First, an apology. I have been posting mostly on Facebook so this site has been neglected. Fortunately, most of you have followed me there. This blog will soon be linked to the new Facebook site for Ryans PKU Foundation. More frequent updates of the day-to-day of loving an adult with PKU will be better for all of us.
Lately, I have been turning into the over-bearingly protective wife. That is not good for either of us, but Owen is just so fragile right now. This past month, like I feared, his body started to attack itself again. He started having low blood sugar issues again. Just this past Saturday he dropped to 48! The fact that he was still walking (more like stumbling) and talking just proved even more that his body is too used to working on its reserves. The issues we were having with his anxiety came forward again as well. This time he was the one to become upset about it and asked me to take him to his PCP. I was like a mother hen the entire time and the poor Dr. had to put me in my place. I just cannot help it! I love Owen so much and seeing him suffering just tears me up.
The result of the visit is what "should" have happened back in June when we last dealt with this cycle. Owen is trying a anti-anxiety medication AND we are FINALLY getting him onto an appetite stimulant. Since the calorie supplements have done absolutely nothing, we are both praying that this stimulant will help him put on the weight he needs. All three of his remaining doctors agree that if his weight goes up, then the blood sugar issues and quite possibly the anxiety issues, will get under control. Right now his body is worn out from working with what little reserves he has. He has lived essentially in starvation mode for ten years now (only 4 of which I have known him).
What did I mean by remaining doctors? We lost his wonderful neurologist to cancer and are completely heartbroken by it. He had experience with metabolic disorders and had even written medical journal articles on them. He truley understood Owen and the world of first-generation PKU survivors. We are going to miss you Dr. Ringholtz.