Wombat140

No probs. It's here: http://www.justanswer.com/autism/5acz6-registered-dan-doctors-uk.html Glad to hear the test found something, actually - since that means there's something that can be done about it! I've had a reply from one of the doctors I wrote to, Peter Hill. He suggested somebody in Birmingham, which might be possible. Incidentally, he seems to take the view that PANDAS should generally be treated the same as any other OCD or TS, so that might be as well to know for anyone else looking for a doctor. At least he's prepared to believe it exists, though! I'll keep you posted.

Healthspan are a good brand of supplements in my experience (mail order - Healthspan Ltd, PO BOX 64, St Peter Port, Guernsey GY1 3BT or www.healthspan.co.uk). They may cost slightly more than some brands, but they're good quality and don't have any gunk in them (well, apart from some of the chewable tablets, those are always dicey). Could you tell me exactly what web pages you showed to the paediatrician, please? It's occurred to me that even if I go private, I'll still have to explain to my GP or someone to get a referral, and I'm having difficulty finding any web pages that summarise what PANDAS is. Mostly I just find long and technical research papers, or things that would only make sense to someone who'd come across PANDAS before.

Thanks very much Ozimum! I don't know how you turned up those DAN practitioners - I'd never come across half of them before. Unfortunately they're all down South, but well tried! I'll try contacting www.treatingautism.co.uk too. The doctors on the "Saving Sammy" list are the ones I've written to - if they don't respond my mum's offered to ring up and wheedle them in person. She is good at this. If there really isn't anyone, then maybe something might be possible over the phone - not sure how any tests could be done in that case, but maybe if the nurse at the local practice is willing to take a sample as a favour, we could send it ourselves to whatever lab the PANDAS doctor normally sends them to. Yes, we'd pay for anything up front (not many people have health insurance in this country because with the NHS we rarely need it) but that's fine. Thanks again, and if anyone actually does know someone in the north of England please tell me, it'd save a whole lot of time and faffing!

Welcome to the forum Dawn! Good to see someone else from the UK. I don't think I've even heard of hair testing for food intolerance. Where did you come across that? From what I can remember of what I found when I looked it up for myself, the IgG ELISA blood test (that's the one Mar used) is probably the most scientifically plausible. It's the same kind of test that doctors use for standard (IgE) allergy blood testing; the only question mark is over whether IgG antibody levels are a reliable guide to anything anyway. In the UK you can send for a home testing kit of that type from www.camnutri.com. If you send the sample away for them to process it's £111 for 40 foods or £160 for 60, but they also have a kit that you process yourself (which they say is just as accurate if you do it properly) that's only £65 for 46 foods. It's a bit fiddly, hence the discount, but doable. Couldn't say how well it works first-hand, as we bought one but then I never managed to prick my finger! If you're dismayed by Chemar's suggestion of an "integrative physician" you're in good company, I've never heard of them either and I did look them up as best I could! I don't think that name is used over here. I'm interested to know how you got the strep test, though. Did you manage to find a doctor who'd heard of PANDAS, or did you just explain things to your GP and persuaded them to give it a go? By the by, home-made cranberry lollies might not be as "simple" as you thought - some brands of cranberry juice are absolutely riddled with sweeteners and other additives because cranberries are so sour naturally. Sorry if you've already checked that. All the best Wombat140

Does anyone know of a doctor in the UK who knows anything at all about testing for and treating PANDAS? It would have to be in the north of England, actually, because with my symptoms the way they are, it would be impossible for me to stay the night anywhere and very difficult to use the train. Anywhere within 100 miles of Rochdale we could manage if we had to - as far as the Midlands or the Scottish border, and certainly anywhere in Lancashire, Yorkshire, Nottingham etc. I've written and asked a few PANDAS doctors (too far away themselves) if they know anybody, but I'm afraid I won't get an answer - I didn't with the last batch of people I wrote to. So if any of you do know anyone, I'd be very grateful. Many thanks Wombat140

I wrote to ARI a while ago but no answer. I've written letters to five PANDAS-friendly doctors in the UK (all too far south for me to get to, since with the way things are at the moment I wouldn't be able to stay the night anywhere), to ask if they know anyone I could get to. That was last week so I'd expect any answers to arrive this week unless they forget about it for a bit, so fingers crossed very hard indeed... We've just been reading "Saving Sammy". It's encouraging in a way, because he had almost exactly the same symptoms as me only worse (though for a much shorter time) and antibiotics got rid of them. Even the unusual things - for instance he didn't have the episodic symptoms, only gradual variations, and neither do I; he had slightly Aspergic tendencies all his life, like me, but the compulsions still turned out to be PANDAS; and his "invisible wall" thing sounds just like the way I used to get caught on lampposts - God, that was awful. Can anyone recommend another book about PANDAS? "Saving Sammy" has told us a lot but it doesn't have that much detail, about which tests were used and so on, and also I've noticed a few slight mistakes (said Augmentin was penicillin with clavulanic acid, in fact when I looked it up it's amoxicillin with clavulanic acid). So I'd like to know a bit more about it, especially if we end up having to tell a doctor about PANDAS instead of vice versa.

