Tuesday, August 31, 2010

Update on Annie (TMI Warning Ahead!)

Annie just started 3rd grade and is loving it.  Molly is excited that she gets to be at Annie's school with her too.  Generally, Annie has been very happy and healthy lately.  However, she is still battling side effects of the antibiotic she took about a month ago when her doctor suspected she was developing pneumonia.  (Just a warning: This post may contain "too much information" for some of you.)

The one dose of clindamycin that Annie took a month ago has seemed to completely throw off her entire GI tract.  It is such a powerful antibiotic that it killed off all the "good" bacteria that's essential to normal GI function.  This has led to several episodes of diarrhea each day and large blow-outs every morning over the last month.  Which isn't all that bad in typical potty-trained children, but cleaning up after an 8 year old in diapers has been rather exhausting, especially each morning when it's nearly up to her neck and over the top of her tummy and bathing her is not a quick or easy thing! 

At first we thought the "good" bacteria would recover once the clindamycin was out of her system, but after a couple weeks, the diarrhea only got worse.  We quit Miralax after just the first couple days--a drug she's required since she was a baby because she's always been so constipated.  We also decided to eliminate the extra fiber from her diet, but that made no difference either.  After a couple weeks of diarrhea, Annie started menstruating, so we thought she might be having diarrhea related to that. We were at first rather alarmed since we thought she had started bleeding from her bowels, so we were grateful to discover she had only started her period--which is rather normal this early with Aicardi Syndrome. So the diarrhea continued for another week, until we finally called the doctor to figure out how to stop it.  He put her on acidophilus and lactobacillus to help restore the "good" bacteria.  After 5 days of that, she is still not showing any improvement.  Now after 4 weeks we are starting a new antibiotic, flagyl, to see if we can get her better.

It doesn't sound like too complicated of an issue, but since Annie takes Cipro prophylactically, it impacts the bacteria in her system.  With all her diarrhea, stopping the Cipro would most definitely cause a UTI which would only cause need for another antibiotic.  We're hoping that Annie responds well to the flagyl, but highly suspect that it will cause vomiting, especially with needing 3 doses a day!  If we continue a full treatment of flagyl with her vomiting, that could cause dehydration and an increase in seizures if her other meds don't stay down.  And if she can't keep the flagyl down, it obviously won't solve the diarrhea.

So we'll start the flagyl soon and just hope that she can keep it down. We are SO grateful that our insurance covers chux pads so I'm not having to wash Annie's sheets each morning, and we learned quickly not to put shorts on her at night.  And just this last week we learned we can't put a shirt on her at night either, and are even needing to start pinning a chux pad to her top sheet since I've had to wash it and even her quilt too many times lately.  I'm amazed that she hasn't gotten a rash until just today, and we feel so blessed that she is otherwise so happy and healthy!

1 comment:

  1. Oh, Jodi!
    I'm so sorry for all the GI troubles Annie is experiencing and for all the extra work it means for you. Annie is so blessed to have such devoted and loving parents! Is all this fluid loss affecting her weight? I'm glad you said she seems to be happy. Hopefully changing up her meds will solve the problem. I sure miss you down here. Sometimes I catch myself looking for the row of curly blond hair at church, even after all this time! Thank you for keeping such updated posts; I am always wondering how you and your family are doing. I hope Molly is enjoying school- I'm sure her class loves her! Also, thanks for sharing your photos- I am so impressed!

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