Autism and Medical Tests

I am a scientist, and I like data.  My attitude towards medical testing has generally been “tests, please!” as long as my insurance is paying for it, anyway.  I want as much information as possible, especially when it comes to my health.

I had an experience yesterday that made me question if this is the best approach.  When my daughter was diagnosed with Autism Spectrum Disorder, we were offered an array of of testing, including an EEG, a brain MRI, and blood tests.  The doc said we could get it all done in a few hours at the hospital, and the kiddo would be sedated through the whole thing.  Our insurance would cover it 100%.  So of course we said yes, because we wanted as much info as possible about what’s going on with out daughter.

Yesterday was our scheduled day of testing at the hospital, and it was traumatic to say the least.  First, she wasn’t allowed to eat or drink for many hours beforehand, which made me anxious because her growth has been poor so I hated not feeding her.  She didn’t seem to mind too much though.  When we got to the hospital, the first thing they tried to do was measure her blood pressure with an ankle cuff, and put a pulse and blood oxygen monitor on her fingers or toes.  All of this made her scream and thrash because she has severe sensory issues with people (especially strangers) touching her hands and feet.  In the end there was a lot of trauma all around and the nurses gave up without getting any of the measurements.

Then it was time for the sedation.  First we did a nasal spray that was quick and easy, and within 10 minutes she was asleep!  Victory!  …… Until the nurses tried to put the monitor on her foot and the EEG cap on her head.  Then we found out just how awake she could be despite the drug.  So they had to go to an IV sedative.  Having the IV placed was terrible.  Just completely awful.  It was a solid 10 minutes of screaming and struggling, and even after the sedative took effect, she was still sobbing lightly in her sleep state.

The EEG and MRI were normal.  Usually, this would be a cause for celebration and relief, but instead I feel like I put my daughter through a lot of trauma unnecessarily.  The good news is that according to the doctor, the sedative she was given means she shouldn’t remember the experience.  So perhaps it’s only me that is traumatized, but it still has me rethinking the idea of medical testing.  Unfortunately we just found out that her blood work shows anemia that is not iron deficiency caused, and so they will have to take more blood and do more tests.  More medical trauma to come.

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