would you try steroid if child is not "severe"?

[eljomom]

That pretty much sums up my question Many tics, some ocd, but functioning and pretty happy most of the time (other than getting dressed, and a few of the ocd things). she's not 100% by any means, so will steroid get her there? or is it just temporary, and mainly used to get a severe exacerbation under control?

Thanks!

P.S. I would ditto this with the same question regarding IVIG!

[Johnsmom]

We did a steroid burst per dr k's advice. Just to see if it was an autoimmune issue. Our son was not in exacerbation at the time therefore I did not believe it would work. Holy Cow were we ever surprised. His whole appearance changed. No more stiffness or goofy facial expressions. All around improved speech with excellent word retrieval and the ability to string coherent sentences together. Unbelievable improvent in social awareness. He even got up on stage and recited 3 lines in front of 200 people! If only it lasted though.

I saw the same thing after hd ivig only to have it disappear after two weeks. We are seeing another dr now and have started at a lower dose working up to 1.5 per month.

Again, I didn't think the burst would do anything as he was in a good place. Boy was I wrong!

Give it a whirl and see what happens.

Good Luck.

[Kayanne]

That pretty much sums up my question Many tics, some ocd, but functioning and pretty happy most of the time (other than getting dressed, and a few of the ocd things). she's not 100% by any means, so will steroid get her there? or is it just temporary, and mainly used to get a severe exacerbation under control?

Thanks!

P.S. I would ditto this with the same question regarding IVIG!

I think of steroids as a first line treatment. If your daughter still has symptoms of PANDAS, then steroids are anti-inflammatory and immuno-suppressant. I don't consider the 5 day trial to be a treatment. I think a month-long taper is more therapeutic.

 

However, I think that if the autoimmunity has been entrenched for too long, then a steroid may not be enough to put PANDAS in remission. However, your daughter may still get some improvement from it.

 

Honestly, I think the results of steroids are hit or miss. I think if it is very early in the PANDAS exacerbation, and there are no other complicating issues (other infections or TS) then there is a good chance that a pred taper can bring on remission. If it's not early, you may see some relief that sticks or your child may backslide when stopping the prednisone...that is when IMHO, the second line treatments should be considered (IVIG or PEX).

 

I'm not sure where IV steroids fall...first line or second line treaments?

 

Of course, this is all just my opinions based on my daughter's PANDAS treatment.

 

The decision to try steroids is really a personal one that a family makes with the guidance of a doctor. Like every treatment, the risks vs. benefits need to be considered. I'm sorry I can't really give more than that. I think for me, personally, I judge the severity of my daughter's PANDAS symptoms based on her school performance and emotional reactions. I don't want to see her school work suffer, and I don't want to see her unhappy.

Edited April 19, 2011 by Kayanne

[airial95]

That pretty much sums up my question Many tics, some ocd, but functioning and pretty happy most of the time (other than getting dressed, and a few of the ocd things). she's not 100% by any means, so will steroid get her there? or is it just temporary, and mainly used to get a severe exacerbation under control?

Thanks!

P.S. I would ditto this with the same question regarding IVIG!

 

I'll offer a bit of a different perspective. We're probably in a similar position as you are, some ocd (getting dressed and mealtimes seem to be our hassle), our tics are very mild (all minor facial tics) and only come out when there's anxiety, and overall, while we're not 100%, he's happy and doing well in school.

 

We're still on abx (a 90 day course from a strep infection in mid February) we have been seriously considering both steroids and IVIG - but have decided not to take the step at this time. He's making GREAT strides on the OCD (which is our main lingering issue) - to the point where last night something happened at dinner that would normally be a major issue, and instead, I asked him to talk me through what he wanted - he did, we fixed the problem together (using a compromise solution - not giving in to the OCD entirely), and he ate his dinner all smiles - and was proud of himself for conquering the issue.

 

We've decided to give the therapy route a while to see if it continues to work. This last infection - the exacerbation wasn't as bad we think, in part, because we were actively using the therapy techniques he was learning to help.

 

I too question if I should just pull the trigger on the IVIG or other options if that has the opportunity to get him to 100% - but with him being so young and small (3 1/2 and only 32 pounds), the more heavy duty treatments still scare me if things aren't that critical.

 

We may still change our minds - it's an ongoing conversation in our home - but like Kayanne said, it's a family's personal decision to make...good luck!!