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Wombat140

Anyone know current status of Amy Smith from California?

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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.

Edited by Wombat140

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I don't see her, but I tried to make an appointment with another doctor who I think shares an office or works with her, and I was actually directed to her instead. I also left a voicemail and didn't hear back. My guess is that they are super busy and missing or taking a long time to return phone calls. I want to believe I wouldn't have been directed to her if she wasn't taking new patients or wasn't in the office, but I don't know for sure.

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Hi - We see her. I didn't realize she had her own website with a contact form. The main office site is: http://www.pacificfrontiermedical.com/

 

When you call the office, leave a message at x.0 for Mike, her assistant. I don't know if she's still doing long-distance phone consults.

 

Yes, she was on vacation during the above-mentioned dates, so I would imagine she's even more backed up now. Especially since there are so few knowledgeable practitioners here, and Stanford Hospital is even more backed up.

 

Good luck!

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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.

Edited by Wombat140

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Not sure how long her wait-list is. What about a Functional Medicine MD in the UK (do they have those over there?), that's helped the most w/my Lyme and other inflammatory issues.

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Please try again with Amy Joy Smith for the phone appt. at the number above, leaving a message for her assistant Mike you would like a phone appt. ASAP

Do you have a Dr. there where you are at that will take her recommendations if she suggests a prescription?

Please hang in there, glad you reached out.

Sending you good thoughts----

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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!

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Yes, same number. x.0 is Mike, her assistant. (usa)+(650) 474-2130 x.0

 

Not sure re. Environmental Med. and I forgot you have a single-payer med system there, so maybe more difficult to get non-standard providers. Glad you have a sympathetic MD though.

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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.

Edited by Wombat140

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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.

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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?

Edited by Wombat140

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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?

Edited by Wombat140

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Hi Wombat,

 

I've heard mixed reviews on Dr. Harris, but generally only very positive comments about Amy Smith. She has been knowledgeable, positive, and cost-conscious -- that last one may come from having a PANS kid of her own, and seeing their life savings eaten up by medical treatments. and they work hard to do IVIG as cheaply as possible without the insane mark-up you can get in a hospital. In fact they now set up many IVIGs as in-home procedures, to minimize the cost and max the convenience.

 

I certainly can't imagine her yelling at a patient! I've not seen anyone else but her, so I can't comment on that, but I am very picky about my kids' health care professionals, and we're keeping her as part of DS16s team. I have been able to say that he can't tolerate the taste of throat spray X, or doing Y, and she finds an alternative, which I appreciate. And when his CAMKII activation came back very high, she was unequivocal that he'll be a great candidate for IVIG, same as I'd later heard from Dr. T.

 

I don't know why you're not getting any response to your phonecall. Mike, the nurse / admin / jack-of-all-trades may not always be available to pick up the phone, but I do get timely responses. I just don't remember if those are to phonecalls or emails. Have you tried contacting Amy through her website? I have to contact them this week as well, so I'll try to send an update with what I find.

 

 

 

 

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