Welcome to our PKU blog!
Our son Keir has Phenylketonuria (PKU). It was devastating news at the beginning as we had very little understanding of his condition and had to learn so much very quickly (learning to do heel prick test ourselves, giving him three different types of milk every feed etc.) We were also having our house extension built at the time so we had no kitchen and bathroom long periods of time. No denying it, it was a difficult time.
When we first found out about his condition, we wanted to know more. As it is a very rare condition not many people knew about it so we turned to the internet. I remember searching the web desperately to find out more about other PKU patients; what did their life look like, what do they eat, what did the supplements look and taste like and much more. I managed to find some stories about grown up PKU patients who were based in US. Although they talked about their diet when they were children, it was not relevant anymore as things have changed since then. What we found out made us more anxious about it all. I then promised myself to create this blog for other parents like us. If this is you, hopefully this blog will answer some of your questions, give a little bit of an insight what the future holds for you and your child. I can now say that I have a very happy son and the PKU is not much of a strain to our life. We enjoy food and life together as much as we would have done without PKU.
Keir is now a very happy 6 year old. He is full of cheekiness, laughs and energy (lots and lots). He is in Year 2 at school. He really enjoys school, he has made a very good progress with his reading and writing. He is very social, chatty at school and loves reading books. His school catering team has been fantastic and been making him low protein meals similar to the school menu. He really enjoys his cooked food at school and having school meals really helped him settle into school life smoothly.
It is almost impossible to detect he has a metabolic disorder by others. His food doesn’t look much different to the other food, it is usually full of lovely vegetables and tastes and smells great. So do not despair, initial shock is very normal and you will be rushed around to attend appointments and delivering heel prick test at first. Just hang on there, it will get easier and it is not as horrifying as it sounds at first. NSPKU, dieaticians and the nurse at GOSH have been life savers for us. They had the answer to every question we had and reassured us and we met some lovely PKU Families along the way.
If you have any comments or questions, I would love to hear from you! Happy Browsing! 🙂