Going to be seeing some old friends, and also planning on having some phe exchanges outside.
What are folks tips and tricks for managing phe for foods that you don’t know (e.g. restaurant food)? Mine is skipping either lunch exchanges or both lunch and dinner exchanges to ensure I stay in the green…
Quite interesting a lot of the pros are trying to avoid social situations where one would make things awkward or inconvenient by explaining PKU rather than just rolling with it.
Also, I'm so with her on the selfishly making tea things!
Hello! @poconnor has released a new monthly newsletter, and in it there is a bit about batch cooking PKU food WHICH OF COURSE I'm going to study like my exam is tomorrow morning!!
If you have PKU or curious (also same about brain injury!), then check out the newsletter here:
There was a great panel talk by @poconnor about living with PKU and sapropterin.
One of the questions was "are you doing well with phe levels", and one of the points was that how life changes do have a severe impact on phe levels.
As someone who moved house quite recently AND had a job change, I am proof that big life changes as well as changes to routine absolutely do mess up phe levels.
My last bloodspot result came in, and it was 394umol/L!!
I’m so happy and proud of myself for managing to keep my levels down for a whole entire YEAR!! Past me wouldn’t believe such a thing, and yet here I am!! 😁🎉🥳🎊
Our very own @poconnor has written a new update to her newsletter!
All about the ESPKU including the best panel ever held*, and some details about brain injury. Not only that, but it closes on a final thought which-my word, I really needed that about now, so thank you Pauline!
You can read it here (and maybe subscribe, would you?)
Boil frozen mogo chips for 15-20 mins until mogo chips are soft in the center (like potato, you got to poke them with a butter knife to see if it's properly cooked or not)
My last blood test results came back at 570 umol/L!
The one before was 801 umol/L, so it’s nice to see such a drastic difference. It came down to a spice I regularly used having quite a significant amount of protein! Once that got cut out, my levels went down.
I really loved watching this presentation given by our very own @pcublogue! It's about his experiences with PKU. Goes to show no matter the language/nationality/culture difference, there are some things we all share the same, and @pcublogue put it brilliantly! Well worth a watch:
First finger prick didn’t get too much blood out. The second one did the trick.
Given how the second finger (my usual go-to finger) is hurting and the other one feels like nothing happened to, I would say I probably didn’t put the needle close enough to the finger. Oh well.
Bleuets 🫐
Bananes 🍌
Avocats 🥑
Lait d’amande
Sirop d’érable
20g de protéines de formule
Une bonne façon de commencer la journée
😋 💪🏻👌🏻
*
Blueberries 🫐
Bananas 🍌
Avocado 🥑
Almond milk
Maple syrup
20g of formula protein
A good way to start the day
😋 💪🏻👌🏻