steroid burst

[patric]

Hi Everyone,

I am wondering if anyone can advise me on the steroid burst and its side effects and what to expect. We are planning on doing the IVIG next month and the doctor recommended steroid burst to confirm diagnosis of PANDAS and to alleviate symptoms. I am very new to this, as my son was only diagnosed 10 days ago so any info. would be appreciated.

 

Also, Tracie, thank you so much for your post. It was VERY helpful! I would like to call you this week if that is okay.

Sharon

[MomWithOCDSon]

Am I correct in assuming your steroid burst prescription is for a five-day period?

 

Our PANDAS DS14 did a five-day steroid burst just a couple of months ago. From reading here, I've seen that some families see an improvement in the PANDAS behaviors (OCD, tics, separation anxiety, etc.) only AFTER the five-day prescription has been consumed . . . and the improvements tend to last anywhere from another 5 to 10 days afterward.

 

For us, meanwhile, our DS seemed to show almost immediate improvement -- within 24 hours after his first dose -- and that improvement continued through the burst and then for another week or so afterward. Then some of the behaviors slowly began to creep back in again after that. Essentially, he must've been suffering from such major inflammation that the steroids made a big impact that much faster as they put a dent in that inflammation.

 

You might also see sort of a "puffy cheeked" appearance during the burst, but that will fade very quickly once you're no longer administering the steroids. And, finally, if your child has any other inflammatory or immune-modulation symptoms such as eczema, those will likely fade significantly during the burst and immediately afterward, as well. Our DS has eczema that tends to flair especially during a PANDAS exacerbation, but the prednisone cleared it up beautifully.

 

Good luck to you!

[patric]

Am I correct in assuming your steroid burst prescription is for a five-day period?

 

Our PANDAS DS14 did a five-day steroid burst just a couple of months ago. From reading here, I've seen that some families see an improvement in the PANDAS behaviors (OCD, tics, separation anxiety, etc.) only AFTER the five-day prescription has been consumed . . . and the improvements tend to last anywhere from another 5 to 10 days afterward.

 

For us, meanwhile, our DS seemed to show almost immediate improvement -- within 24 hours after his first dose -- and that improvement continued through the burst and then for another week or so afterward. Then some of the behaviors slowly began to creep back in again after that. Essentially, he must've been suffering from such major inflammation that the steroids made a big impact that much faster as they put a dent in that inflammation.

 

You might also see sort of a "puffy cheeked" appearance during the burst, but that will fade very quickly once you're no longer administering the steroids. And, finally, if your child has any other inflammatory or immune-modulation symptoms such as eczema, those will likely fade significantly during the burst and immediately afterward, as well. Our DS has eczema that tends to flair especially during a PANDAS exacerbation, but the prednisone cleared it up beautifully.

 

Good luck to you!

 

Thank you! This is very helpful! Can i ask if you had the IVIG done? And if so, did you get good results? We are scheduling it for next month in Chicago. And yes, it will be a 5 day period for the steroids. I was encouraged by your post!

[MomWithOCDSon]

 

Thank you! This is very helpful! Can i ask if you had the IVIG done? And if so, did you get good results? We are scheduling it for next month in Chicago. And yes, it will be a 5 day period for the steroids. I was encouraged by your post!

 

No, we have not moved forward with IVIG as of now. Our DS responds well to antibiotics, and because he has no established immune deficiencies (rather, he is hyper-immune), we feel the jury is still out on the efficacy of IVIG in our case. There are a lot of other IVIG stories here to pour through, so you might peek around and see what others have to say on the topic. My overall impression is that it helps many if not most, but the impacts aren't always as long-lasting as one would like.

 

As to your other question, yes, generally I would say sending your child to school during the steroid burst is fine. Our DS attended with no unusual/extra issues during his.

[butterflymom]

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Edited October 9, 2015 by tampicc

[thenmama]

xx

Edited March 26, 2013 by thenmama

[Doug]

Hi Everyone,

I am wondering if anyone can advise me on the steroid burst and its side effects and what to expect. We are planning on doing the IVIG next month and the doctor recommended steroid burst to confirm diagnosis of PANDAS and to alleviate symptoms. I am very new to this, as my son was only diagnosed 10 days ago so any info. would be appreciated.

 

Also, Tracie, thank you so much for your post. It was VERY helpful! I would like to call you this week if that is okay.

Sharon

Oh yes call anytime:)

The steroid burst just helps to settle things down

It made my dd very hypper that was about it

now after ivig he will give you a rx for a steroid

to help the stuff that comes with the day 2..

Tracie