Treatment options in Britain / outside America?

[Wombat140]

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.

[Wombat140]

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:

Under circumstances where a patient is unable to travel to see Dr Sharma the option to complete the New Patient form is offered. Any other information such as test results, specialist reports etc should be returned with the form. Dr Sharma will study the case and prepare a report and ask you to call/Skype him if he thinks it necessary for a phone consultation. As doctors are not permitted to prescribe for a patient who has not been seen and fully examined, Dr Sharma will prepare a report for discussion with your doctor or practitioner of your choice based on his study of your case and his considerations.

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.)

Edited December 28, 2016 by Wombat140

[Wombat140]

Anyone?

 

[Wombat140]

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.

[Lesannett1]

Hi there is a UK PANS/PANDAS Facebook group which might be of interest to you. We are all mostly in the same boat when it comes to getting a diagnosis or treatment in the UK but this may offer some support and ideas. A few also Skype with Amy. Let me know if you want to join and I can pass your name on. Whereabouts are you in the UK?

[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.

Edited November 2, 2016 by Wombat140

[Lesannett1]

I have asked how the ones who have been dealing with her have managed and they have all been to the US at least once a year to make it legitimate. I know as a group that they are trying to organise for Amy to come to the UK to enable us to see her without us all having to travel to the US. Apparently the gp could still refuse to follow Amy's advice even with a letter. Some managed to get the gp to cooperate but this is after a face to face consultation. At least one of them travels to the states to get the tests and prescriptions there. The fb group is a closed/private group so you could set up a fb account not even using your real name if you didn't want people to contact you. It has been really useful for us and I am not a huge fan of social media myself. I have learnt so much and some people are managing to finally start getting diagnosis and treatment. Have you asked your gp for a referral to a paediatric neurologist?

[Wombat140]

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!

[4Nikki]

We live 2.5 hours away from dd's pandas Dr. In Seattle. DD has a primary care doctor 25 mins away that prescribes some of the medications when other Dr. fell off DD care. We gave the contact information to do's pandas Dr. and they coordinate and share info like blood test results the ways any other specialist should do. We have Skype visits with the pandas doc. Every two weeks or a month depending on the need to make adjustments. The insurance is ok with Skype calls and it saves us a 6 hour day trip. We have many failed attempts to make appointments at children's hospital Seattle. I'm not sure if Dr. G at Vital kids medicine Seattle intakes adults. She sees DD now 19 but started her as a minor.

 

HTH

[4Nikki]

Oh we don't have a problem with blood tests any can be ordered directly by the pandas doc. There's no limitation on ordering tests it's just how they get paid for. Test can be expensive. DD GP is very practical and often offers alternative so that we do waste budget.

[Lesannett1]

Thank you but actually the query was for Wombat140. The problem is for people based in the UK who Skype with professionals in the USA. Getting the doctors in the UK to work those in the USA is a problem usually. In the UK we struggle to get diagnosis and treatment. Hopefully this will start to change soon.

[Wombat140]

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?

[4Nikki]

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?

 

It's my understanding that anyone can order a test. Possibly the problem is that insurance will not generally pay for the tests if it's not ordered by the doctor treating you. Thus perhaps "Amy", as a policy, won't order tests? Prescribing medication is a different issue. If your GP is not willing to work with your specialist no matter where they live, you might want to rethink your GP selection. My wife is an OR nurse and generally chooses the best surgeon as her GP but over our 30 years together she has changed her selection process to my point of view as to what works best for us being the best counselor.

[Wombat140]

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!