Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for April, 2013

Results from Monday’s test

The manometry was fun!  As much fun as sticking wires and balloons up your child’s butt COULD be…..

For most kids, it’s painful or irritating or annoying.  For Wilma?  She didn’t feel a darn thing.  The computer showed that her rectum and shpincter work just fine— but they filled the balloon to the extent that most kids desperately have to go to the bathroom and she didn’t feel any difference.

So we know that it’s not her hypotonia—- it could be a nerve ending issue.  It’s not just the autism or just the adhd. It’s not Hirschsprung’s disease.

So now we do further testing— is it a very mild spina bifida?  Is it a very mild cerebral palsy?  WHY can’t a six year old, whose muscles WORK, toilet train for #2?  The mystery continues.

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Manometry

Wilma’s manometry procedure will be Monday. Not surgery perse, but it might be kind of awful since it will be painful and they’re not putting her under. Just got a call asking us to participate in a study about how young children react to this procedure– that’s not a good sign that Monday will be a piece of cake for her. I wish I didn’t have to torture her with all this craziness.

The GI doc ordered a third cleanout and a third xray—-  the third xray STILL had plenty of stool in it.  But before the nurse could tell me to do another clean out (each clean out requires 40 + pullups, 4 days stuck at home going nowhere (so sick of her missing school), and an autistic child who is very mad at the whole situation)  — I said—- we’re NOT DOING ANOTHER CLEANOUT!  Multiple cleanouts which make her poop up to 17 times a day don’t clean her out—- they don’t make normal poop— they just make the frequency even greater.

Please let the manometry tell us SOMETHING about what she can or can’t feel!

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