Steroid Burst

[dcmom]

I guess everyone knows that Julia is having some issues post pex, thanks to a bout with the swine flu. She started having minor pandas issues on Sunday, a day after recovering from the flu, mostly: irritability, whiney, tears at the drop of a hat, short fuse, very pale, somewhat spacey, separation anxiety, loss of appetite. Everything seemed to be slowly spiraling down. We started a steroid burst yestarday. I am cautiously optimistic, because there has definitely been improvement. She did her first steroid burst in August- it worked well, although exposure to strep lost us a little of that progress.

 

So my question is, how many times per year can we do a steroid burst safely? Has anyone had this discussion with their doc? I mean, had we treated aggressively with steroids all along (we didn't), she probably would have had at least 4 so far in 2009.

[KeithandElizabeth]

Hi Eileen:

 

First, I am sorry that you are going through a rough time right now. We had a relapse last weekend and I found it devastating. My son is doing better now, so I wonder if you will also see the sawtooth healing post PEX.

 

I know steroids are used quite frequently with asthma. I don't know the answer to your question, but I wonder if you should call Dr. Trifiletti since you have seen him in the past. I know he has been answering the phone and if open to questions since he is just starting his practice.

 

Elizabeth

[P_Mom]

I am wondering the same thing myself. My son is experiencing an increase in symptoms right now (10 days into a higher dose Augmentin), enough that I am considering a burst. He had one burst maybe 2 years ago, but, another this past July.

 

DCMOM...how is your daughters immune work-up??

 

Anyone know...please post.

[Kayanne]

In August we saw a rheumatologist at Hershey Medical Center. He said that he felt that maybe two weeks at a time about once a month was safe..basically two weeks on/two weeks off. He was willing to let our pediatrician know that.

 

He said it was something that needed to be monitored because some kids have more side effects than others...kind of like a case by case basis. Also he said that teenagers see side effects from the pred much quicker than younger children.

 

Not that he was willing to learn about PANDAS or treat it...to his benefit he was honest with us about that. I felt like I needed to salvage something out of the appt, so I picked his brain on pred, and prophylaxis; and he was willing to discuss them in general terms.

 

I think rheumys are used to using pred, so they may be more aggressive with it.

 

I cannot remember who, but recently someone posted that Dr. L told them every six months is okay for treating this with pred, but I don't think the poster elaborated as to weather this was to treat a more "cronic" case of PANDAS or to treat a current exercerabation.

 

I hope Julia improves very soon!

 

~Karen

[Debbie1]

Hi Eileen -

 

I have to run, but quickly:

 

My ped said it was safe to do a steroid burst every 6 months (and that was for a high dose burst). I would assume it is probably dependent on the dose and duration of the steroid.

 

I hope she feels better soon.

 

Debbie