them.
  12. Millet porridge Per person: 2 tbsp millet flakes (not millet grain). 200 ml (a little under half a pint) water. Mix together in a small saucepan. Bring to the boil, then simmer for another 2-3 minutes, stirring all the time. Turn off the heat and leave to stand for another few minutes. Add whatever bits and pieces you like, either before or after cooking - I like to put raisins in mine. Millet flakes are very handy things. They make a nice muesli base as well as porridge; you can coat burgers with them instead of breadcrumbs; and they'll work in baking recipes wherever it says oatmeal (I've posted a great "oatmeal" biscuit recipe in the sugar-free recipe thread which we always do with millet flakes).
  13. Clomipramine: good suggestion, but might be awkward at the moment. You see, here the rule is that they'd usually only try clomipramine after SSRIs had been tried and failed (it's considered less safe), and I've just been put on sertraline, and bailed out after 2 days because I was getting so much worse. I don't know whether it was physical or whether it was the psychological strain because I was freaking out so much about it; but with no way of knowing that it wasn't physical, I didn't dare carry on any longer, and anyway the result's the same. And my doctor doesn't even know I've bailed out yet. Steroids: well, as I say, I think doctors in this country would only prescribe such a (in their eyes) dangerous treatment if you had a serious illness. But then, I have to keep reminding myself, I HAVE got a serious illness! Also the NHS website suggests that serious side-effects are mainly a concern only if you're taking them for three weeks or more, which this wouldn't quite be. I'll ask. Meditation: no, you're not annoying me. I've tried any amount of that, but never got that far. What kind of meditation exactly was your daughter doing? There seem to be any number of possibilities! And thank you so much for all this advice! Apart from anything else, it keeps me from panicking whenever I'm left to work it out on my own...
  14. So I've been corresponding with a private lab that might run PANS-related tests and so on, but they're quoting astronomical prices. This would all be out of pocket - we don't have insurance and the National Health Service wouldn't cover it as PANS isn't widely recognised yet and anyway a doctor hasn't ordered the tests. So, if you were only doing one of these tests, which one? If you were doing two or three, which two or three? If a test actually enables us to do something that'll help to fix the problem, then it's worth every penny. But we haven't the money to try things at random without knowing which are the most important. (Do any of them cover several things, for instance is there any test that would be positive if I had either strep OR mycoplasma? That might narrow things down a bit - if I had that positive test, you see, my doctor might then feel she had a respectable excuse for sending me to an NHS specialist and for further testing.) Remember please, I don't know what a lot of these things even ARE, I've only seen the names given as tests useful for certain things. Sorry to keep asking for more help. My OCD's beating me down and I'm just not in much of a condition to make anything of all the jigsaw puzzle of information by myself. By the way thank you all for giving me the information that allowed me to put together this list of possible tests in the first place! Here's the list of possible tests I sent the lab, with the prices they gave - I've left in the things the lab said they didn't have, so you can see why I seem to be leaving out some obvious things:
  15. B12 is a bit of a funny business. When I was having blood tests done recently, my doctor said to me that "I could do our standard B12 test if you like, but it's only about 50% accurate" - though I've no way of knowing whether that's the same type of test that your doctor did. Also, there are conditions where the same amount of B12 doesn't go as far - either it's not used efficiently, or something is going on that uses up extra B12 - so you might have a normal blood level and it still not be enough. The bottom line is, if your B12 is the same as your daughter's and taking sublingual methylB12 improved your health, then the same could happen with her. Looking at Wikipedia, there doesn't seem to be really such a thing as an overdose of B12 (unless you hit one of those weird PANDAS reactions that Emst mentioned, and from what I've heard those go away quickly if you stop taking it), so there's no harm in trying it. I'd say the first thing is probably to try that, as you are doing, and see how far that gets you, before starting on anything else. I hope it does help your daughter feel a bit better. Let us know what the result is, please! Oh, by the way, just a suggestion about the stomach aches - taking a peppermint oil capsule often works like magic for me when I have a stomach ache or feel sick (doesn't work every time, but often), so you might give that a try and see if it helps with that. I mean, it presumably won't fix whatever's causing it, but it might help her feel a bit better in the meantime!
  16. B12 is a bit of a funny business. When I was having blood tests done recently, my doctor said to me that "I could do our standard B12 test if you like, but it's only about 50% accurate" - though I've no way of knowing whether that's the same type of test that your doctor did. Also, there are conditions where the same amount of B12 doesn't go as far - either it's not used efficiently, or something is going on that uses up extra B12 - so you might have a normal blood level and it still not be enough. The bottom line is, if your B12 is the same as your daughter's and taking sublingual methylB12 improved your health, then the same could happen with her. Looking at Wikipedia, there doesn't seem to be really such a thing as an overdose of B12 (unless you hit one of those weird PANDAS reactions that Emst mentioned, and from what I've heard those go away quickly if you stop taking it), so there's no harm in trying it. I'd say the first thing is probably to try that, as you are doing, and see how far that gets you, before starting on anything else. I hope it does help your daughter feel a bit better. Let us know what the result is, please! Oh, by the way, just a suggestion - taking a peppermint oil capsule often works like magic for me when I have a stomach ache or feel sick (doesn't work every time, but often), so you might give that a try and see if it helps with that. I mean, it presumably won't fix whatever's causing it, but it might help her feel a bit better!
  17. No, I haven't. I've had one course of 5mg/day for a week or possibly two weeks (can't remember) from the one PANDAS doctor I did see (who's no longer practising). That didn't seem to do anything, but I'm told that's a minute dose in PANS terms. I get the impression that the kind of dose normally used for "steroid bursts" for PANS (1-2mg/kg?) would be considered huge and highly risky over here, you'd need to be very ill to have that. I might check my facts on that with my family doctor though. Thank you so much for that article, I didn't know about those people! I think I'll write to them and ask if they could advise or else if they know anyone who could. (I seem to remember that last time I was writing to possible people, half of them didn't reply... but I'll give it a try!) Thanks very much for having obviously read my sig in detail, your reply told me much more that might bear on the situation than most of the ones I've had recently! also it's just nice to have somebody listen at times like this...
  18. No, I haven't. I've had one course of 5mg/day for a week or possibly two weeks (can't remember) from the one PANDAS doctor I did see (who's no longer practising). That didn't seem to do anything, but I'm told that's a minute dose in PANS terms. I get the impression that the kind of dose normally used for "steroid bursts" for PANS (1-2mg/kg?) would be considered huge and highly risky over here, you'd need to be very ill to have that. I might check my facts on that with my family doctor though. Thank you so much for that article, I didn't know about those people! I think I'll write to them and ask if they could advise or else if they know anyone who could. (I seem to remember that last time I was writing to possible people, half of them didn't reply... but I'll give it a try!) Thanks very much for having obviously read my sig in detail, your reply told me much more that might bear on the situation than most of the ones I've had recently! also it's just nice to have somebody listen at times like this...
  19. I'm not my kid, I'm me. Can't find PANDAS specialist in this country (UK). Also would a PANDAS specialist be any help anyway if it's in fact Lyme disease or relatives, or vice versa, would a doctor who knows something about Lyme disease be any help with PANDAS? edit: edited, sorry, lost temper a bit, not personal, sick of being sick and sick of explaining everything over and over again to different people... there's so much stuff I can't put it ALL in my sig and if I did nobody'd have time to read it. Thanks for trying to help.
  20. Wombat140

