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Wombat140

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Wombat140 last won the day on September 30 2017

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  1. What do you do when you know you're attention-seeking but you don't know how to stop? When something has happened that sent me into a real flap and people are pushing me away because they're in a hurry or something, I just do all kinds of random frantic loud things and I can't stop myself, it just seems to come up from my toes and I can't hold it in for more than a few seconds. This afternoon I picked up a pot of daffodils and hurled it across the garden. It feels like being expected to sit quietly and not make a fuss, although the house is on fire.
  2. What's the vitamin C supposed to do? I don't think I've heard anything about vitamin C in connection with immune system issues, or if I have it went out the other ear.
  3. Thanks Maryangela. I had that test done a few years back but can't reemebemer what it showed, I don't remember yeast being mentioned as high but then I don't remember it being mentioned at all. Might dig out the test results if I can be bothered.
  4. Ta Bobh. Well, THAT's certainly not what I've got. I did find a paper (Hare and Malone 2004) specifically about catatonia in autism, they apparently were the ones who invented the term "autistic catatonia" and suggested that the catatonia-like collections of symptoms they were seeing themselves and hearing reported by others might not be quite the same as typical catatonia, if indeed there is such a thing. They had a case study at the end that did sound exactly like me, except that it didn't go into what happened if he was interrupted in doing this. With me, I go into a state of agitated nonsense that sounds horribly like the descriptions, such as they are, of "catatonic excitement", although also quite like what people on here describe as "PANDAS rage", although from the inside I wouldn't describe it as rage, but people have informed me that I'm wrong about that. Catatonia seems a bit of a mess frankly, they can't even decide whether these symptoms the autistic kids have represent a movement disorder (like Parkinson's) or an extreme fear response. I may be iggnerant but couldn't they get a clue to that one by using a pulse monitor, for one thing? (I mean, with those subjects who will put up with wearing one).
  5. Thanks for your input Maryangela, this seems almost impossible to get anywhere with at the moment, so it's good to know that if the medical side is resolved it can make it a lot easier! Very pleased to hear that life has got so much easier for you and your son. Veering slightly off-topic, but how did you find out that yeast was a problem? Was it just because you happened to try, for instance, that Saccharomyces stuff and it worked?
  6. OK, thanks. What happened? I mean, was he put on or already on psychiatric medication, or did it resolve without that? (And what were they like? Otherwise I don't know whether it's like mine or not - there are so many symptoms listed for catatonia that lots of different things could look "a bit like it".) Sorry, would mean a lot if you could clarify.
  7. Wombat140

    Adult with untreated PANDAS?

    Hello Sascha, how are you doing now? Have you had any success getting the other tests that Dr K wanted? I am in the UK and I do know of two labs in London that do many of the type of tests involved with PANS: http://www.biolab.co.uk/ and https://tdlpathology.com/. I can't remember whether they offer the specific tests you mentioned but I think it's likely they have at least some of them. There are lists on their websites. How it works is you send them the appropriate type of blood samples by post and they analyse it and send you the results. So if your doctor would agree to draw the blood for you, they could do the testing and then send the results to Dr K for him to look at. I think that a lab in England should be close enough to you that the blood should still be fresh enough when it gets to them. Ask them first, of course. But Armin in Germany were happy to test my blood (for Lyme disease), so it seems reasonable that Biolab could do yours! :-) I agree with MomWithOCDSon, definitely show your local doctors Dr K's letter, or get him to write to them. They might be more interested if you prove that a real doctor is asking. Good luck! Let us know how you get on. Oh, and I made this thread a long time ago about treatment options outside the USA, there might be something useful to you there that I've forgotten or you might want to add something you've found to it yourself: https://latitudes.org/forums/topic/24626-treatment-options-in-britain-outside-america/
  8. Wombat140

    Anti- inflammatories

    Rlz already mentioned curcumin. Any luck, Rlz? I'm wondering too. Curcumin doesn't seem to do it for me, we've tried both a proprietary extract (Pure Encapsulations) and just turmeric powder stewed up with butter and pepper. Ibuprofen does seem to do me some good, but I can't tolerate that daily for more than two weeks at a time (stomach). Practitioner wanted to prescribe Celebrex (celecoxib) but I'm hesitant, not clear how safe it's currently thought to be and does it work (for PANS)?
  9. Hi Patmom, how's it going? Any progress? I do hope your daughter gets better soon.
  10. Wombat140

