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Old Mon Mar 14, 2016, 12:41 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by curlygirl View Post
Hello! It's been a few months since I updated and wanted to again.

1) My son got strep twice over New Year's. Really it was one time but Amoxicillin didn't cure it so we had to get a second dose of antibiotics of Augmentin. His numbers always take a big jump on Augmentin. The excitement was that WBC went from 3.5 (bad), to 10.1 (also bad, for different reasons), to 5.5 (good). Also, on Augmentin his platelets went to 119k - a new high after falling to 35k after trying to taper the cyclosporine. At the same time I feel that: 1) Between ear infections and strep his only big jumps have been after Augmentin, and 2) the entire purpose of my original post - where he had 8k platelets, then made 70k on his own, then fell to 6k, was when he was on Erythromycin after he started wheezing - makes me think he needs a long term antibiotic. Has anyone else's numbers improved on an antibiotic? His numbers stay the same on cyclosporine but don't "go" up. I'm starting to get thankful for when he gets an ear infection because I can expect the jump in his numbers. I wish someone would just try putting him on 3 weeks of an antibiotic just to see what would happen but I can't get his hematologist or pediatrician to try it. His hemoglobin got down to 9.4 but is now back up 10.1.

2) He has one heck of a wart on his foot from the long term cyclosporine (it came back immediately upon restarting full strength cyclosporine). It is huge. I tried the salylic acid for 6 months and have now moved on to Vicks VapoRub, which is helping. It starts to die but then he takes a bath and the wart regenerates amazingly huge with water. Really, it's like a gremlin, I wish I could post a picture. We have an appointment with a dermatologist on Thurs but most treatments are contraindicated on immunosuppresive drugs. Does anyone have any advice?

Thanks! I hope you're all doing well!
Hi curlygirl,

I would definitely get the growth on his foot checked out right away. It could be that his body is trying to fight an infection, but because of the cyclosporine, it is not able to ward it off. However, maybe the antibiotics are helping his immune system fight the foot infection, but they are not given for long enough??? Just thinking out loud here...

I know that when my daughter had a skin infection, the dermatologist prescribed a month (!) of antibiotics to get rid of it, and it did take that long! So perhaps that is all your son needs to help his foot heal and his counts to recover??? It would be worth consulting with a dermatologist.

As another data point, when I've been on antibiotics for an infection, I never saw a rise in my counts.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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