Can steroids stop some episodes if done early enough?

[dut]

Hello

 

I know that steroid bursts are usually just used diagnostically to corroborate PANDAS diagnosis or prior to IVIG/PEX and symptoms will lowe ror halt for the time of the burst or a bit longer but are some people finding it can lower or stop symptoms for significantly longer than just the burst time alone? Has anyone had it stop an episode in its tracks and that particular episode not come back?

 

If anyone has found it to do this, does it work more if you do the burst as close to the start of the episode as possible?

 

Is it always wise to do treatment dose abx at the same time in case of strep hiding out?

 

Thanks....

[Buster]

If anyone has found it to do this, does it work more if you do the burst as close to the start of the episode as possible?

Is it always wise to do treatment dose abx at the same time in case of strep hiding out?

Dut, I'd be worried about doing a steroid burst without abx on board. The burst could suppress the immune response allowing growth of the bacteria if it is in the blood stream. In our house, the exacerbations seem often in synch with someone else in the house having strep

 

Buster

[dut]

Thanks for the response...

 

Our dd has just gotten over flu and it seems we're heading in to another episode. Super mild symptoms for a few days- OCD/nailbiting/hyper but they have ramped up tonight. She finished a 5 day course of zith last weds and had her biweekly zith proph tonight. Our ped sent us home with a 5 day sterroid burst to use if she ramped up.

 

Do you think we might actually be able to nip it in the bud with the steroids?

 

I will happily keep her on zith for the burst... I've stockpiled a fair amount for times like these. I am concerned though 'cos she has just had a nasty bout of flu that has wiped her out. Could doing steroids now, allow any virus still hanging around to come back full force?

 

Rock and a hard place is how it feels. I dunno, you just start to feel a bit smug and it comes back to bite you in the a***

[dut]

any more thoughts? I'd be grateful for any advice.....

[peglem]

When my daughter did a five day course of prednisone, she started getting sick on the 4th day with a upper respiratory infection. This may have been because she was cutting molars. Although she had a very good behavioral response to the pred, I wish I had made sure she was cleared of strep carriage before we did it. She was on full strength antibiotics at the time. I just think, like Buster said, suppressing her immune system allowed the strep to grow.

[dcmom]

Dut- You are exactly where we were a few weeks ago. My dd Julia came down with H1N1 a few weeks post plasma pheresis. About 24 hours after being fever free, I started to see a re appearance of pandas symptoms. I waited almost 3 days- wanted to be sure, before I used the steroids. She continued downhill those three days, so we started the burst. The first dose or two of steroids seemed to immediately halt the downward spiral, and by about 4 days she was almost back to 100%. She finished the burst (it was one week full dose, two weeks tapering off) a few days ago. While I don't know if she is the 110% she was post pex, she is getting close. She has been on daily zithromax non stop since August- I would keep her on daily zith (if possible) until she stabilizes.

 

So my vote is go for it.

 

My concerns now are: Is this temporary? How long until the prednisone is out of her system, when will we know if symptoms are just being masked by steroid, or have gone into remission?

 

This is her second burst this calendar year. That is six weeks on steroids. What if she gets sick again? How often can we do this?

 

I will see Dr Latimer this week, and discuss with her- but if anyone has any thoughts??

[P_Mom]

My son started to go into an exacerbation due to Pertussis this summer........a noticeable, concerning exacerbation....we gave him a steroid burst and it stopped the flair in its tracks....even made him better than before the exacerbation.....I say, yes, it can. And, I plan on giving a burst every time he has a CONCERNING (not mild one) flair. He has been on antibiotics for 2 1/2 years now.

 

Kelly

[dcmom]

Kelly- THANK YOU!!

[dut]

dcmom and pmom thank you :-)

 

That was the push I needed. I filled the prescription this morning and was probably going to give it anyway but this makes me much happier in doing it. She's not bad.. nothiing compared to full on episodes but her last major episode came on quietly like this and I'm worried that if I don't catch it early I won't catch it at all. She has had other minor flairs but this feels different in quality somehow.. feels as though it could go really sour.

 

and peglem and buster - I'll keep her on full dose strength abx thru the burst.

 

thank you for the replies folks, they really do make a difference not least to my emotional state! You feel having done this a few times it would get easier but it doesn't...

 

 

thanks again..

[dcmom]

...just to add, I think several kids on this board have had episodes post H1N1.

[dut]

anything with a fever more than a few hours seems to trigger us.. BBB integrity affected I suspect. ??

[momto2pandas]

I recently had my first episode in more than a decade, and managed to stop it completely in its tracks with steroids, which were prescribed with Augmentin. The Augmentin still hasn't cleared the infection several weeks later (and that's after two courses of Zith, prior to the Augmentin), but the neuropsych stuff cleared quickly with the steroids and hasn't come back. I had only had "PANDAS" symptoms briefly - few days - before I ran to the doctor for tx. It was a bizarre "blast from the past" week for me, though - even with the same clothing sensitivities, tics, etc. I had as a kid. Gave me renewed sympathy for my own kids.

 

 

Hello

 

I know that steroid bursts are usually just used diagnostically to corroborate PANDAS diagnosis or prior to IVIG/PEX and symptoms will lowe ror halt for the time of the burst or a bit longer but are some people finding it can lower or stop symptoms for significantly longer than just the burst time alone? Has anyone had it stop an episode in its tracks and that particular episode not come back?

 

If anyone has found it to do this, does it work more if you do the burst as close to the start of the episode as possible?

 

Is it always wise to do treatment dose abx at the same time in case of strep hiding out?

 

Thanks....

[Debbie1]

My daughter had a 1 week (plus a few days of taper) high dose steroid burst in December 2008 that put her PANDAS symptoms into remission for six months. She was on a prophylactic dose of amox during and after the steroid burst. She was going great (100%) until multiple strep exposures over the summer. Doctors are not sure whether the immunospressive effect of the steroid wore off at the six month mark, or whether the amox stopped doing its job at that point.