steroid burst over...now what to expect?

[otksmama]

Today is Day 5 of 5 for my son's steroid burst. Dr. K prescribed about 25mg once a day. He said do not observe during the five days, but after that for two weeks. Is this because changes are not likely to occur during the therapy? I hope not...as symptoms are still in full force! Can anyone explain why the delayed response? I would think if treating inflammation, a reduction in symptoms would be almost immediate and ongoing with each dose administered.

Also, is it very obvious when symptoms subside? Or is it very gradual and slow? Or is it up and down, like coming and going? I'm a bit concerned I'll miss something, since he'll be starting school in two days. I've asked the teacher to email daily with her observations.

And another question about exacerbations: this has lasted 5 months. Is that typical? Sometimes I am shocked to think this nightmare has lasted that long. As much as each day is truly awful, it's gone fast and I'm sad he/we had such an awful summer. Can we get a do-over?

[pr40]

remember, it is not inflammation that hurts our kids but a reaction to it. it takes time for antibodies to stop causing damage.

for our ds, steroid taper (not burst) brought first noticeable relief. it was not straight but we did see it for few days, then it was gone, then it came back again for a few weeks until next infection.

for us exacerbations last long time, we see them ebb for a few days or hours depending on the period, then they come again. on abx, exacerbations have been losing intensity. That's what we call improvement, when they do not sink as low.

are you doing other things, diet? supplements?, in my experience, you don't get over PANDAS without an approach that, well, acknowledges that these organisms just work very differently and need a lot of support.

[otksmama]

I'm not sure what you mean, pr40, when you say it's not the inflammation that's harmful but it's the reaction to it?

[T_Mom]

First-- I do wish we could have a "do over" as you say of the months/years lost in illness...if only!

 

I remember asking Dr K ...but HOW will I know if there is an effect from the steroids??? His measured response was "it will be a sudden and obvious change".He made it very clear that IF there was a change from the steroids we would know it very clearly...it would be obvious, and it was! Ours have varied in time post last day of steroids -- but one time the sudden and obvious change was a few weeks later! You will know If they help--

[pr40]

auto-immune reaction is a reaction not to inflammation as such but the one that follows when anti-bodies turn against the organism itself. as i understand it, this is the mechanism behind PANDAS and all other autoimmune diseases or conditions.

[cobbiemommy]

Look for behaviors or lack of them that you have not seen in a long time. I remember our son had a days where he was so relaxed and his posture was just so comfortable and fluid. He also did not talk as loud. Good luck.

[bigmighty]

DS had a 3 week steroid taper starting at 35 mg prednisone. Two full months after the end of the taper, his OCD subsided instantaneously.