Absolute basics about PANDAS etc. please?

[Wombat140]

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

[MomWithOCDSon]

Wombat --

 

1. The U.K. There are a few posters from the UK here, so I'm sure they'll chime in before too long, maybe after our U.S. holiday weekend (Memorial Day).

 

2. Sorting it All Out. Have you taken a look at the pinned "Helpful Threads for PANDAS" at the top of this forum? I agree, there's an awful lot of both information and opinion here, but there are links to clinical papers, web sites, etc. there that will be helpful to you in getting started. Just take it one step at a time and try not to feel too overwhelmed by it all.

 

3. Testing. I think most folks here would suggest that you have a basic immune panel done for IgG, IgA, etc. to see how your immune system is or is not functioning. I'm not an expert on myco p. by any means, but I believe that one of the items on the basic immune panel can identify the likelihood that a PANDAS trigger for you is or is not myco p. (searching for links with that in the search title will likely give you lots more info). In terms of strep, especially if you have a history or a family history of strep throat, rheumatic fever, scarlet fever or Syndeham's Chorea, but even if you don't (my son was entirely asymptomatic but still tested high in strep antibodies), you can ask for the ASO and Anti Dnase B blood tests which identify levels of strep antibodies in the blood (ASO is supposed to demonstrate a more immediate time frame/infection, and the anti dnase B is supposed to point to an exposure of infection some 4 to 6 weeks prior). Many people would also suggest you test for lyme and related co-infections, again, particularly if you have been in areas where lyme is known to be an issue. Any doctor should be able to order the immune panel, ASO and anti dnase B tests, but lyme testing, as I understand it, typically requires a more specialized practitioner (an LLMD, which I'm not sure if they have those in the UK), although you can order tests through the mail or on-line through such companies as Igenex. Again, not my area at all, but you could check the lyme forum here if you have any inkling this could be playing a role.

 

4. Treatment. Million dollar question. I take it from your post that you are past the "pediatric" chronological age, and there is some inkling that treating adults, or even older kids that have gone undiagnosed or treated for an extended period, may require either more aggressive treatment or longer treatment or both. For example, my DS, now 15, was orignally diagnosed with OCD at the age of 6; we didn't get a PANDAS diagnosis or treatment until he was 12. He was on antibiotics for 2 full years and though we ended those, he's still under agressive supplementation, low-dose psych drugs (zoloft and lamictal) and some therapy for the compulsions and obsessive thinking. Overall, he's doing very well, but I suspect this may now be a part of who he is, rather than something we can manage to 100% eradicate. Never say never, though!

 

Anyway, the conventional treatments for PANDAS as of now are: antibiotics (usually 30 days at a minimum, and sometimes much longer); IVIG (many, many threads on that here); and/or short-term steroids (to reduce inflammation in the brain and help seal the blood brain barrier). Some of us have used only one of the three, some of us have used two, and some of us have used all 3 and continue to do so. Some have gone for a single IVIG, and others return regularly for additional IVIG treatments due to having found immune deficiencies in the process of the PANDAS testing.

 

5. Help Now. I don't know if it will be easier or harder to find help in the UK, but hopefully someone here will chime in with information as to a doctor not too distant from you who might help. In the meantime, if you have a doctor you trust who's willing to listen with an open mind, I would print out some of the documentation from the pinned threads here and take it to him/her; ask for the blood tests and a trial of antibiotics to see if they have any positive impact. While you're working toward finding the right caregiver, you can try some of the over-the-counter anti-inflammatory things many of us use with our kids: ibuprofen, omega's (I've read that fish oil can sometimes exacerbate tics, so maybe you would want to try evening primrose oil -- or EPO -- instead), curcumin, etc.

 

I know it seems like a huge boulder that requires pushing up a hill at this point, there's so much to consider. But if you've been dealing with OCD and tics for some time now, then you know what it is to be resilient and determined. You'll get there. For now, as daunting as it may seem given the volume, I would just start reading like a mad person!

[cobbiemommy]

This is where different experience leads to different ways to look at PANDAs. Since my son has no antibodies for strep, there is no response on the ASO or anti-dnase tests.

 

1) Tests to request(from my pov): Streptozyme Titer. Measures for actual strep in the blood system. Also: Get tested for Streptococcal antibodies (immunological testing). Do you have any? If not, you are immunodeficient and need to get to a good immunologist ASAP. Allergy testing for foods and environmental allergens (dusts, pollens, animal dander, that sort of thing.) Also RAST allergy test for food allergies. These need to be completed by a well qualified allergist/immunologist, not a GP. Begin immunotherapy as recommended.

 

I would also recommend all of the testing that MOMwithOCDson suggested.

 

Good luck and know that lots of kiddos on this side of the pond are getting better with the right help and you will too!

 

Cobbie

[Wombat140]

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

Edited June 7, 2012 by Wombat140

[Ozimum]

Hi Wombat,

 

ARI used to have a practitioners list until recently. Perhaps you could try contacting them directly - perhaps see if they can put you onto a similar organisation in the UK. Someone in your local Autism community would surely have the lowdown on helpful integrative/biomedical/DAN! doctors - though it may take some ringing around. Just be aware that not everyone in the Autism community is on board with the Biomedical approach. (Personally, our DAN! is my No 1 hero because he helped my son.)

 

As for explaining to doctors...you could try taking copies of one or two documents with you - I suggest Dr Swedo's White Paper - See PANDAS Network - http://pandasnetwork.org/?track=nwsltrdec2010

 

Don't give up! And do let us know how you get on.

 

Edit: Just wanted to add that there are some UK contacts on the PANDAS Network website - See pull down menu for Resources, then Support Groups.

Edited June 7, 2012 by Ozimum

[Wombat140]

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.

The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. - pandasnetwork.org

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

[Kiera]

A few things to consider Wombat 1) you don't have to have ALL the symptoms of pandas, emotional lability etc. to have pandas! You can have pandas and just have the tics, or just the OCD or a combination of the symptoms. Some kids cycle through many symptoms and don't have them all at the same time. Also, as evidenced by the 12 kids in Leroy, NY last year, there is a theory of maybe a spectrum of pandas, or atypical pandas, just like autism. 2)Just because you never identified a preceding illness does not rule out an infection as a trigger, read "Saving Sammy" he never had any symptoms of strep throat but developed OCD each time, possibly due to an immune deficiency ?? and 3) Just because your symptoms were never zero, does not rule out pandas either as you were never TREATED for pandas! Even our pandas kids that are treated, many are left with a 5-10% residual pandas symptoms. Lastly, snce you said your symptoms came on overnight, I agree, that sounds more infection triggered than not. Plus you can't take the official line on defining pandas as absolute as the pandas experts have a much broader inclusion scope than the official diagnostic criteria. The official line is very narrow due to political reasons! First thing you should do is get a throat swab and culture and run a set of strep titers to see if strep can be identified as an issue for you. Good luck!

[Wombat140]

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...

[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.

Edited July 24, 2012 by Wombat140