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Wombat140

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Everything posted by Wombat140

  1. Can Naproxen work when ibuprofen doesn't? And what dose are you using? I ask because things are really bad. I'm waiting to hear from a PANS specialist about arrangin tests and then treatment, but I'm not sure I'm going to be able to survive that long. I was wondering about asking my GP if she could prescribe me naproxen or something similar. Would that work, and if so, how much would she need to use (per kg and all that)? I can't take psychiatric medication owing t o my
  2. Thank you. What is the full dose? I've heard of LDN but it falls into the OCD's prohibition on psychoactive medication. Sorry.
  3. We're at our wits' end to find anyone who can treat me - we'd had high hopes of Amy Smith in California but have been unable to get any reply to our calls and e-mails so far. Who do all of you know who will treat PANS in adults? And who's willing to do long-distance consultations? Please name as many of each as you can!! My family doctor is willing to take any blood samples that are needed, write prescriptions on the specialist's instructions (so long as they're not for things that she, at her level of seniority, isn't authorised to prescribe - I don't know how likely that is to be a problem) and be responsible for keeping an eye on my general physical state. I know that that's the eminently sensible-sounding arrangement Amy Smith follows for long-distance patients, but no sooner had we established that than she went incommunicado on us. By the way, if we can find such a person, do you happen to know if there are any particular difficulties to be dealt with in being treated by a doctor in another country? We're in the UK and I know there don't yet seem to be many PANS specialists outside the USA. Thank you all very much in advance, Wombat140
  4. Wombat140

    Looking for help.

    How odd. Are there any differences between the brands? Like a different form of magnesium? Just curious.
  5. Wombat140

    Aug/September Tics

    Can you get out of the flu shots next time, if you think they might be causing a problem? At least it's worth trying once to see if it makes a difference. (Over here, I don't think they're given to schoolchildren as a standard thing, only old people and people with existing illnesses. So it doesn't seem that it'd be dangerous for him not to have it.)
  6. Yes, I've heard about the Amy project! I didn't know it was as many as 27 though. Can you tell me, are any of those in the North of England? I was wondering whether, if some of us are, it might be possible to persuade her to pay a visit to this part of the country, rather than stay in London the whole time (which is where I'm told she'll be staying)? We could arrange to pay fares/organise transport for her and so on if it would help. You see, it's not going to be possible for me to get down to London. I'm not getting any medication at all, because things have ground to a halt. Amy says she legally can't prescribe medications or order tests herself, directly, without having met me. So she would have to do it through another doctor here who would prescribe things on her advice. But my GP says she can't order tests unless she can point to somebody registered in this country she's working with who is qualified to interpret them. So we have an impasse.
  7. I see your point, but it took us long enough to get this GP up to speed with what exactly my problems were and what PANS was, from scratch - I can't even think about the idea of starting all over again. Besides, as I keep I don't think it's a case of not willing, I'm pretty sure she just is genuinely convinced that she's not allowed to do this. In which case if we tried another GP we might find the same with them. We've written to her now though and hopefully we'll manage to convince her that it's legal!
  8. Most of the well-known doctors who deal with PANS seem to be in the USA. I've seen other members on here from Britain and other countries. How are you all getting on? I thought it would be good to have a big thread where we could all discuss the options, like with the PANDAS in Adults thread. I've just started long-distance consultations by phone with Amy Smith, a nurse practitioner in California. Apparently she's made a speciality of PANS for some years and I've seen her recommended by several people. The idea is that she's not allowed to prescribe herself without having seen me in person, but she can consult with a local GP and recommend things which the GP can then write the prescriptions for, if he/she approves. We're still trying to arrange exactly how that'll work out, so far - my GP is willing in principle but she's never done such an arrangement before and sounds rather doubtful about how she'd go about it. Also, there seem to be limits to what tests a GP has the authority to order, and we can only hope that the ones Amy wants will turn out to be among them. Has anyone else tried such an arrangement? Any advice, if so? Two other useful bits of information I've come across: Biolab ( www.biolab.co.uk ) and The Doctors' Lab ( www.tdlpathology.com ) in London are able to run PANS-related tests on blood samples, if your local practice don't know where to get them done. The PANDAS Network site have a list of support groups and volunteer contacts in different areas at http://www.pandasnetwork.org/research-resources/support-groups/ ; scroll down to the bottom of the page and you'll find ones for outside the USA. I've found these e-mail addresses invaluable when there's a UK-specific question I simply can't find answers to anywhere else - that's who gave me the information about the testing labs.
  9. Wombat140

