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Everything posted by Wombat140

  1. 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.
  2. 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.
  3. Wombat140

    Our experience with Repreeve

    How's it going vvny?
  4. 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.
  5. 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!
  6. 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.
  7. 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.)
  8. 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".)
  9. 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.
  10. Wombat140

    Where to go now?

    Welcome to the forums Jen B. I agree! I appreciate that even 10% of what PANDAS can be could be quite nasty though, so I understand why you're asking. I've heard of children being on Augmentin for at least a year at a time (could be longer, but I can't remember, we lent our copy of "Saving Sammy" to a psychologist and she still has it). I know that children who've had rheumatic fever are often kept on Augmentin indefinitely as a precaution, because the possible problems with that are outweighed by the risk if they get streptococcus again, so it's not a medically unprecedented thing. A PANDAS specialist I saw a while ago seemed to be worried about me taking it for more than a couple of months at a time, but mainly because he couldn't monitor my liver function (I had a needle phobia at the time). I get the feeling that if I'd been able to have the liver function tests regularly he'd have been a lot more comfortable with carrying on with it. What tests has your daughter had, what did they show? Has she had any tests for signs of other infections that aren't streptococcus? It's possible for other infections to be involved instead of or as well as streptococcus, and they don't all respond to the same antibiotics. Lyme disease and Mycoplasma pneumoniae are among the better known ones. So if she turned out to have one of those, then changing to a different antibiotic might make the difference. Again though, if you've found something that reliably works at all, then that's a big step in the right direction! Good luck!
  11. Wombat140


    I'd just add, it's always recommended to change only one thing at a time if possible, giving it at least a couple of weeks to see what effect one supplement has before adding another. I'd say this matters especially with NAC because I do know that a minority of people find that NAC doesn't agree with them and makes them worse instead of better, so you want to be able to tell unambiguously whether your son's one of those people or not so you know what to do.
  12. Wombat140

    Multi Vitamin

    What are the doses? It's always important to know. In milligrams, I mean - number of pills doesn't really convey anything because different brands will have quite different amounts per pill. Glad you've found something that's working and thanks for passing the information on!
  13. Wombat140

