Update - first strep since IVIG

[pixiesmommy]

We've had strep for 7 days now and are all on abx (I think this was day 6 for Pixie) and she seems to be going into slight exacerbation. We wondered if we were imagining things, but last night she wet the bed, so apparently it is real. We emailed Dr K again this evening and are waiting to hear back from him. Strep is still going around (rampantly!!) in all the schools in our area, so I'm sure she's getting heavy exposure. We're holding our breath, but will keep you updated.

[peglem]

We've had strep for 7 days now and are all on abx (I think this was day 6 for Pixie) and she seems to be going into slight exacerbation. We wondered if we were imagining things, but last night she wet the bed, so apparently it is real. We emailed Dr K again this evening and are waiting to hear back from him. Strep is still going around (rampantly!!) in all the schools in our area, so I'm sure she's getting heavy exposure. We're holding our breath, but will keep you updated.

Ick, I can feel that sick heaviness in your chest. The oh-no-not-again worries. Bed wetting is an early sign for my daughter, too. Thanks for the update, and I hope this gets resolved quickly for your family and pixie is back on track!

[dcmom]

pixiesmommy- uugghh! I am so sorry. My daughter had the flu (H1N1 probably) after she was doing so great post-pex. Once her fever subsided, 24 hours later she started into an episode. It was clear it wasn't a mild flare, she spiraled down over 2.5 days. At that point we started a month long steroid burst. It stopped her exacerbation, and brought her back. She has remained great for 4 mos. It was a bump in the road.

 

I know Dr K only used steroid bursts for diagnostics (I think)- but if steroids have worked for pixie in the past, you may want to consider.....

 

Will be thinking of you...

[LNN]

I know Dr K only used steroid bursts for diagnostics (I think)- but if steroids have worked for pixie in the past, you may want to consider.....

 

I don't want to start the same argument that happened on another thread about prednisone. I absolutely agree that kids who might have TS should be forwarned about the effects pred might have for them. But since you know that's not the case for Pixie, I have to second what DCMom said. Contrary to Dr K's experiences, prednisone put my son into a complete remission after his last episode. I think you need to make sure the infection/triggering agent is eradicated first, but our personal experience is that if this is done, the pred calms everything back down on a more permanent basis, much like it does for asthma. (assuming the asthmatic doesn't go back into a dust storm)

[FallingApart]

Pixiesmommy, I'm so sorry to hear this! We will be thinking of you and hoping this is just a temporary setback. I know you must be terrified and filled with dread. I know I would be. Please do keep us posted!!!

[Fixit]

I know Dr K only used steroid bursts for diagnostics (I think)- but if steroids have worked for pixie in the past, you may want to consider.....

 

I don't want to start the same argument that happened on another thread about prednisone. I absolutely agree that kids who might have TS should be forwarned about the effects pred might have for them. But since you know that's not the case for Pixie, I have to second what DCMom said. Contrary to Dr K's experiences, prednisone put my son into a complete remission after his last episode. I think you need to make sure the infection/triggering agent is eradicated first, but our personal experience is that if this is done, the pred calms everything back down on a more permanent basis, much like it does for asthma. (assuming the asthmatic doesn't go back into a dust storm)

 

how quickly did you see the steriod work....was is during or was it post burst?

[Megs_Mom]

Just thinking of you and praying that this will be a minor and short lived exacerbation. All my best -

[sf_mom]

I am so sorry.....

 

We just got exposed to strep AGAIN last Friday. I could tell immediately when our son came home from school, I e-mailed his teacher, child was in school again on Monday morning and finally sent home to go to the Dr. and that is when I got called by the school. It turns out, it is the boy he plays with the most. This time it was 'pink eye' and I'm fairly sure its strep related due to my son's response.

 

He had night waking for the first time in over a month last night and extremely moody yesterday.... This is day 4 from when he was showing a response, I'm praying he'll pull out of this on his own too. Our son is home until I can confirm which way this will go for him.

 

-Wendy

[bronxmom2]

Unfortunately, this is why my son is no longer in school.

Good luck pixiesmommy and daddy!

[LNN]

how quickly did you see the steriod work....was is during or was it post burst?

 

We did 2 weeks full dose then 2 weeks taper last June. Saw changes around day 6-7 (he'd been sick for 10 months) . We saw an uptick in symptoms at the end, but a week later he had a T&A and he improved greatly after that. That's why I say the infection needs to be eradicated first. We think the strep was in his adenoids.

 

This past Christmas, he had an episode from exposure, not infection. Did three weeks of pred, with each week a lower dose than the one before. Saw improvement around day 5-6, about 90% at end of week 2, then 99% by end of week 3, 100% after that.

 

So our results were during the pred, but we also did more than 5 days each time. I don't think we'd have gotten a good response with just 5 days in either episode. Heck, even for poison ivy, they give you 10 days. But that's just my opinion based on our own experiences.

 

A side note - if your child doesn't swallow pills, request prednisolone instead of prednisone. It tastes way way way way better.

[earnestfamily7]

Oh my, I am sorry that Strep has struck... again! I will be keeping you and Pixie in my prayers. I hope this is a bump in the road and she will be on her way to wellness again soon.