Hi Charlie, I was put on the PKU diet way way back in 1964. The diet was in its very early days back then. Although I lived in West Yorkshire my mum and dad had to get all the special foods like bread and milk substitute direct from the children's Hospital in Liverpool. there was no such thing as exchanges, everything had to be measured and weighed.The milk substitute was called Prosperol Emulsion and it tasted absolutely horrible. I had to have a protein supplement called Aminogran which was equally foul tasting. You sound to be doing excellently well on Kuvan, I hope you continue to thrive on it. All the best for the future Charlie.
You are a very impressive young man and your family will be very proud of you! As a PKUer myself I know your troubles with the school stuff I have classical PKU. It is not as severe as yours. I was on 7 exchanges a day. I have been able to increase my exchanges somehow now that I am older. The world feels like a much better place when you can have more exchanges! All the best for the future, it looks bright.
That's amazing! So happy for you! How is your response to Kuvan compared with other PKU patients? I just want to get a sense of how well this might work out for my child.
I'm so happy that you're doing so much better! That's great! I'm just barely starting to learn about PKU so I'm sorry for not knowing what exactly you mean by saying "exchanges", would you, or someone, be able to help me understand? I see it has something to do with food, almost like a point system? Thanks for any info that can be provided :)
Stephan-Angelica Johnsen exchanges is the about of protein that's in a food, so if there's 1 gram of protein in 6 chips then it will be 1 exchange 1 gram of protein =1 exchange
Hey, I might be going on kuvan but my pku isn't as servear as this boy's, I'm on 9 exchanges or 9 grams of protein each day but as I've started college my blood levels or phe levels are becoming high on a regular with my dietitian not being overjoyed about it, kuvan might be good for me as sometimes I struggle with eating patterns and currently have dropped out of college early.
great talk Charlie. so pleased to hear your life got easier after kuvan
Hi Charlie, I was put on the PKU diet way way back in 1964. The diet was in its very early days back then. Although I lived in West Yorkshire my mum and dad had to get all the special foods like bread and milk substitute direct from the children's Hospital in Liverpool. there was no such thing as exchanges, everything had to be measured and weighed.The milk substitute was called Prosperol Emulsion and it tasted absolutely horrible. I had to have a protein supplement called Aminogran which was equally foul tasting. You sound to be doing excellently well on Kuvan, I hope you continue to thrive on it. All the best for the future Charlie.
You are a very impressive young man and your family will be very proud of you! As a PKUer myself I know your troubles with the school stuff I have classical PKU. It is not as severe as yours. I was on 7 exchanges a day. I have been able to increase my exchanges somehow now that I am older. The world feels like a much better place when you can have more exchanges! All the best for the future, it looks bright.
What a star! I hope you tinue to enjoy life -- and food!
That's amazing! So happy for you! How is your response to Kuvan compared with other PKU patients? I just want to get a sense of how well this might work out for my child.
I'm so happy that you're doing so much better! That's great! I'm just barely starting to learn about PKU so I'm sorry for not knowing what exactly you mean by saying "exchanges", would you, or someone, be able to help me understand? I see it has something to do with food, almost like a point system? Thanks for any info that can be provided :)
Stephan-Angelica Johnsen exchanges is the about of protein that's in a food, so if there's 1 gram of protein in 6 chips then it will be 1 exchange
1 gram of protein =1 exchange
Oh wow i would never have guess this! Thank you so much!
Stephan-Angelica Johnsen It's okay, I'm just glad someone is learning about it as most doctors don't even know about pku, it's like we don't exist
Hey, I might be going on kuvan but my pku isn't as servear as this boy's, I'm on 9 exchanges or 9 grams of protein each day but as I've started college my blood levels or phe levels are becoming high on a regular with my dietitian not being overjoyed about it, kuvan might be good for me as sometimes I struggle with eating patterns and currently have dropped out of college early.
did you get to start on kuvan?
Awsomiihill nah not yet but I'm sure I will I'm of the age rage for it
Thanks mate i have pku and I hate myself for it
I can't believe I have pku and don't understand a single term
What do you mean your levels were low? Isn’t your PHE supposed to be low for pku?