Wombat140

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!

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!)

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

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.

Oh, that would be great if you could let me know, thank you very much. Yes, I've tried the e-mail form on that website - that was the one that did once get a reply, back in May, but I've tried it again since with no result - and I've tried the e-mail address that the reply to that came from, and my mum's tried phoning. That's encouraging to hear, anyway!

I looked up Pacific Frontier but I'm afraid it is the same number that's on Amy's own website and that we've been ringing and not getting any answer from. While looking them up, I also found a frankly terrifying set of Yelp reviews for the practice, which have made me think twice about going anywhere near it. https://www.yelp.com/biz/pacific-frontier-medical-redwood-city-4 But I don't know who else to go to! Please can anyone suggest anyone who treats adults (for PANS, Lyme disease or both) and will treat long distance?

Just phoned the number, and it's rather odd. Not only does ringing extension 0 lead to an answerphone message, but so does ringing the main "front desk" extension, or any of the others. Tried yesterday and today with same result. (Yes, I did take account of time differences, we've been calling at what works out at around 10-11am in California time.) Is anyone in contact with her, or with anyone at that practice? Has something happened, have they closed down or something?

What's ready-made apple sauce like, I mean, how thick is it? They don't sell it in this country. I've got a recipe for sugar-free chocolate brownies that calls for two-thirds of a cup of ready-made apple sauce, and I'm wondering how many mashed-up apples I need to allow instead. (Or possibly bananas, that being easier to mash.)

Thanks TG21. My mum's going to ring her up and see if there's any answer. Wish us luck! Yes, I was just puzzled when you said that it might make it more difficult to get non-standard providers - sounded as if you thought you couldn't still go to a private provider the same as in America. Most of that long explanation was more ranting than anything, anyway; I've been very exasperated with the way they are messing us about! I feel disloyal saying all this in front of Americans, I feel you'll all be saying "thank heavens we haven't got a state health service"! I should say that getting treatment on the NHS is NOT usually like this. But it's mental health, anything to do with mental health is hopelessly underfunded and understaffed and, as I say, it's notoriously got much worse under the new government. And of course PANS is a thing that nobody below the most specialised levels has even heard of anyway, so the local doctors don't know who to refer you to. I have in fact just found an Institute for Functional Medicine or some such name, which seems as if it runs Functional Medicine, and they list a dozen or so members in the UK - but most of them seem to be nutritional therapists and such, people who mainly treat people who aren't ill, and nobody mentions any knowledge of PANS, Lyme disease or anything like that. Glad I checked, anyway.

Good luck!

Will any of them treat people in other countries long-distance?

I'm assuming that this is only useful if you know you do have an allergy and what it is? And what do you mean by your son "coming up with" food coloring sensitivities? That's great news though and I'm really pleased for you. Rather remarkable if it works, I'm enjoying reading this just out of interest!

While you're about it, I need telemedicine visits too - I'm in the UK, can't travel and can't find anyone who does PANS, or if I do I can't get hold of them. So if anyone can tell me anyone who does long distance (and treats adults) it would be very much appreciated.

What's "x.0"? Don't think I've come across that before. (I mistook it for some kind of smiley the first time you did it!) One of those "If you want to speak to so-and-so, press SQUIGGLE" systems? Well, I'm not exactly sure what "single-payer" means, but essentially, in this country you have two choices. The National Health Service, the free state-funded service, employs its own doctors directly. If they do provide for the particular condition/treatment you're looking for (bit like the question of whether your insurance company will accept that PANDAS is a real thing), you're sitting pretty, except that the waiting times have been getting worse and worse ever since the Conservatives got into power 8 years ago. If not, or the waiting time is just too long, then you're still free to go to any doctor you like and pay for it yourself - either from your medical insurance if you have it (most people don't since the NHS covers so much) or else out of pocket. That's what we'd almost certainly be doing, and we're quite resigned to doing that, but we can't FIND anyone. It's a case of "Shut up and take my money!" There actually is an NHS option that MIGHT deal with PANS in adults - that is, it's a specialist NHS-run OCD service, which is intended for patients whose local mental health services haven't been able to do anything for them. They seem to have a free rein to try whatever treatments they think best and I've been told that they do have "someone who's done research on PANS". But you first have to be referred to them by your local mental health team - and they have to pay for it, essentially the local team are contracting the job out to the specialist team, so a load of committees and people have to be convinced first that this is really justified - and then after that they have a waiting list 3-4 months long themselves. I am going through that process, but I've still only got as far as being assessed by the local psychologist, which is taking an incredible number of appointments - she's coming for the third time today, wish me luck and that that's the last one!! - before they even start discussing whether I should be referred or not. So... that's why I'm trying every which way I can to get treatment privately.

tj21: If I knew of a Functional Medicine doctor in this country, I'd have contacted them. I've been at this for a LONG time. I don't even know what it would be called in this country - I've certainly never heard of it here under that name; this forum is the only place I've ever encountered the phrase. Is it the same thing as Environmental Medicine? There is a professional association for that in this country, and I did e-mail them a while ago, but seem to have lost the reply - I assume it can't have been helpful, or I'd have done something about it. SSS: There isn't a phone number above. Could you PM it to me? Or do you mean the same one that's on her website? I'm glad if you think it's worth trying again, I was starting to think she must be missing without trace. I THINK I have a doctor who can take her recommendations. My family doctor is very much on side, thank heaven, and has said she'll be happy to make out prescriptions for anything she CAN prescribe; however, she did say she doesn't have the authority to prescribe some things, not being a specialist, and I don't know how likely it is that some of the things Amy Smith might recommend might be among them. I was going to ask Amy (or Mike), if I can only get in touch with them! Thank you very much for the good wishes, both of you - it's great to have company!