    Allergies/Tics

    Are the steroids supposed to bring down the allergic reaction generally, i.e. throughout her body, or just to treat the hypothetical problem with her nose? (If you know?) It being a nasal spray makes me wonder whether it's only meant to have a local effect, which if so would only work if the problem is indeed just that her nose is irritated rather than that her brain is irritated. I know antihistamines are supposed to cancel out an allergic reaction generally, or some kinds of allergic reaction at least. I don't know about a steroid spray, off-hand. NB don't take this as meaning that it WOULDN'T have a general effect, I just don't know whether it would or not and am curious!
  21. Wombat140

    Allergies/Tics

    Do you mean he thinks that they are in fact allergies RATHER than tics, i.e. she blinks all the time because the allergies irritate her eyes? If so that does sound as if it doesn't entirely account for all the things you're reporting in other postings (the shoulder rolling, especially, unless it's just a response to being generally annoyed by it all). But allergies can also CAUSE, or exacerbate, actual tics as Chemar says, and that might be what he meant, I don't know. That would make sense. Anyway, in either case if there are allergies then sorting them out should help. Good luck!
  22. Hello, just to let people know that I've started threads in the "Diet and GI" forum for "favourite GF/CF recipes" and "favourite sugar-free recipes". Thought I'd post because I know not everyone looks at that forum, and nobody seems to have noticed it so far. Do have a look and add your favourite meals and tricks-of-the-trade! So far there's "pizzas" and a quick banana bread-and-butter pudding.
  23. Wombat140

    Appointment help?

    Thanks!
  24. Been on 'em, Augmentin and (separately) azithromycin, see my sig. No good. Does that rule out all possibilities of it being an infection, or are there things that don't necessarily respond to that? Anyway, thanks for letting me know that things like strep titers are still applicable, that's useful to know. (Also, you buy antibiotics online?? I've always heard that you have to be crazy to buy any kind of prescription medicine off the Internet. Or have you found a legal supplier? I don't know what the rules are in America so I don't know whether it's possible to legally sell prescription-only medicine without a prescription there. ...Written like that, that doesn't make any sense, but whatever.) I like your avatar.
  25. Wombat140

    Repreeve Patch

    Actually, the Repreeve FAQ doesn't explain anything at all about how they are supposed to work, only that it's not medication! Neither does the rest of the website. Very odd. I don't know why they did that. Mayzoo reports ( latitudes.org/forums/index.php?showtopic=23955 ) that she e-mailed them and the answer is it actually works by a form of acupressure, so all it really consists of is patches with tiny bumps on them and instructions on exactly where to place them. It seems to have worked for several people on here.
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