Wombat140

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.

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

I'm never sure why this cheers people up.

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.

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.

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.

How's it going vvny?

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.

Anyone?

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!

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.

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.)

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.

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".)

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.

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!

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.

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!

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.

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.

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.

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!

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!

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!

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.