GI - gastroenterologist update

This was the first GI appointment that did not result in any blood draw recommendations.  He is on  the charts for height and weight and BMI, although in the low 10th percentile.  All good things considering where he's been. We're just going to keep doing what we're doing - he still drinks special formula from a bottle but the doctor says not to challenge him since he could easily get dehydrated.  So, even though he is four now we will let him have his morning and evening bottles while he gets better at drinking from a straw cup.  He is still on periactin (cyproheptadine) 1 mg three times a day about 1 hour before meals to stimulate his appetite.  It works really great for him.

Opthalmology appointment shows no strabismus

You've probably heard it before if you are reading this blog - "is there something wrong with his eyes? Could it be strabismus?"  I' had been hearing  this question for months from therapists, teachers, etc. Granted my son has uniquely shaped eyes but it didn't even occur to me that there could be anything medically wrong with them.  A visit to a Stanford opthalmologist ruled out strabismus and any other conditions AND his vision is age appropriate. Yay!

Whole Exome Sequencing

It's been a while since I last posted, but really we still have no answers.  What's new is that we are new pursuing the genetics route.  More and more tests are becoming available and we are going to be doing a whole exome sequencing.  The blood test looks at the genes that interact with the protein in the body. Don't ask me how it works, it's complicated. According to the geneticist it is a broad test but it can tell us a lot.  So, now we wait for authorization - apparently the test costs in the thousands. The blood is drawn from my son, me and my husband and sent overnight on ice to Texas - Baylor School of Medicine.