    a message of hope

    That sounds terrible, you all have my sympathy. Glad if some things are helping. Can I ask, how DO you find out what throws the immune system - how did you know that that was what had happened with the ibuprofen? Sounds like something we should know!
  10. Thanks! Hmm. Well you see our pandas "doc" (Amy) can't order the tests, because she hasn't met me and apparently that rules it out, you can't legally prescribe medicines or order tests unless you'e met the patient at least once - at least that's what she seems to think. So we have to find some way that oru GP can order them. I did hear from somebody else though (in the UK) who does seem to reckon that it's legal for any doctor to order any test they want to, and it's up to them to decide whether they think they can interpret/make use of it. So I'll let her know that; it's possible someone just told her the wrong thing. Fingers crossed! By the way, how does your GP offer alternatives to expensive tests? I mean, how would they know what are suitable alternatives, do they know something about PANS themselves?
  11. Ah, well, thank you very much for trying. It's not about whether the GP "can refuse" - at least I don't think so; she seems to want to give it a try, but I have to convince her that she's *allowed* to do this. Facebook: Good thought about false name but I simply daren't join Facebook, anyway, for reasons above - I don't trust myself and I know from experience that I'm right not to trust myself, it's no good trying to kid myself that it wouldn't be a disaster because it actually would. Amy did in fact give me e-mail addresses for a couple of other parents in the UK who've worked with her, and I've been asking them and they've been able to tell me a few things that might be helpful - so I do have something. Neurologist: Not paediatric, I'm grown up. How would a neurologist help? I actually did see a couple of neurologists the last time I was trying to get treatment for PANS, they'd both heard of PANDAS but didn't know much more about it than that and said they couldn't really suggest anything. Do you think they might be able to prescribe the tests and things, or something? I'd been thinking that they wouldn't be able to, because all the tests and medications and things relate to immunology or germs, not neurology, so it wouldn't be their department any more than my GP's. Do you think I might be mistaken on that one? Have you or someone else actually had these kind of tests ordered by a neurologist (who isn't also something in infectious diseases/immunology)? By the way I've only just spotted that you're a new poster. Welcome to the forum and thank you so much for coming to my rescue!
  12. I'm so sorry, I'm not on Facebook, everyone keeps referring me to Facebook (though I think this is the first time I've heard of there being a UK-specific group) but I simply daren't join. I'm terrible about getting addicited to forums and such, even normal forums, it causes serious trouble in our household me holding everything up by going on an hour or more later than I mean to on forums, and of course Facebook is specifically *designed* to manipulate you into spending as much time as possible! Plus not private and all that of course. You couldn't possibly very kindly ask them a question for me, and pass on any useful replies, could you? It would be a great help. I've got some specific questions at the moment. 1. Our GP feels she needs to know more about Amy's medical qualifications - just "nurse practitioner" doesn't seem to be enough to satisfy her on this point. (She says American qualifications aren't exactly like British ones, in any case.) We have asked Amy about this but she doesn't seem prepared to add anything. How can we sort this out? Any ideas? 2. Our GP says that she can't order tests that she wouldn't know how to interpret (i.e. most of those that Amy has suggested). Our idea, of course, was that Amy should be sent the test results to interpret. We can't find out from our GP whether the problem is A: that she doesn't trust Amy's expertise because of the qualifications question, or B: that she's actually forbidden to do so by regulations anyway, i.e. that if Amy's the one who can do the interpreting then the regulations require Amy to be the one who orders. 3. Even if we did manage to get beyond the testing stage, presumably our GP would also have objections about the prescribing she would have to do on Amy's advice (would she, in fact, be allowed to do it by the regulations? - we just aren't clear on this). I think (she's never exactly confirmed this, but I think) that what's on her mind is that she's not in the least qualified herself to pronounce on any of this, so by experimenting with this stuff she'd be risking getting into huge official trouble, even if everything goes fine. They're so tightly regulated these days. So what we mainly need is some kind of assurance that Amy is demonstrably legit and that it is legal for her to work with her in this way, and we need to be very clear about all the facts about this. What I need to know is, I suppose, has anyone else working with Amy (or any other practitioner) without having met her in person been able to do any of these things, so that if so, I know that it's allowed? P.S. We're in Lancashire, if that helps.
  13. Wombat140

    Gene Mutation and Immune Dysfunction

    Fascinating (and I love the name of that website, only just noticed it! :-D )
  14. Wombat140

    a message of hope

    I'm never sure why this cheers people up.
  15. Wombat140

    Aug/September Tics

    Off-topic, but just want to say that there's a thread of gluten-free diet recipes in the "Diet and Gastrointestinal" section of this forum, if you want them.
  16. We have a problem. Amy Smith's recommended a lot of tests (the usual things like ASO and the Igenex Lyme disease test). She contacted my GP to ask her to order them (Amy can't legally give the order herself because she hasn't met me.) But my GP says that most of those "aren't available to her as a primary care practitioner". Has anyone else been in this position? If so, did you find any way to deal with it? PLEASE, PLEASE ANSWER, even if you only have something tangentially relevant or an idea. I feel like we're totally on our wn.
  17. Wombat140

    Migraines during flares?

