Steroid response

[Debbie1]

My son just finished a two week steroid burst (1 week at full dose, 1 week taper). We saw definite improvement - better concentration, very little if any repeating of phrases, decrease in neck tic, some decrease in symmetrical touching. He is better than he was, but not all better...maybe 50%. My questions are...

 

1) Is 50% improvement enough to consider the steroid burst a success and be indicative that IVIG would help? Or does he need to get more of an 80-90% improvement to warrant IVIG?

 

2) His improvement declined on the last day of the burst when we were down to only 10mg. Maybe it was just a bad day, I don't know, but has anyone else experienced that quick of a decline?

 

Thanks.

[britmom]

Our DS9 was on prednisone for 5 days recently - 30 mg in the morning and 30 mg at night. No tapering. He was really bad when he was on them - more tics, very aggressive (verbally, not physically), very emotional. I could hardly bring myself to give them to him by the 4th day but we somehow finished the course. It was so worth it! The day after he stopped taking them, he was a different child - really calm and focused. That was the best day. He is slowly returning to how he was before although his tics are still a little better than they were. His focus and emotional lability have pretty much returned to how they were before though. It's been 3 weeks since he finished the prednisone. My impression from this forum is that kids do vary in the level of their response to steroids. I'd say overall we had a full week of really noticeably improved behaviors and then gradual deterioration.

 

We're going to repeat the use of steroids again when we feel that we need them, and if we see the same kind of response we will start to consider IVIG, which our ped has recommended.

[momaine]

A month ago my dd did a 6 day tapering course (24mg then 4mg less per day) of Methylprednisone (sp) and it took another week to really begin see the benefits. The benfits lasted about ten days. It certainly did not fully eradicate her sypmtoms but they improved a lot. (Very obviously) For a good 5 of those days all her symptoms were in the 0-3 range out of a total of 0-9 on a scale. Typically she has a handful of behaviors in the 4-6 range and one in the 7-9 range here and there.

 

She is on day 3 now of a new course of Prednisone. (40mg for 5 days no taper) She already seems to be doing a little better but I'm hoping for a greater response as time goes on. Dr. T said we can do this next month as well, as long as it seems to be helpful.

 

Dr. T did mention that it makes her a good candidate for IVIG if it is needed some day. She seems to be slowly improving on the antibiotics however and is not at a crisis level at all anymore.

 

Angela

[zazuk2010]

One of our twins responded very well to the steroid burst the other did not show much of a difference. The one that did NOT respond had the best result from the IVIG. The other has done well, but interestingly the symptoms he had prior to IVIG did go away (exsorsist tantrums) but other syptoms showed up that were not there before (extream seperation anxiety) and are provng hard to get rid of.

 

We are now 4 months post IVIG and son #1 still holding and with son #2 we are trying to figure out what to do next. Considering an antibiotic change and/or another IVIG.

 

Kari

[Debbie1]

Thank you for the replies.

 

Kari - It is reassuring to hear that even a child who had no response to the steroids responded positively to IVIG. Thanks for posting.

[thereishope]

My son did a 5 day burst. It was early on after he contracted strep. After 3 doses were in his system, his PANDAS symptoms began to plateau. Then we started to see improvement. Overall, for my son, it aided in recovery. He did not get close to 100% himself while on the steroid, but I would also say 100% it was a success for my son.

[Kayanne]

I really think it all depends on your purpose for using the steroid.

 

If you are trying to use it as a treatment then I would say 50% improvement is not something you should accept--try it for a longer course or wait a month and try again. Dr. L told us that if our daughter was not 100% or close to it after the her month-long course, then we would need to be considering IVIG or plasmapheresis.

 

However, if you were trying it to see if there was an improvement that would then indicate that this is most likely autoimmune, and therefore your son would be a good canidate for IVIG, then I would say 50% improvement is a good number, but move on to the treatment that will get him to 100%.

 

~Karen

[Debbie1]

Our intent with the steroid burst was primarily diagnostic to determine whether he would be a good candidate for IVIG. If he had longer term improvement after the burst, that would be a bonus. Our experience though, after having used steroids for our other PANDAS child, was that the results were temporary and symptoms eventually returned.