Little Monkey went in for a regular genetics check up. The visit went well and he didn’t cry for his blood draw. He is still growing, just at a lower pace than “normal” kids. He has made it to the 17th percentile for height! (We didn’t figure he’d ever be the tallest kid in class!) He kept asking when he could get on the table for his blood draw but once his nurse came in, it was a different story. He still did a great job and his nurse gave him a Shrek watch for doing so good! Little Monkey was very excited for the watch because he likes Shrek. We discussed in more detail starting Little Monkey on a drug trial to see if he is a responder to Kuvan. Kuvan helps the body process phenylalanine, thus lowering blood phe levels and/or allowing for a more liberated diet.
We have been given the free 30-day trial medicine of Kuvan but have not yet started the trial. We found out what our insurance will cover, if Little Monkey does respond. For now, we will not be concerned with the deductibles and copays; it might not matter at this point. We will cross that bridge when we get there. We have to take another blood draw to see if Little Monkey’s blood phe level is at a decent level. (His last level from this appointment was 2.6. This is a good level but they want one more to see if it goes up or down. If it goes down, we will not be able to start the Kuvan trial. If it is the same or has gone up some, we will be able to start the trial whenever we are ready.)