Today has largely been spent taking care of a still sick Lanie. She wouldn’t eat without first downing ibuprofen and I have given her so much of the sticky, orange medicine over the last three weeks for high fever and pain that I was questioning whether it was okay to continue doing this even though on Monday her pediatrician advised it. I decided to give her a medicine break but after about 15 hours without anything, no food or liquids at all, I decided to call the doctor again to get some clarification.

They didn’t answer my question about ibuprofen on the phone. Instead, her doc decided to test her for strep so we went back in and the whole time I was there they were acting like I was just an unreasonable mom going nuts over her child’s standard cold virus.  They even apologized when the strep test came back negative and she couldn’t give Lanie antibiotics and why do doctors always assume I want antibiotics when my kids are sick? I don’t even take my kids to the doctor until they have been ill for an extended period of time. Like at least 3 weeks. Even with Lanie’s Down syndrome, I am still a wait-it-out type of mom in most cases.

I wasn’t being crazy. She’s been sick for 3 and 1/2 weeks.  She refuses to eat – won’t even nurse – unless she’s been dosed with ibuprofen. She’s lost a half a pound and weighs less than she did 2 months ago. This would be concerning for any child but is especially concerning for a child who is only 18 lbs at 17-months-old with a history of failure to thrive.

And I didn’t even call for an appointment anyway. I called to get clarification on the safety of continued use of ibuprofen in a baby. They asked me to bring her in.

She doesn’t have strep throat according to the rapid test. She may have hand foot and mouth disease based on a couple of spots on her left palm and a bunch of spots on her the left side of her face and left shoulder. Not sure I’m buying that one but whatever because I just wanted to know if I should be concerned about continually dosing her with ibuprofen.

I wish I had choices.  I wish there was a Down syndrome clinic here.  I wish my daughter’s doctor knew more than I did about Down syndrome. It would be nice if there was a note on the front of her chart that said something like, this child has down syndrome – please review history – Google is your friend. 

I have more to say but I’m getting more frustrated the more I write so I’m going to stop writing and go be awesome.

The picture is of Lanie at the doctor’s office. She didn’t stop fussing until she realized the paper crinkled. That worked to keep her calm for a good 2 minutes.

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Filed under: Down syndromeLanie

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