Finding Support

      Exchanges, phenylalanine, blotter cards, µmol/L... Phenylketonuria. None of these words meant anything to me two months ago. Now they're a part of my daily life. Even though Marigold hasn't started eating solids yet I look up the phe content for everything I eat, and everything that she might eat one day online or on an app I found on my tablet. I found a Facebook group where parents are always posting foods and their phe content, I really need to take everything from that group and make a list out of the posts! Marigold's clinic really hasn't proven to be helpful! My husband and I are considering moving as soon as we can just to have the opportunity to work with a different one. The people who work there speak with such a thick accent that it is impossible to understand them, and they talk down to my husband and I constantly. I'm not sure if they think that we are uneducated since we're in our twenties or what but we both are equally if not more educated than the nurse and dietician. I reminded them at our last meeting that I understand all the biological aspects of PKU perfectly thanks to my education but they continued to treat me like a complete moron. Like I said, we're hoping to move!

     The biggest help has definitely come from the Facebook groups I joined! PKU is so rare that I don't know anybody who lives near me who has experience with it. Social media has allowed me to come in contact with older individuals with the condition and parents of children with it as well. That support has helped more and been more informational than anyone at Marigold's clinic! I definitely recommend looking for support from people with first-hand experience with PKU!