Steroids if you don't know? + no sawtooth=not PANDAS?

[Wombat140]

Hello everyone, a couple of basic questions. We've finally involved our doctor and since she knows nothing at all about PANDAS, we're having to go over everything from scratch which is good for us as it makes me realise that I didn't know as much about the basic principles as I thought I did. There's nothing like trying to explain something to somebody else for making you pay closer attention yourself!

 

1) My OCD symptoms don't follow a "saw-tooth" pattern, they're all the time - they'll go up or down slighly over a period of months, but they've almost never disappeared since they started. Does that mean it's not PANDAS?

And does the saw-tooth pattern still apply with things such as Lyme disease that are a continuing chronic infection rather than repeated separate infections, or would you expect the symptoms to be continuous (like mine) in that case?

(If so, can that be taken as a small clue to what infections it might be?)

 

2) I've read that a steroid burst is a bad idea if it might be Lyme disease. Since we currently have no idea what it is at all (haven't been able to access any antibody testing yet), does that mean that we shouldn't try a steroid burst unless and until we do find out what the infection is, if any?

Edited February 24, 2016 by Wombat140

[MomWithOCDSon]

Wombat --

 

I may be misunderstanding your post, but I don't believe we generally reference OCD symptoms as "saw-toothed" in and of themselves . . . rather, in our experience, it was the healing once we got treatment (abx) that tended to follow something of a "saw-toothed" pattern. In other words, my DS would have a series of good days during which his OCD and other PANDAS behaviors would improve, , and then he would have a bad day or a couple of bad days during which a behavior we thought he'd permanently dismissed snuck back in. Or he'd hit a plateau and hang there for a day or two before more tangible improvements followed a few days later.

 

When it comes to OCD specifically, the term I've heard more typically from mental health professionals and even other families is "wax and wane," meaning like the moon, folks go through a period during which it tends to be disruptive and a period during which the OCD appears to subside. Personally, I think that "waxing and waning" is in direct response to an immunological event of some sort, but only other PANDAS folks are willing to sign on to that, generally speaking.

 

I can't comment on Lyme or steroids since we haven't dealt with that ourselves.

[PowPow]

OCD was completely unrelenting from onset until proper treatmemt in my daughter's case.

I will be honest, i think that worrying about Lyme disease may prevent many many people from seeking the tx they need. I think it is a crapshoot, really.Even if you do the " correct" test and it is negative, you will still have people telling you it could be lyme or a "co-infection".

You have tried abx and they did not really help. Trying something different would be my bext step.

[Wombat140]

Ah, I see. So no particular indication of whether it's streptococcus or not from that, then. (That's useful to know, I'm giving my doctor a copy of "Your Child has Changed" and I wanted to know what to scribble on that bit.)

 

Realistically I don't think I have a chance of getting prescribed high-dose steroids just on the off-chance, before there's any evidence that I do have anything wrong with my immune system - American doctors just seem to prescribe much more recklessly than British ones. But I'll ask.

[dcmom]

Wombat-

 

So much still to learn. I agree with pow pow, my kids ocd does not go away until treated, typically with immune mediating treatment- not antibiotics.

 

The question is whether your ocd would respond? IMHO the risk is low, vs the possible benefit. OCD is very painful to treat via therapy, so much nicer to treat if it responds to medication.

 

I am thinking you are not in the US? Any chance of getting the Cunningham test? While that may not necessarily rule immune involvement out, it would be a great clue if your numbers were elevated. You may be able to take that to your doc and negotiate treatment.

 

My girls have typically done well with steroids, however sometimes they have not been enough. My thought, for you, if you were my child- would be a throw everything at it at once and hope for some movement-

 

meaning some type of immunotherapy (high dose steroids- if not maybe a five day steroid burst every month for three months), at the same time considering an antidepressant (prozac has helped my girls with mood stability so much), and once the first two are on board, adding in intense (daily) ERP therapy with an experience practitioner.

 

We have found this combo approach the best.

 

Best wishes to you.

[Wombat140]

Thank you very much! I've written the Dr a letter and I did mention steroids. (Tried antidepressants just recently and it didn't go well, not sure whether it was psychological or physical but things got worse.) I'll let you know developments.