    nutrition tests

    Where did you come across them? The only one I know off-hand myself is the kryptopyrroles test. It tests for a (still disputed) biochemical glitch called pyroluria, which means you excrete a lot of zinc and B6 in your urine and may need to take zinc and B6 to make up for it. It's been said to be correlated with several different mental conditions (not surprising, if it does exist, since deficiencies of zinc or B6 are definitely known to cause mental symptoms), but as I say, it's still in dispute whether it actually even exists. Hoping other people can contribute about the others.
  14. The brownies were a great success, so here's the recipe I used (modified a bit from the original). They're quite easy. It's not completely sugar free the way I did it, but pretty low in sugar; the original recipe uses stevia and sugar-free chocolate chips, in which case it is sugar free. 1 American cup is 240 ml, half an American pint or slightly under half a British pint, by the way. Makes 12. Prep time 10 minutes, cooking time 20 minutes. 1 smallish banana 4 tbsp milk 4 tbsp / 100 g butter or coconut oil, melted 1 egg (can omit this or use a substitute if allergic, according to original recipe) ---- 125 g / 1 American cup plain flour ("pastry flour") (can use gluten free; if so add 1/2 tsp xanthan gum) 65 g / 1/2 American cup cocoa powder 1/2 tsp baking powder 1/2 tsp salt 1 tbsp brown sugar: that's what I used and it was plenty. The original recipe says 1 1/2 tsp pure stevia extract or 4-6 tsp Sweetleaf powdered stevia, but according to Sweetleaf's website that's supposed to be equivalent to 10 tbsp sugar, so I think the original recipe has overdone it! ---- 1/2 cupful chocolate chips (optional) 1/2 cupful chopped walnuts (optional) 1. Preheat oven to Gas Mark 4/350 F/180 C. I put the butter in there to melt. 2. Push the banana through a sieve. If you just mash it the mixture comes out lumpy. 3. Add the milk, butter and egg and whisk together. 4. Add the flour, cocoa, baking powder, salt and sugar and mix well. 5. Stir in chocolate chips and nuts if using - keep some chocolate chips back to put on top. 6. Line an 8" x 8" baking dish with parchment paper. Pour batter into dish and top with a few more chocolate chips. 7. Bake for 20 minutes. 8. Allow to cool for 10 minutes before slicing.
  15. Another recipe thread. What are your favourite sugar-free recipes you've discovered over the years, the ones you use all the time? Or any other handy ways of doing things you've discovered, that aren't actually recipes? We can pass them all on here. The person who posts the best recipe... er, is a clever cook. :-) Also, you could post your requests for things you haven't found a good recipe for yet, and see if anyone can step forward with one. That's all the special diets I can think of; if anyone else thinks of one that ought to have its own thread, please start one.
  16. Here: Repreeve update? and the original threads: A new natural approach to tics and stuttering and Our experience with Repreeve To clarify, Repreeve's not related to this other treatment (the allergy one) as far as I know.
  17. I didn't know you were a member! Ouch, that really does sound like a mess, sorry to hear about that. I hope you've been able to get things somewhat back to normal now at last. Wanted to say thanks for being so thorough and attentive once we did get the appointment arranged. It's such a lovely change to be working with someone who really talks to you, like anyone would innocently expect. We've been knocking our heads against a long line of practitioners who don't definitely acknowledge that you even said anything, or else come back with an answer to a completely different question, or something poker-faced that you can't attach any meaning to at all - it seems an astonishing luxury to be able to hold such a sane, human conversation with Amy and her staff! haha EXACTLY, perfectly sums up the kind of chaos you're up against with PANS! and that's why it's so great to be able to work with a nice, helpful person who says "OK, how can we arrange something", rather than making bleeping noises and repeating their previous statement!
  18. I've been trying to get into contact with Amy Smith of California for months, having heard that she will consult long-distance by phone. I sent a message through the contact form on her website first of all and got a reply that suggested it might be possible. I e-mailed back asking another question, this was on June 6th, and got an automated reply saying that she would be away from the office from July 14th to August 1st, and that's all I heard. I e-mailed again on 20th July and got the same response. That's all I've had. Does anyone here see her, and if so, have you heard from her lately? Is anything the matter at her end? Honestly I don't know where else to turn if I can't get to speak to her. I'm desperate for somebody to try and treat me, and I've been following up all the leads I can find in this country, and just been getting stupid answers.
  19. The scientist in you should be more careful what she takes for granted, homoeopathy almost killed me. (Well. It COULD just have been a time coincidence, but I am always convinced it wasn't - the deteriorations did coincide so closely with new remedies, over and over again. Not homoeopathy's fault as such; while I was seeing another homoeopath some years ago I was better, temporarily, than I've ever been since the OCD started - but this fellow was a maniac, I'm afraid. The worse I got, the more firmly he told me to keep taking more doses immediately. I think he'd just got it so firmly into his head that the "initial aggravation" should be over by that time that he just filtered it out when I kept telling him that I was still worse! If I ever get involved with that again, I'll know never to take another dose until the "herx" has resolved, no matter what the homoeopath says. Let that be a lesson to all of you.) But yes, grain of salt will be duly observed! (The IV vitamins were something I was rather dubious about myself, not that that's a practical question since I'm sure we couldn't get that done here!) Glad you think it's a good bet in general. Thank you!
  20. We always halve amounts of sugar too. Once you're used to eating less sugary things, the amount of sugar in ordinary recipes just tastes far TOO sweet! I wonder if those jars of baby food apple puree would work instead of apple sauce in recipes? I'll let you know if the brownies work with mashed banana!
  21. No problem, glad if I helped. Hey, I'd forgotten you were from the UK too! Now I think about it, I do remember seeing you around the forums. Haha, if that's the situation then I think the not eating any veg is the thing that wants talking about with his diet, not the GF/CFness! Although if he will eat fruit instead then I suppose that'd be not such a problem.
  22. Amy Smith IS around, I've managed to make contact with her office again and we have an appointment for next Wednesday! I can hardly believe that I can get seen so soon and with so little fuss, after all these NHS people talking about it taking weeks just to approve my referral to somewhere! The trick seems to be to leave a message on their phone asking them to e-mail you. I think their e-mail inbox must have got so clogged when Amy went on holiday in July that they still haven't caught up, although they do seem to be answering my e-mails again now, having realised they're there - I think they were getting overlooked in the muddle before. It occurs to me that since it's a Skype appointment, one good thing is I don't run the risk of getting dropped (like one of the people in those horror reviews) if I displease the practice manager, since she won't be meeting me!
  23. No, that's what I said, that's the whole problem - we've been only too keen to go private (having seen the length of time it takes for the NHS to arrange something unusual like that), but whoever pays for it, I hadn't been able to find any doctor in the first place. But it's all right, because I've been able to get into contact with Amy Smith again and we have an appointment for next Wednesday! I can hardly believe that I can get seen so soon and with so little fuss, after all these NHS people talking about it taking weeks just to approve my referral to somewhere! The trick seems to be to leave a message on their phone asking them to e-mail you. I think their e-mail inbox must have got so clogged when Amy went on holiday in July that they still haven't caught up, although they do seem to be answering my e-mails again now, having realised they're there - I think they were getting overlooked in the muddle before. "Post-infectious autoimmune encephalopathy" is one I've not heard before, thanks, I'll try and remember that. And another research paper's always interesting. I'm not sure what good it would do to "get a decent enough neurologist to acknowledge" that I had PANS, since if they weren't someone who dealt in PANS themselves, surely they wouldn't know what to do about it if I did? (May sound odd to be still asking since I've now got an appointment, but after what I've been through in the last several months, I'm always nervous that things might fall through yet again and I'll need to start looking again!)
  24. Hi Tiger. As far as the nutritional side goes, I can't see that being off dairy products and gluten would in itself be bad for your son's health - I mean, thinking about it, there are many people who have coeliac disease and have to follow a gluten-free diet for life and I've never heard of any suggestion that that means they're nutritionally worse off. And similarly, lots of people are vegan or lactose intolerant and are OK. Of course, you can be eating a bad diet whether you eat gluten or dairy products or not. The important thing would be to look at his diet in general and just see whether there is anything missing from it or not, for instance, I suppose, whether he's getting enough calcium without dairy products. (There's some in some other foods and there are various fortified foods, but I suppose the simplest way to make sure of that one would just be to put him on a calcium and magnesium supplement, if he'll swallow it). If not, then what he's eating is OK, gluten or no gluten. I do see the point about it being socially awkward though. I don't know what to suggest about whether to re-introduce them and how you'll know whether it's having an effect. (The fact that he's better but still has some episodes logically suggests to me that it was gluten and dairy but also something else, rather than, as your partner said, that gluten and dairy have nothing to do with it - in that case it shouldn't have improved at all.) Hopefully someone else will reply. While we're talking about food, would you mind answering a question I asked about apple sauce? http://latitudes.org/forums/index.php?showtopic=24242#entry184891 Reply to that on the thread it's on, please, not this one - Sheila's keen for us to drum up a bit of activity in the other forum sections.