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?)
So, when that "halloween" Is coming soon And I did something for kids..... "Scarry peppers" filled by LP rice mixed with asian vegetable. 🧟🧟 #pku#lowproteinmeals
What is Large Neutral Amino Acid (LNAA) treatment?
this is an additional treatment for #PKU which is used in certain European nations. In my book, "Living with PKU," I discussed LNAA and you'll find an excerpt on my blog: https://pigpen.page/what-is-lnaa/
Early morning cooking with pregnant Clair, trying to make #PKU friendly but also slightly higher exchange snacks, can you guess what I'm making!?🤔🤔 #PKU
Trying to do better with cooking food for Lucy after the #ESPKU2023 conference. Taking some recipes directly, starting today with the Fate Birmingham Balti, recipe here: https://www.vitafriendspku.co.uk/pku/recipe/fate-birmingham-balti
Served with homemade sweet potato chips, 0 exchanges. The recipe made a good amount, still 2 portions left over for the fridge/freezer to eat another day. Vary the amount of red chilies depending on how spicy you want it. Lucy said it was "yummy" and she's looking forward to eating it again. #PKU#Dinner
We're going to need a year round fully catered option for #PKU. Back home from the #ESPKU2023 conference, first meal back and Lucy has already burned her finger on the pan. She's now banned from the kitchen.
@Aybara19 I’m 100% in favour of a year-round fully catered option for #PKU folks. I'm willing to burn my finger for the cause (who needs an index finger anyway???)
So @Aybara19 told me all he ever sees is my posts, and I think part of the reason is that the app he uses doesn’t have an easier way to view other posts, but also he isn’t following anyone else.
@soheb@Aybara19 In addition to following interesting people, I would also recommend following hashtags (like #PKU) for topics you're interested in because then you'll see toots from people you're not following that are posting about these topics (as long as someone else on your instance is following them).
In the web client, in order to follow a hashtag, either click on a hashtag in a toot or search for it, and then you get a follow button at the top.
Dinner
Alexa is a very handy tool for #PKU I can just go "Alexa what's 280/80?"
Jacket potato with butter, asda free from mozzarella and violife cream cheese - 3.5exc
17.5 exchanges used so far... Need to find 7.5 exchanges before the end of the day 😂👀
Midday snacks
Blue Ribbon chocolate bar - 0.9ex
OMV Milano Inspired No Salami Slices - 1ex (I've worked out around 4 slices = 1ex)
Frube Yoghurt - 1.5ex
Vegan Babybel & grapes = free
Going to try to make more of an effort to post here!
I'll start with my average food day now I'm on 25 exchanges.
Breakfast: 160g Koko yog with 66g of Frosties
Total exchanges: 4 #PKU