    I used to haev migraines and they stopped shortly before the PANDAS-like symptoms developed. They've been reappearing recently though. Which, of course, is all completely different and not a lot of help.
  18. Wombat140

    Our experience with Repreeve

    How's it going vvny?
  19. Amy Smith of California has recommended us this ecological medicine doctor in London, Dr Damien Downing, who she says is "brilliant" but I can't find anything on his website about PANS, and a web search on his name and "PANS" or "PANDAS" turned up nothing, though he does seem to have done a lot on autism but mostly talking about heavy metals and vitamins. Has anyone been to him or heard anything about him? I did come across a few mentions of him on forums and things while I was doing the search, all from people saying they'd got no better or got worse while seeing him.
  20. Off the top of my head, I'd start with the actual symptoms - things like Gpookie mentioned, e.g. what the actual problems are, the fact that they seem to coincide with infections (if they do - can't remember what the details are with yours), things like that. And then only get on to the more "controversial" sort of tests after that, if she's still asking questions. Give her a chance to have a think about the symptoms for herself with an open mind before possibly provoking a reflex reaction by mentioning PANS!
  21. Hi Momonmission, welcome to the forums. Sorry nobody's replied to this before. How are you doing at the moment? Have things improved any further? I don't really know the answer - never been in quite that situation myself. But hopefully somebody else can reply.
  22. List of practitioners so far (will try to edit as new ones are posted): Practitioners outside the USA National Severe OCD/BDD Service, London, UK - NHS-funded service for patients with OCD or BDD who haven't responded to other treatments (CBT or SSRIs). Requires a referral. Stated "We have conducted research into PANS and could discuss this with you if you are referred to us." As of August 2016 has a waiting list of several months. http://www.swlstg-tr.nhs.uk/our-services/specialist-services/ocd-bdd-service Dr Isobel Heyman, Great Ormond Street Hospital, London, UK - Child and Adolescent Psychiatrist, OCD expert. Does look at PANS, I'm pretty sure, but children only. Prof Peter Hill, London, UK - child and adolescent psychiatrist. I've heard a PANS parent mention that her children were now being treated by this doctor and Dr Novelli, but I haven't dealt with him myself so can't swear to exactly what he does. Dr Vas Novelli, Great Ormond Street Hospital, London, UK - paediatric infectious diseases specialist. I've heard a PANS parent mention that her children were now being treated by this doctor and Prof Hill, but I haven't dealt with him myself so can't swear to exactly what he does. Dr Rajendra Sharma, London, UK - http://www.drsharmadiagnostics.com Will offer long-distance "case study" consultations if you can't get to see him in person: Breakspear Medical Clinic, Hemel Hempstead, Hertfordshire, UK - https://breakspearmedical.com/ Don't mention PANS specifically on their website, but have been recommended to me by a couple of people and they definitely do do chronic Lyme disease; the Director, Dr Jean Monro is an ILADS (International Lyme and Associated Diseases Society) member.Dr Ann Cruikshank, Cheltenhma area, UK - http://www.winchestertravelhealth.co.uk/ I don't know anything about this lady except that she's another ILADS member in the UK, I wrote to them and those were the only UK members they could tell me. Practitioners in the USA who offer long-distance consultations Amy Joy Smith, NP - http://www.amyjoysmithnp.com/ There's some talk of Amy visiting this country to see patients in February or March 2017. I'm not involved with that so it's no good contacting me for further details, GMT111 might know more - see this thread http://latitudes.org/forums/index.php?showtopic=24587#entry184983 - or Suzanne Ayres - see PANDAS Network website mentioned in previous posting. Practitioners who don't do PANS when last heard from Prof David Veale - when contacted in August 2016 said that expert opinion was that PANS should be treated by standard OCD treatments, except to treat any obvious current infections with antibiotics. Expressed interest when I said I thought the mainstream opinion has moved on since then; I sent some references at his request. Prof Naomi Fineberg - was recommended to me by Peter Hill as someone who treats adults, but told me (in August 2016) that she "does not have much experience with treatments for PANS other than standard OCD treatments, e.g. Plasmapheresis". (Encouraging that she does seem to have heard of Plasmapheresis as a treatment for PANS.)
  23. This is only tangentially relevant, but people who take too much vitamin B6 (we're talking really high doses, like 50 mg per day or more in adults) occasionally get that symptom of "pins and needles" in hands and feet, and if you stop taking the B6 and it hasn't been going on for too long it will resolve itself. (There's actually a technical name for that symptom - it's called peripheral neuropathy). I'm not saying this is anything to do with B6, but that shows that those symptoms don't always mean permanent nerve damage, they can happen even when the problem is only something that's temporary. Incidentally, it can also be a symptom of deficiency of B6, so maybe it might be worth trying your daughter with some B6 to see if it helps with the "tickling"? (That doesn't rule out PANS being the cause. Nerve processes actually use up B vitamins and all kinds of things that make the nervous system work harder, e.g. anxiety, can deplete B vitamins, so it's possible that the PANS making her nervous system jump through hoops is taking up all her B6 supplies and that's what causes the "tickling".)
  24. Wombat140

    Where to go now?

    Oh, and have you read the e-book ("Your Child has Changed")? It's a good introduction to PANDAS and PANS, worth the $10 if you're new to it - and good for giving to doctors who are new to it, too. It has some basics on other infections that aren't streptococcus, too, and where to go about that.
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