PANDAS doctors in the UK?

[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

[Ozimum]

Hi Wombat140,

 

On Beth Maloney's 'Saving Sammy' website there is a contact list for providers: http://www.savingsammy.net/providers.php

On that list there are three in the UK, with two located in London and a third in Hampshire - not near you unfortunately. However, it may be worth ringing them and seeing if they can recommend someone closer, or maybe one or more of them would be prepared to arrange to do a telephone consultation with you. (You may have to pay an upfront fee - I'm not sure how UK health insurance works.)

 

Beyond that, I suggest you try to find a good naturopath or integrative doctor near you - they would be more likely to understand infection based illness than a GP. A DAN! (Defeat Autism Now!) doctor would also be worth seeking out - you may need to do some Googling to locate one in the UK, but I believe there are some. (You don't need to be on the spectrum to consult a DAN!)

 

Hopefully someone in the UK will respond.

 

Good luck! Let us know how you get on.

 

Edit for typos (- all thumbs!) Also - I've sent you a PM with a list of UK DAN drs I found through a Google Search

Edited July 24, 2012 by Ozimum

[Wombat140]

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!

[StellasMum]

Hi Wombat, sorry to crash your thread but wondered if you could PM me those DAN drs in the UK too if you don't mind. My dd has shown something up in her throat swab so I am gearing up for a possible battle for PANDAS treatment. I hope you have some luck. If I find anything up North on my googling travels, I will let you know.xxx

[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.

[StellasMum]

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.

 

Thanks, that's great- I will add it to my growing file/pile in the kitchen! Reassuring too that Peter Hill said he thinks PANDAS should be treated like TS or OCD as lots of the info on it is quite unclear isn't it? Really hope you have some luck. xxx

[Ozimum]

"... 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!"

 

Your comment made me look him up on the internet...he's a psychiatrist I think...I'm not sure I would be confident that he's thinking along the lines of infection based illness in these conditions. It's interesting that Beth Maloney has him listed on her website, so hopefully he's on board... I look forward to hearing how you get on with the Dr in Birmingham too. Best of luck!

[Wombat140]

I'm not quite sure what you think's reassuring about it, Dawn. It isn't for me, at least - my symptoms have already proved impervious to the treatments for normal OCD and TS, so somebody who doesn't think PANDAS should have any special treatment (e.g. antibiotics) wouldn't be a lot of help! Basically he seems to be of the view that PANDAS is just one possible cause of OCD/TS and "in most cases" it doesn't make any practical difference whether it's PANDAS or not, and he advised me "not to get too hung up on it". I'm sure he means well, but as things are now, the risk of getting mixed up with a dud theory is the least of my worries.

[Wombat140]

Wrote and asked Prof. Hill whether he was recommending the Birmingham psychiatrist because he knew about PANDAS or just because he was a good psychiatrist, since it wasn't clear from the letter. Received rather peculiar answer:

"You don't diagnose PANDAS. It's a process, not a condition. I think you should write to him directly. I don't think I can help any more."

Doesn't he know why he recommended him? :-) In any case, I don't think any more can be expected from that quarter.

[Wombat140]

I may have spoken too soon there. I got a reply from another doctor yesterday - Dr. Isobel Heyman of the Maudsley - saying that she'd passed my letter on to the same Birmingham doctor, Dr. Hugh Rickard. So that suggests that he really does have something to do with PANDAS. Maybe Professor Hill does know his onions after all, though he isn't all that good at showing it! Fingers crossed...

[Ozimum]

From my quick internet search, Dr R appears to treat Tourette's. Whether he is open to considering PANDAS is another question. I guess you'll only know if you speak with him about it. Here's hoping he's PANDAS friendly and you get the answers you're seeking!

 

Edit to add...I just found a webpage on a 2010 Tourette's conference where Dr R spoke...PANDAS was definately on the table at that conference, so that's looking hopeful. Check it out at:

http://www.tourettes-action.org.uk/display/ShowJournal?moduleId=3813883&registeredAuthorId=326208&currentPage=3

Edited August 3, 2012 by Ozimum

[Wombat140]

Thanks Ozimum, that's encouraging! I'll see if he replies to the message Dr. Heyman sent him, if he doesn't in a few days I'll write to him again myself.

[natashasweeting]

Hi Wombat140, I know it's been a long time since your post but I'm hoping you might see this and respond. Did you find any doctors in the North of England who recognise PANDAS? Also did you have any success with treatments? Thanks in advance. 

[Wombat140]

Nope.  Or rather, we did find one, Daniel Goyal, but he's closed his clinic since then.  I didn't get anywhere o his treatmnts, but we may have been barking up the wrong tree - we hadn't managed to get testing done at the tome owing t needle phobia, we've managed to have it done rececnet and it seems as is if it may be :Lyme dises rather than, or as well as, PANDAS.

I'm now "seeing" Amy Smith long-distance for the Lyme diseas  No progress yet but we've not got on to the main antibacterials yet, only some prelimani things.

You might look at this thread 

I put a lot of possibles I found alog the way in there, one of those might be some good to you, depending what yolur situation is.  If you're able to traavel a reasonable way, your options will be a lot wider than mine wef!

Welcome to the forum.

[natashasweeting]

Thank you so much for your response Wombat140. I'm looking for help and support on behalf of my best friend. Her 4 year old daughter seems to have completely changed almost overnight and she is at a loss as to what the problem is or what to do. We came across PANDAS and the symptoms for children seem to describe her daughter completely. We read up on it and decided she needs a GP appointment to start the ball rolling for a diagnosis and treatment but it became clear when reading up on PANDAS that in the UK, specifically in the North we are going to face a battle to get anywhere. We haven't even had a GP appointment yet but wanted to arm ourselves with as much information and guidance as we could beforehand so thank you so much for your help. Every GP appointment my friend has had up until now just puts all of the symptoms down to anxiety about starting school. It would be nice to think they are right but knowing this little girl well, I really do think there's more to it and she had an infection about 6 months ago and we started to notice changes in her about 2-3 months ago. 

Thank you for your time and advice, it's appreciated.