Thanks for the reply!

I found what looks like the thread you were talking about ( here ) and Dr. T says there that he's seen a lot of PANDAS cases that start as abdominal migraine symptoms. Now, I'm pretty sure that my OCD dropped from the sky not long at all after my migraines stopped. Coincidence? I really am going to look into PANDAS. As for how I knew they were abdominal migraines, that was just what the doctor said when my Mum took me to see her about it. Apparently migraines in children most often do go to the stomach. (Consisted of feeling headachy and generally rotten for several hours, then being violently sick several times - the headache would disappear as soon as I was sick, for some reason.) Funny you should say that about the gut recovering over months not days. My OCD and tics tend to vary by the month or week, rather than days - that's why I've never been able to identify any triggers. I'm usually flummoxed by trying to read through the boards, too...

Hmm, well, I don't think I could really do that with the diet I was on this time, leaving out all common allergens. It just doesn't do, nutritionally. I lost quite a bit of weight I couldn't really spare, as it was. I'd have to have some idea what were the "suspect" foods first, so that I could just cut out those and hopefully have a reasonable amount left. Not really sure how I'd get that, since umpteen different kind of allergy and intolerance seem to be possible culprits, but I suppose a standard (IgE) allergy test would be better than nothing? Was that what your son had, Mar?

You reckon it still could be PANDAS, then, even with some of the symptoms missing? That's encouraging! And having atypical things is one thing that does seem to run in my family :-D I only said that about symptoms going down to zero because I've seen that mentioned as one characteristic of PANDAS even without treatment. Thanks for advice about where to start, although of course first catch your doctor...

B vitamins are good for lowering cholesterol, I've forgotten the details though. Of course it might not help with the OCD if, as some posters have suggested, the high cholesterol is a symptom of something else that's the real cause, but it might be worth trying. I'm not sure that red yeast rice makes much sense as an alternative to statins, since as far as anyone knows statins are its only active ingredient!

That's funny. My OCD and tics are often less for a few hours after I've vomited - even when it seems to have been a return of my old abdominal migraine, rather than any kind of bug. I don't know what kind of biological nonsense THAT is.

That's a help, thanks very much! I don't think I'd ever heard of the PANDAS Network before. I'll write to ARI too if it comes to it (they seem to have no e-mail address for some reason). I'm not sure we really have a "local autism community"... There's the club I go to on Tuesday nights, but a lot of the members are (in the nicest possible way) not easy to discuss anything complicated with. Half of them are hyper and I'm not very good at introducing a subject into conversation anyway (Aspie). One of the organisers might happen to know somebody, though, if either of them have a spare moment to talk. Worth a try! Trouble is, the more I read about PANDAS, the more I think I don't quite fit the criteria. I certainly had "sudden acute and debilitating onset" of compulsions and sensory sensitivities (which were also mentioned), and I've had tics since, and "inability to concentrate" as a natural consequence of all this. But I didn't have the emotional things and there was no infection at the time (that I know of). And although the symptoms have often suddenly got much better or worse, sometimes over only a few days, they've never been down to zero since then. On the other hand, I still don't believe that a perfectly healthy child, even one with moderate Asperger's, can become a gibbering, head-banging wreck overnight (it was overnight) for no reason at all. I'm going to try the N-acetylcysteine before I do anything else, anyway, so that gives me some time to look into all this. Thanks again Wombat

Clomipramine isn't even an SSRI (I think it's a tricyclic), but it has been known to help with OCD all the same. In the UK, at least, it's usually used only when an SSRI has been tried and hasn't worked well enough. I don't know about in children.

Just to say thanks very much, both of you. Forgot to post before. Trouble is, I'm not sure how good I'd be at (a) explaining PANDAS to my usual doctor ( convincing her that it exists © explaining what to do about it, since I don't know much about any of those things myself. So I'd have to find a doctor who already knows all this, and that has me flummoxed. DAN were suggested a while ago, but they seem to have disappeared - www.autism.com/ari, which I've seen given as their webpage, doesn't even mention them that I can see. And I haven't a clue where else to try. I've just been reminded about N-acetylcysteine. Having looked it up, it sounds quite promising, and a whole lot easier than investigating PANDAS, so I think I'll try that first. All the same, if anyone can give me any advice on finding a PANDAS doctor in the UK, I'd be very grateful! Thanks Wombat140

Well, that's certainly a clear result. The sort of result I didn't have, really.

