Day 173: May 7th, 2013

I felt sick this morning and the hits just kept on coming.  Today we went to see the neurologist.  About two weeks prior to my husband leaving, my son started to have what could only be described as partial absent seizures.  He also is a really bad insomniac.  I got my daughter up for school, and she complained for nearly 45 minutes about stomach pains.  I thought that maybe it was from what I was feeling, as I had stomach issues this morning.  What many people don’t seem to understand that it’s incredibly difficult to get specialty appointments, often times we are put on month waiting lists, so skipping the appointment for illness was really not a very viable option.  The clinic is about 90 minutes away.  I didn’t want to send my daughter to school, only to get a phone call well into the appointment to come and get her.  Most of the people on the authorized pick up list are not even in the area anymore, the joys of a military life.

            I packed up three kids, and took off to Pensacola.  The doctor ordered an ambulatory EEG.  This is similar to a sleep deprived EEG (they hook nodes up to your brain and measure your brain activity), but it’s 24-hours long.  In addition, they want to do a sleep study to make sure we put him on the right sleep aide.  Right now, he is Risperadone, which is an anti-psychotic.  This medication has some nasty side effects, and is only a last resort for violent children.  My son is not violent or psychotic, so we are opting to wean him off the drugs.

            This is the wonderful thing about autism spectrum disorders, it seems that the professionals really don’t know what’s going on; everything is a guess.  You are constantly taking your child on and off medications, removing food groups from diets, and doing invasive and noninvasive tests to see how you can best learn to deal with the severe symptoms.  I don’t begrudge people for having the same autism diagnosis as I do, it’s riddled with its own challenges, but there are days were I wish this whole Guinea Pig experiment will stop.  At this point in time, it can’t stop unless we find the right combination of diet and medication to help my son achieve what he’s capable of.

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