    Extreme behavior

    Hey, that description sounds exactly like what I do sometimes when some part of my OCD has been blown and people are brushing me off. I'd been meaning to ask if anyone could tell me exactly what the legendary "PANDA rages" actually looked like, so I could see whether that's what's happening. Thanks Lordchallen. You feel like something is very wrong and/or you've been terribly betrayed or insulted, and want somebody to do something to fix it or at least do something to make up for it, but you do not know how, or how to get their attention or get it across to them what you need, for that matter you may not exactly know what you need; sometimes it's because you're too agitated to be able to think clearly and you won't be able to work out what it is you really need until the agitation begins to subside from sheer exhaustion. (For that matter, you might be too agitated to recognise it if you did get it. Often all I really want is a hug or for someone to say sorry, but while I'm at top volume, it doesn't really mean anything to me even if they do.) So all you can do is shout incoherently for you know not what, and the more people tell you to stop it and be quiet, the louder you shout. This may just be the ravings of a PANDA, but sometimes I actually feel like I'm not so much waiting for me to settle down, or not just that, but more waiting for my parents to settle down! What I need more than anything else is some sign of sympathy and to feel that there's somebody who will try to help me, but because I started by shouting, there's no chance of that. The only thing that sometimes works is to back off, if I can manage it, grit my teeth and go hide somewhere for a few minutes to give people time to recover a bit and think, then come back and burst into tears straight away - or at least make the most crying-like noise I can manage, since my eyes won't cry while I feel like I'm at war, it's only when I think I catch a faint scent of a hug in th e distance that it lets the tears escape. Oh dear, writing it like that makes mje feel bad about being so icily manipulative as I seem to be revealed to be - but merely continuing the screaming match for another hour isn't really any better, is it? Maryangela, your son's therapist sounds like a noodle. I feel for the poor kid - and for you; that's exactly what would have happened with me in the circumstances, too! :-D Surely someone who does behavioural therapy for a living ought to be able to recognise what a compulsion is and what happens if you do that to it? Perhaps she couldn't see from where she was standing that he was doing repetitions rather than simply carrying on playing, but surely you told her. Ah well, sounds like you've given her her marching orders now, anyway!
  11. Have any of you or your children ever been diagnosed with "Autistic Catatonia"? If so, what happened about it? Did it get worse until treated, as some of the websites I've seen suggest it inevitably will? What (briefly) were the symptoms? And, most importantly, did it resolve with treatment for PANS or whatever, without needing any other conventional treatment? I'd very much like to know, and quickly if possible, because my psychologist thinks I might have it and has referred me to someone for a diagnosis. After looking into it, I think some of the (rather cryptic) symptoms do sound like me, particularly when one of my OCD rules has been irretrievably blown, but it seems that the officially recognised treatment is high-dose benzos or ECT, which I'm not thrilled about! Many thanks, Wombat140 (NB I'm 27 and have been ill since I was 13, and several people over the years have diagnosed PANS of some sort, though I've never really testedc positive for anything. Doing any very through treatment for it has been obstructed by various factors - can't find experienced enough doctyor who's close enough to see in person rather than long-distance, various things cannot be authorised unless the doctor has seen me in person, etc - but just now we think we may be on the trail of a more suitable doctor so hopefully there may be a prospect of having a more thorough look at the PANS possibilities.)
  12. Hiya (digging this up for no discernible reason, I'm just working through a lot of old e-mails because I'm angry). Well, thanks, basically. Thanks for being understanding. You know how it is with PANS... problems that wouldn't even make sense to anyone else. Not now, I can manage right now, I think, but I probably will rant at some point, now I've remembered the idea! :-D
  13. Thank you, this news encouraged me a whole lot! In return I'd just like to say something about what you said: What's really made me see this myself is the migraines I get every now and again. (When I was twelve they used to be every two weeks regular as clockwork, but now they're much less often.) The first stage is that I start to feel just generally awful, yet without any really that drastic symptoms. Sometimes there are NO detectable symptoms at all in which case I may not realise what's going on. I'll feel sure that I'm seriously ill. I'll think what on Earth is wrong with me? Am I finaly collapsing from the strain of everything I put myself through with the OCD, or what is it? Then I get a definite headache and then I'm sick. After that, I'm usually fine, unless it decides to repeat the headache and feeling sick stages again - I try to get to bed before that happens. When I get to the feeling sick stage, if I hadn't realised what was the matter before, I laugh and think, "Oh, so THAT's what was going on!" My point is, severe depression and hypochondria, headache, vomiting. How's that for a set of symptoms? YES, being ill, no euphemisms about it, straightforward "aw do you want a hot drink?" ill, can very easily do this to you. Stick that in your Oedipus complex and smoke it.
  14. A lot of the time awful things happen to me and my family that I can't talk to anyone about because I can't think of anyone else I could possibly explain them to. (One's happened just now.) Is it OK tto rant in the main forum? Or would you rather people didn't? Wombat140
  15. OK, thanks for the ideas Bobh. Well, you say it's a good idea to do the "easy" thing first but, conversely, I was secretly desperately hoping that this is NOT a good idea, because of PANS issues. Getting this bookcase out will involve most of my most precious posessions being moved (it's floor to ceiling, filled to the gunwales, and things are stored in the gap between it and the end of my bed), and I have serious OCD issues about getting things out, putting things away, and anyone else moving anything of mine, so thithis is going to push me to the absolute limit. (And, consequently, everyone else in the house too - you probably know what it's like when a PANDA is under strain). Is there anyone here who knows about mould? How long is long enough for things to disperse? An afternoon, two days, more?
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