soheb, to random
@soheb@pkutalk.com avatar

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.

#pku #LivingWithPKU #ClassicalPKU #diet #lowProteinDiet #LowProtein #phenylketonuria #phenylcetonurie

soheb, (edited ) to Youtube
@soheb@pkutalk.com avatar

In PKU news, a good friend of mine Paul has updated his PKU Insights YouTube channel to discuss some of the new things in the future.

You can check it out here (and subscribe to the YouTuvbe channel!)

https://www.youtube.com/watch?v=iMPr16eAuGo

soheb,
@soheb@pkutalk.com avatar

Also in more PKU news (it's all kicking off in the PKU community!!) @pcublogue has released a new blog post for Low Protein Nachos...

NACHOS!

Give it a read/watch, and for goodness sakes, please do subscribe via RSS/email to @pcublogue's newsletter!!

https://phenylcetonurie.ca/2024/05/01/product-low-protein-nachos/

soheb, to random
@soheb@pkutalk.com avatar

Didn’t do them last week as I had a cold, so didn’t see the point of being scolded for high phe levels which I had no control over.

soheb, to random
@soheb@pkutalk.com avatar

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:

https://videos.pkutalk.com/w/343pZ7gFhvhrN39QGAbQmH?subtitle=en

soheb, to random
@soheb@pkutalk.com avatar

Made myself some stir fry noodles the other day!

It was actually quite nice!

soheb, to food
@soheb@pkutalk.com avatar
soheb, to food
@soheb@pkutalk.com avatar

Made myself some low protein burgers using the Promin burger/bun mixture. They both tasted great! I think it would be better with a leaf of lettuce, some tomatoes, and some vegan cheese though...

soheb, to random
@soheb@pkutalk.com avatar

So… just tried the Promin chicken burger from the ESPKU conference and... it's a little grainy??

Did anyone experience this or is it just me??

soheb, to random
@soheb@pkutalk.com avatar

Has anyone tried the GMPro powder/drink in comparison to the PKU Sphere? What did you think of it?

soheb, to random
@soheb@pkutalk.com avatar

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?)

  • according to me

https://mailchi.mp/b559d165908d/pigpen-newsletter-pku-brain-injury-and-mental-health-9135032?e=c53e4b7d0f

soheb, to food
@soheb@pkutalk.com avatar

So I found these two low protein items from Tesco that seem suitable for PKU folks! Here is my little review:

The spring rolls: was ok. I think I prefer normal vegetable spring rolls. It’s 1 exchange for each spring roll too 😒

The tempuras: Oh. My. God. These are sooooo delicious!! And at 0.5g of protein too per tempura (half an exchange for PKU UK folks).

Cook from frozen 15-17 mins New TESCO Plant Chef 10 NO-PRAWN TEMPURAS 100% PLANT BASED Jackfruit & King Oyster Mushrooms in a seasoned gluten free batter

soheb, to Health
@soheb@pkutalk.com avatar

New blood spots!

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.

MarkMaguire, to pizza

TGIF - pizza night for my kids including our youngest with PKU low protein diet. Margherita pizza, no protein: Mevalia low protein pizza base, Violife Mozzarella flavour topping, Tesco pizza sauce.:chefkiss:

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