Is there any point investigating PANS w/o specialist doctor?

[Wombat140]

I could do with some advice, please, from your experience. I'm on the point of trying to get some blood tests done, out of pocket, but I'm wondering, is there any point in me trying to get tests for infections/immune conditions - if anything showed up, is there actually anything I could do about it?

 

My family doctor wouldn't know what antibiotics to use, and I very much doubt if she'd be willing to prescribe something just because I said I thought it was the right thing to use based on something I'd heard at third hand on the Internet. And she'd be right; I don't have a clue what I'm doing, and I'm too tired and scrambled to piece together all these bits of hearsay into any coherent picture. And I don't know who she could refer me to that would be more knowledgeable; as far as I know, since Dr Goyal closed his clinic there is no PANS or PANDAS specialist in the UK at all - if there is, I'd be grateful to know.

 

(Would there be any other kind of medical specialist who'd know any more about what to prescribe for a chronic infection/auto-immune condition than an ordinary GP would? Rheumatologist or immunologist or something?)

 

Given that, is there any point to me trying to get tests, or is it just a waste of money?

 

Hope this is intelligible, I think it is but I'm very tired and very tired of all this. :-(

Edited January 31, 2016 by Wombat140

[MomWithOCDSon]

So sorry your resources appear to be so thin . . .

 

Here in the states, we also have some infectious disease (ID) doctors to whom some folks have been referred. They're not always helpful . . . frequently "pooh-pooh" PANDAS and PANS, but I do know some folks who've found some assistance through that tract.

 

Would your GP perhaps be willing to consult via Skype or something a PANDAS-savvy doc here in the states? I don't know that our pediatrician ever availed herself of it, but I gave her the full contact information for a couple of PANDAS-knowledgeable docs thinking that perhaps some consultation between professional colleagues, without my participation, would somehow feel more legitimate to her than would my passing on web site materials, etc.

 

Also, I was able to get our first round of abx by literally taking a copy of "Saving Sammy" to our pediatrician and begging for her help. When she said that she was willing to help given as she'd taken an oath to "do no harm" and she didn't believe a course of abx would be harmful to my DS, she followed that with, "But I have no idea where to begin. I don't have a protocol for this!" So I opened up the copy of "Saving Sammy" and showed her Sammy's medication, and she agreed to try that. Now that I think it through, I'm betting she DID follow up and contact one of the other doctors for whom I gave her the information because she's generally a fairly cautious caregiver. (At that point, I didn't know about as many professionals treating kids with the condition as I do now, so I'd given her Sammy's doctor's info.)

 

No question, this is an expensive, time-consuming and frequently frustrating path. I'm wishing you the best and some substantial relief soon!

[Wombat140]

That sounds a good idea. Just checked NHS website and there definitely are infectious-disease specialists here; I hadn't thought of those, that makes sense. Unfortunately, it's the same problem as with any other specialist; you can usually only get to them by being referred by your GP, and I doubt if she would or could do that with no conventionally recognised evidence that I might have an infection! But then, if I did get the test results, and could show her something funny-looking on them, then she might have a case for referring me. So then there is a point to doing some tests.

 

Unfortunately, I have already done a course of Augmentin without any success.

 

Not sure how that would work with consulting a US doctor. I mean, surely the US doctor wouldn't do that without being paid? But then, if you don't know for sure whether your doctor did consult Sammy's doctor, then presumably you didn't send Sammy's doctor any money? (Not sure whether we're running into one of those things where the system is different here.)

 

Thanks - it was between e-mailing a lab today or not bothering after all, and you've convinced me that there is some point in doing it.

[MomWithOCDSon]

No, I never sent any doctor any money. Actually, my point was that I'm told that doctors consult one another frequently as part of their regular, professional course of business. So I thought that maybe if I gave our doctor some other professional resources that she could consult that she would consider to be "on par" with her own credentials, she might do so in order to become better informed about the condition, etc. I didn't really have any expectation that she and another doctor would consult specifically about my kid . . . just consult with someone with more experience regarding a given medical condition that was lesser known to her.

[Wombat140]

Hm! that's encouraging then. Thanks again.

[4Nikki]

Test results reveal facts. Some are actionable some are not. Their value is they help us make decisions. Of course, you have to weigh how much is that value.

 

Getting a Cunningham panel gave us confirmation of her clinical PANDAS diagnosis with three of the five measurements being way out of range even without being in a flare. Where as expensive MRI, LP and the like showed negative results. The only blood tests aside from the Cunningham panel that showed results were, when she was sick or if her immune system was attacking her organs. With my experience regarding DD tests, there is no way I could decide not to do the MRI or LP when her doctor was admit there will be a result. I'll still being paying for many of those tests for the next 6 months.

 

Without the tests, we could have not been prescribed a steroid blast treatment aimed at resetting her immune system and it worked great but only lasted for about 8 months. (this was done successfully or unsuccessfully twice depending how you look at it) Now her doc is looking toward IVIG. It's all not easy.