Son does well on steroid bursts

[Christianmom]

I had a talk with my son last night, trying to figure this whole thing out, and asked him if there had been any good days or bad days that I had missed since he has been on lyme treatment. He said he hadn't noticed any particularly good or bad days since on the lyme treatment but said that by far his best day was about the 14th day after a 100 mg., 10-day prednisone burst (that he had done a couple of months before lyme treatment). I was floored by this as I had forgotten. He couldn't believe I had forgotten becaue it was so memorable to him in terms of improvement. Basically it was only 1 day of improvement and that day we were at a friend's house most of the day. He did do exceptionally well, but I just attributed it to the fact that these were special friends that he didn't get to see much. Anyway, my friend asked him to play the piano that day--something very difficult because it sets off his OCD. He got up and played a classical song from memory beautifully without missing a beat. You would have never known he was sick.

 

He told me last night that on this "best" day, he had very little trouble taking a shower--something that is always an issue normally. He said that is what he saw as the biggest improvement.

 

My son has been on prednisone three times--60 mg. 5-day prednisone burst, 30-day taper (can't remember the dosage), and this 100 mg. 10-day burst that I just described. He did well on the 5-day burst for 2 days, had no change (but no regression either) on the 30-day taper, and did well on the 10-day burst ("the best" as my son describes) for 1 day.

 

My question is, isn't this a possible indication that my son may not have lyme as he does well on prednisone, even at a whopping dose of 100 mg.

 

Thank you all for your treasured opinions!

[mama2alex]

If a child responds well to steroids, in terms of behavior and psychiatric symptoms, this indicates that the symptoms are caused by inflammation. However, that response does not indicate a lack of ongoing infection such as Lyme. It just tells you there's inflammation in the brain, something that can certainly go along with Lyme/coinfections.

[cobbiemommy]

I was thinking the same thing that Mama2alex said, "Inflammation". My son's best days were right after a steroid burst and right after IVIg, before we knew it was Lyme. Both things help with inflammation. I guess the one take away is that if it happened once that he had such a good day, then it can happen again. I tell myself that a lot!

[LNN]

Totally agree. It only means inflammation. It does not mean there's no lyme. My DS had awesome reprieves from issues when he was on prednisone. But it could not last because an active infection was always there, causing inflammation all over again. It's only been thru a year of treating for lyme, bartonella and for pyroluria that we're finally seeing the good things we used to see on prednisone - only this time it's more lasting.

 

I think your son's response was a glimpse into what's possible. Now it's a matter of finding and treating the triggers.

[Christianmom]

Well, I'd like to pick everyone's brain again on this subject as your comments are all so helpful. Theoretically, if a child gets completely better (as a few on this forum have), doesn't that mean that there is no active infection, and therefore there is just inflammation left over from a prior infection that the steroids are removing--and the child stays well.

 

But, if the positive steroid reaction doesn't last, there is still infection. So therefore, in my son's case, there is probably still infection.

 

Does that make any sense to anyone?

[LNN]

Well, I'd like to pick everyone's brain again on this subject as your comments are all so helpful. Theoretically, if a child gets completely better (as a few on this forum have), doesn't that mean that there is no active infection, and therefore there is just inflammation left over from a prior infection that the steroids are removing--and the child stays well.

 

But, if the positive steroid reaction doesn't last, there is still infection. So therefore, in my son's case, there is probably still infection.

 

Does that make any sense to anyone?

 

That's generally the thought process we followed. When the things that should have worked didn't, it led us to the conclusion that something was still there, preventing recovery. Now that we're much closer to the root problem, he's much better. I think you're right to pursue the active infection idea.

[PhillyPA]

Kids with auto-immune encephalitis like NMDA encephalitis can receive high dose steroids, every month via an iv, for longer than a year. There is no infection. It just takes that long for the swelling to go down and stay down. It is an auto-immune process. It can take that long or longer for the inflammation to go down. This is inflammation that in a majority of cases is not seen on an MRI.

 

Steroids are used to reduced inflammation in most auto-immune disorders.

 

I know this is not your case because your child has Lyme disease but I wanted to pass along the information.

[Christianmom]

Kids with auto-immune encephalitis like NMDA encephalitis can receive high dose steroids, every month via an iv, for longer than a year. There is no infection. It just takes that long for the swelling to go down and stay down. It is an auto-immune process. It can take that long or longer for the inflammation to go down. This is inflammation that in a majority of cases is not seen on an MRI.

 

Steroids are used to reduced inflammation in most auto-immune disorders.

 

I know this is not your case because your child has Lyme disease but I wanted to pass along the information.

So the thought then with PANDAS kids is to treat the strep with antibiotics, then do steroids or IVIG until the inflammation goes away, assuming the strep infection is gone? I can see how the PANDAS doctors are thinking this way as they are quick to offer steroids and IVIG. But what if the infection isn't gone? And how do they know? And what if there is more than one infection besides the Group A strep? Sorry, just some random thoughts as I try to figure out all this PANDAS stuff. I do think, at least in my son's case there is still infection. Not sure if it's lyme exactly. The doctor is running lots more tests looking for infection--viruses, mold, gut anaylsis.

[dcmom]

We have successfully used IV steroids to stop/slow the autoimmune process post infection.

 

We are now feeling the quicker we can respond to a flare up with this type of treatment, the quicker the resolution.

 

For my kids, all signs of physical illness disappear, then we start seeing major pandas symptoms. I do not believe we have had chronic infection issues, except at initial onset (possibly strep thAt eas resistant to the abx used).