She is still around, then, at least? Glad to hear that. You reckon there would be a long waiting list, then? Does anyone, by any chance, know of anyone ELSE that will do long-distance consultations for PANS, or indeed anyone in the UK who does PANS? (would probably still have to be a long-distance one, given the difficulty of transporting me anywhere.) I really am desperate to get some treatment SOON - I don't know if I can wait months. Not as in I'm not prepared to (though that too, of course), but as in I'm not sure whether I'll still be here then. On top of everything else, I've developed a weird kind of random-adrenaline-overload thing in the last few days and worry that whatever is wrong with me is slowly poisoning me.

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.

Hi Rachel, I just wanted to say welcome to the forum and that your story has given me hope which was sorely needed at the time. I'm 25 and have been having trouble since I was 13, and though I know you're far from having got there yourself, you say some things you've tried have made a big difference to your symptoms which is really important for me to know - I didn't believe anything could after so long a time, I'd been despairing that perhaps it would be all permanent by now. I don't know why exactly I thought that - I've hardly tried any serious treatments yet! I suppose I get that impression from having been pursuing treatment for so long and not got anything out of it - but most of that time has been spent trying to get treatment or a PANS-literate doctor and failing! I think - don't want to tempt fate, but I THINK - that I'm definitely on the trail of somebody now, so wish me luck.

There have been a couple of threads recently with several adults with definite or suspected PANS or PANDAS - so you might want to have a look at those. (I'm one of them!)

Congratulations!

Gluten-free diet: if you want to give it a try, I've tried it myself and it's not actually as hard as it looks once you understand a few of the tricks. Bread and pasta are the main things you definitely have to find replacements for. If it's only for 10 days to start with, maybe you could just do without those for the 10 days, until you see whether it's helping or not? One thing to remember is that rice doesn't have gluten and neither do potatoes, and you can buy rice cakes (useful instead of bread, as they're easier to get than proper gluten-free bread) and rice noodles, though check the ingredients list on the label to make sure they don't have wheat in them as well as rice. And of course, foods that don't involve any grain won't have gluten, so vegetables, fruit, eggs, milk and cheese, meat etc. are all safe (that is, if you buy them plain and uncooked. If they're processed in some way, e.g. pre-cooked or with a sauce, you need to check the ingredients, but you'll often find it's OK.) It's not true that it's in "everything". It might seem like it at first, but check ingredients lists and you'll be surprised. Hope this is useful. By the way, there's a section in this forum for discussion of special diets ("Diet and Gastrointestinal Issues"), you might find some useful previous postings there if you decide to try the gluten-free diet - look further down the main index page and you'll find it.

Any biscuits made with rice flour tend to come out as shortbread, even if they aren't. Pretty good shortbread too. I've noticed rice flour among the ingredients of some ordinary (wheat-based) commercial shortbread, in fact, so evidently this has been discovered by other people too!

Chocolate muesli - I've just invented this. Add about one heaped teaspoonful of cocoa powder to a bowlful of unsweetened muesli and stir it in as thoroughly as you can before adding the milk. (As usual, make sure to get "cocoa powder" rather than "drinking chocolate" which has sugar.) I wasn't sure if it'd really work without any sweetening at all, but it really does. It doesn't even need to have raisins if even those are too much sugar for your kids - I know this because we've got a particularly miserly brand of muesli at the moment, and the day I tried this I got literally only two raisins in my bowl :-D

Hi Tiger, welcome to the forum. I'm in the UK too and struggling to get access to PANS treatment (or even testing). I've seen a few UK people on here recently, all puzzled, maybe we should start a UK Information thread and swap what we can find! It may be too late for this now, as it says you should do it within 8 hours (though it's not clear whether that means for the test to be valid, or just to have the best chance of avoiding infection), but for future reference, here's this testing kit that I happen to have seen in a catalogue we get: http://www.qwerkity.com/tick-test-prod17361/ It looks as if you don't even have to post it to anyone - it's a kit you use at home and see the results. Glad to hear your GP gave you the antibiotics, anyway - that makes life easier! Most likely the tick wasn't carrying Lyme disease anyway, or if it was it wouldn't necessarily have infected your daughter - I read that the tick usually has to be in place for 48-72 hours to transmit the disease. Those were American ticks (deer ticks, Ixodes scapularis, which aren't found here) so I don't know whether the same is true of the ones we get here (mainly Ixodes ricinus), but it seems a reasonable guess that it would be.

Late reply, but I looked all this up a while ago, so I know the figures. Apparently the dosages for SSRIs fall into two groups - the standard dose range for Prozac, Paxil and Celexa (in America, at least) is 20-60 mg, whereas for Zoloft and Luvox it's 50-200 mg (well, actually 50-300 mg for Luvox). The consensus in older postings on here seems to be that for PANDAS kids a cautious level to start at is 2 or even 1 mg for Prozac etc., and 25 or even 12.5 mg for Zoloft etc., depending on the child's weight and whether they have a history of reacting dramatically to things. Do a bit of searching on here and you might find more. Edit: Having checked the case history I had in mind, I actually meant 2 to 1 mg of Prozac, not 5 to 2.5.