Tuesday, December 15, 2009

Pinch hitting babysitting.

Eliana is back in Columbia for a few weeks for the holidays, so since my parents are in between nuclear power plant gigs, they are our pinch hitters for babysitting.

A pretty classic photo of what goes on when my parents are babysitting:

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Pua pua is the eager feeder, Gong gong is play furniture. Edda loves being the center of attention and Ruby is hoping for a meatball.

We finally got some results from August's trip to Johns Hopkins. I have not been pestering them about the test results because I felt like there wasn't going to be any earth shattering news (OMG, you mean her brain is making weird EEG traces?!? you've got to be kidding me!! - ha ha.) but last week I got kind of a frantic email/phone message combo that said that Edda's pH probe test came back and she has pathological reflux and we needed to put her on Prevacid pronto. I was surprised and actually a little bit skeptical because we have so few issues with her eating and I would actually say that there are no symptoms of reflux - no vomiting, no crying associated with meal times, no fussing on lying down, etc, etc..

So we went to our local pediatrician who said that she was happy to write the script for Prevacid and that we can follow up with a GI specialist (which we don't have). We asked what would happen if we left reflux untreated and they said, well, long term exposure to stomach acid could lead to esophageal damage. So then we asked, well since she has no syptoms of reflux, what do we look for if we give her the medicine? See if she gets happier? It's kind of a weird mystery - was the Hopkins test a fluke? Is Edda in discomfort all the time and not really complaining (that would be very much like her doctor-adverse mom)? Who the heck knows? The world is full of mysteries.

My guess is that we'll give it to Edda for a month or so and we'll see no difference and then we'll stop giving it to her. I am a dedicated reader of special needs blogs, the Rett Syndrome ones I always keep on my blog roll, but folks with kids that have other issues always drift in and out of my list as my interest in them waxes and wanes. So it doesn't help that like 2 weeks before we got this suggestion that we put Edda on reflux medication, I read that the author of this blog was reading two other blogs that talked about kids who were hospitalized due to long term reflux medication use - and for the life of me, I can't find the blogs that the person is referring to. It's driving me a little bonkers.

3 comments:

yamster said...

What an awesome photo. I love everyone's expressions!

Caitlyn said...

We did many trials with Caitlyn on prevacid. It never seemed to make a difference in her mood...Then we tried it again about 18 months ago wondering if it could be that her sinus and allergy issues were actually reflex. Wouldn't you know it, we were right!! Caitlyn was having constant sinus infections that were being caused by her refluxing into her sinus cavity when she sleeps. So when she gets another round of two or more infections, we wonder if raising the prevacid is what needs to happen! I hope it does something for her!

sherah said...

Love the pix of Ruby!!!