Steroids... what does this mean?!

[Tattoomom]

So, we've had a backslide recently while trying to lower her (dd4) Zithromax dose and all her PANDAS symptoms are back. Sooooo, we decided to do a 5 day steroid burst and within 2 hours of taking the Prednisone, she's HAPPY and LAUGHING and PLAYING and being a NORMAL 4 year old!!!

 

What does it mean? Why do steroids help her so fast? Where is she hiding and what does Prednisone do that brings her back?

 

I know steroids lower inflammation, but I'm just trying to understand what this means. How she can go from miserable to angelic in 2 hours of her first dose?

[PowPow]

Great news! If the improvement continues, than it sounds like her behaviors are from an inflammatory condition. We have never seen such a rapid response from steriods with PANS symotoms, but who knows? My kids usually get better in 10-14 days.

Have you tried Augmentin for her?

Edited June 26, 2013 by PowPow

[Mayzoo]

The inflammation from the antibodies attacking the basal ganglia is what causes most the symptoms. Steroids both drastically reduce inflammation, and they also suppress your own bodies immune system (immunosuppresant). This will reduce the amount of antibodies available to attack the basal ganglia. So, you have fewer antibodies causing the inflammation, AND a drastic reduction in inflammation already present. Both lead to a tremendous reduction in symptoms sometimes within hours, sometimes within days.

 

I am glad it was the within hours for you .

[Tattoomom]

Great news! If the improvement continues, than it sounds like her behaviors are from an inflammatory condition. We have never seen such a rapid response from steriods with PANS symotoms, but who knows? My kids usually get better in 10-14 days.

Have you tried Augmentin for her?

She was on Augmentin for a long while (6 months?) and been on Zithromax about a year

[LNN]

My son used to feel rapid relief from prednisone within 2-3 days. It was like a sign of relief flooded over him. While prednisone is an immuno-suppressant, I've always been told that it take extended use before it will compromise your immune response. 10 days is a normal course for poison ivy and my pedi has always said there's no suppression for many weeks. So I'd guess that what you're seeing is relief from inflammation. It makes me wonder if there isn't a chronic infection of some kind still lurking. I'm glad it's bringing such great results! Not sure why you were trying to lower the zith dose but perhaps this suggests she needs to remain on abx or maybe even a combo abx to continue to treat some source of infection.

[Tattoomom]

My son used to feel rapid relief from prednisone within 2-3 days. It was like a sign of relief flooded over him. While prednisone is an immuno-suppressant, I've always been told that it take extended use before it will compromise your immune response. 10 days is a normal course for poison ivy and my pedi has always said there's no suppression for many weeks. So I'd guess that what you're seeing is relief from inflammation. It makes me wonder if there isn't a chronic infection of some kind still lurking. I'm glad it's bringing such great results! Not sure why you were trying to lower the zith dose but perhaps this suggests she needs to remain on abx or maybe even a combo abx to continue to treat some source of infection.

The fact that she responds so well to steroids, does this mean she's a good candidate for IVIG? Any ideas on how to find out if there is an infection lurking? We have an ENT appt. scheduled for July 11th to see about a T & A. We have a wonderful ped who has helped us thus far and she wanted us to lower the daily dose of Zith to M,W,F, but obviously, that back fired. Any advice on combo abx?

[EmilyK]

My son has a rapid response as well. Enjoy the prednisone vacation!

Edited June 27, 2013 by EmilyK

[LNN]

 

My son used to feel rapid relief from prednisone within 2-3 days. It was like a sign of relief flooded over him. While prednisone is an immuno-suppressant, I've always been told that it take extended use before it will compromise your immune response. 10 days is a normal course for poison ivy and my pedi has always said there's no suppression for many weeks. So I'd guess that what you're seeing is relief from inflammation. It makes me wonder if there isn't a chronic infection of some kind still lurking. I'm glad it's bringing such great results! Not sure why you were trying to lower the zith dose but perhaps this suggests she needs to remain on abx or maybe even a combo abx to continue to treat some source of infection.

The fact that she responds so well to steroids, does this mean she's a good candidate for IVIG? Any ideas on how to find out if there is an infection lurking? We have an ENT appt. scheduled for July 11th to see about a T & A. We have a wonderful ped who has helped us thus far and she wanted us to lower the daily dose of Zith to M,W,F, but obviously, that back fired. Any advice on combo abx?

 

Dr K and other docs have said that a positive response to steroids suggests a positive response to HD IVIG because it supports the idea that you're dealing with an autoimmune response. However, while prednisone was enormously helpful for my son several times over the years, our one HD IVIG was a horrible experience because he had undiagnosed lyme and it overwhelmed him. So my scientific study of one showed me this hypothesis is not true for everyone.

 

A T&A was a big help for my DS - he had been on and off abx for a year and always relapsed shortly after abx stopped. When we did the T&A, he improved dramatically - for awhile. He likely had strep in his tonsils or adenoids that had built a biofilm or had otherwise grown resistant to the abx he'd been on. Then, as I said, there was lyme underneath it all and he eventually required many additional years of treatments.

 

As for testing for additional infections, I'd wait until after the T&A and see how she's doing. If a few months after a T&A, you still see symptoms, I'd find a doctor willing to order an Igenex lyme test and test for mycoplasma antibodies. I would not recommend doing IVIG prior to testing at least for these two infections and I would not rely on a standard western blot for lyme. My kids were negative on the standard WB but had multiple, significant bands positive on Igenex. But as I said, do the T&A first and perhaps you won't need to go down this road at all.

 

FWIW - when my son was in an auotimmune flare, prednisone gave us all a sigh of relief. When he's had it prior to Pandas and once when he was not in a flare, it made him agitated and hyper - the way it makes "normal" kids. So in that sense, prednisone was a good confirmation that we were dealing with autoimmune inflammation when we used it for flares.

[Tattoomom]

We did test for mycoplasma, which was negative. Never tested for Lyme, but she's never had a tick bite. Not sure if there's other ways to contract it?

[cobbiemommy]

My son also responded wonderfully to steroid taper. It is wonderful to see your happy child for a while! Dr. B says that a positive response to steroids means an autoimmune reaction is happening and that IVIg should bring relief. That held true for us until Cigna pulled the rug out from under us. We have a CDC positive test for Lyme, and clinical diagnosis for Bartonella.

 

Wish he could be taking steroids right now....

 

Ticks can be as small as a poppy seed, easily missed on a busy child.

 

Best of luck to you.

[lfran]

So ivig worked even with lyme and Bart?

[cobbiemommy]

It helped when it was administered every eight weeks. It was a life saver, for him and for us.