Kyle is home, playing – and doing great. Some of the tests revealed that he is not aspirating, rather his stomach is very slow to empty – and causing him to more or less explode. The typical medicinal route is Reglan or erythromycin. Reglan is NOT the couse we intend on following, due to serious, irreversible side-effects in long term use studies (neurological damage). In addition, it’s not been tested or recommended for use on children – or for long-term use for that matter! Ugh, don’t get me started on reglan, it makes me sick to think of what doctors will knowingly prescribe to children without fully disclosing the risks.
So, needless to say, we’ll be going with erythromycin. Kyle’s scheduled to meet with his GI dr next week, but should have the script tomorrow. His GI doctor is not affiliated with Loyola, and we wanted to remain under his care for the remaining GI issues that Kyle has.
Should the medicine not work, we will be again facing surgery.
Also important to note – Kyle is back to his baseline of oxygen (1/8 litre at night, nothing during the day), and otherwise back to his happy – overly talkative self
Thank you for your thoughts and prayers during this time.