Thank you for the advice! Afraid I didn't get a very obvious reaction to anything - as I said, it was stupid of me to start the gluten on a bad day; things did go on getting much worse over the few days I was trying it, but I didn't know whether it was doing that anyway.

My tics and especially my OCD are appalling just now. I was going to say "I can't take much more of it", but of course I will, because I have no choice I'm wondering whether there might be some kind of PANDAS or other infection involved; I've tried just about everything else, and it did all start very suddenly when I was 13. But I haven't a clue what to do about it. Please can somebody explain the absolute basics of how you'd go about testing for such things, and who would do it? (It'd be especially good if anyone has information relevant to the UK). And if I did test positive for something, what are the actual treatments? It's quite hard, for somebody not in the know, to work much out from the postings on here! Thanks very much. Wombat140

Sad to say it didn't work out. Introduced beans and everything went fine, but then it got worse when I started gluten, or to be exact it was worse the morning BEFORE I started gluten and stayed that way. (Stupid of me to start on a bad day, really, but I couldn't wait to get back to more different food.) I stopped gluten pretty quickly, but more than a week later there was no improvement, so I left off the diet. I think it was just random variation both times.

Update: Presumably it was anaemia, because I stopped feeling weedy within a day of starting the multi again. Day 12, I ran out of patience and started having the other things that weren't common allergens and hadn't got salicylates/amines/glutamates/additives; that's rice/rice noodles/rice bran oil/rice cakes, leeks, spring onions, cabbage and celery. Mmm, real food! You've no idea what a difference it made. Day 19, still with no improvement, for no particular reason I tried to see how long I could hold out without doing any tics/compulsions. I only lasted a few minutes, but afterwards the tics/compulsions seemed to be knocked back a lot - as if they'd just been pushing their luck before . And over the next few days I went on trying and it's not perfect by any means - yet - but I've beaten it down to not half what it was. Now that wouldn't have happened a few weeks ago. That's why I hadn't made much of an effort for a while, because it wasn't making any difference. So maybe...! I wonder what took it so long? It could just have been holding out until the last moment, that'd be like it. Or it could have been that I wasn't kicking hard enough - I'd pretty much been sitting back and seeing what happened. Or it could have been the quinoa. I hadn't eaten any since about day 17, because I'd only really been using it to make crackers and once I was having rice cakes it was easier to have those. And it seems it's never actually been tested for salicylates etc., they just marked it as clear because most other grains are! Anyway, I'm now on day 26, still a lot better than I was. I'm going to make a start on the challenges, beginning with beans and lentils for a bit of protein. Hope for the best! Wombat140

Just to add to that; preferably CBT (cognitive behaviour therapy), which includes ERP and also some more "talking" type strategies (like the clouds thing). It has a better success rate than ERP alone. Some qualified CBT therapists will in fact be psychiatrists, but they aren't all, and not all psychiatrists know anything about CBT. If possible, find a therapist who has experience working with children and also with treating OCD. In the UK you can do that using the database on the website of the professional body, the BABCP, whose members are also all well qualified in CBT; I don't know the American equivalent off-hand, but I'm sure there is one. Sorry you and your daughter are having such a hard time, and I hope she's soon feeling better. All the best, Wombat140

Doesn't sound silly at all, I know exactly what you mean - these things that sound like minor details, to anyone who doesn't know the story...

I hope it works, then. Elimination diets without any clues are a pest, I know, I'm on one. Who are you getting the hair analysis done by?

Thanks very much. Incidentally, all beans, peas and lentils are "legumes" by definition, so that's a pest. (By "green book" I meant the book called "Natural Treatments for Tics and Tourette's" that Latitudes sell.)

On page 175 of the green book, there's that list of the commonest problem foods for neurological symptoms, as determined by a Dr Campbell, and one is "beans". Does anyone know whether it means green beans, or dried beans e.g. butter beans and kidney beans? And if the latter, would that mean lentils and peas as well? I don't seem to have access to the original paper. I don't suppose any of you would be able to get it, or at least know how it could be got? It's Campbell MB, Neurologic manifestations of allergic disease, Annals of Allergy 1973;10:485–98. Thanks very much Wombat140