I told you over here that Little Monkey was getting ready to start a drug trial hopefully. Well, he had the next blood draw done and his phe level actually went down to 2.5. Not much of a change from 2.6 but not the direction we wanted his levels to go in order to start the drug trial.
After much discussion with the drug company and our insurance, the doctors have decided that we are not going to do things their way but that we will do the drug trial as they want. The insurance doesn’t want to cover the dosage, so they want us to do a trial at a lower dose to see if he responds. There is a chance the he will not respond on the lower dose but may respond to the higher dose. The current plan is to just try the higher normal dose and see what happens. If he doesn’t respond, we are done. If he does respond, they will back him down on the dose to see the difference in his response to appease the insurance company.
Since his level went down, we are raising his daily phe allowance by 15mg of phe a day and in two weeks we will do another blood draw. Based on everything we have done already, this should show an increase in his phe, allowing us to start the drug trial. It should not raise his level to an unsafe range but just to a point that we will be able to see if he does respond to the drug. Hopefully we will get to start this soon and see if we even respond. I am ready to just know and then we can handle moving on from there!