PKU challenge – Days 6&7

Day 6 – Saturday 27th June

Today is Saturday and this means one thing….a lie in? Wrong! No in our house, this is ‘gymnastics’ day! My youngest daughter is very keen on gymnastics and she gets incredibly excited about gym at 8:45am on a Saturday! You can tell how excited I get….!

So it was all rush, rush, rush as usual to get out of the door by 8:30am on a Saturday. I only had time for a few sips of tea with milk before we left. I grabbed a LP cereal bar and some fruit as we left. I also remembered to bring my flask with the rest of my tea so I can sit and drink tea with all the other mums/dads whilst we watch the gymnastics!

Mid-morning: PKU cooler when we returned home

Lunch was salad, hummus (1 exchange), cream cheese (1 exchange), LP mevalia toast.

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I tried a Lophlex powder (orange) this time – my daugher made it up for me with lots of water…300ml! But it was very refreshing and tart and reminded me of an effervescent vitamin drink.

In the afternoon I had a “treat” snack of a cupcake (0.8g protein) with Betty Crocker icing…I know I am a dietitian and not supposed to eat cakes but everyone needs a treat sometimes (everything in moderation!) I also had a cup of coconut milk.

7pm: PKU lophlex LQ – yellow top + 2 slices LP toast with spread before going out for the evening.

Evening out: The food at the party we went to was a Hog roast…it smelt soooo delicious and took all my willpower to resist it!

I had boiled potatoes, couscous salad and a green salad. There were a few blocks of feta cheese in the salad so that was a bit of extra protein. I estimate that I had 5 exchanges in total in this meal.

So that means I went over on my exchanges (total of 9 ex’s for the day, instead of 7)

Very late (early) night home….

Day 7 Sunday 28th June – International PKU day!

I would definitely not recommend this but I skipped breakfast as I only had time for a cup of tea before heading out to take my daughter out for a sports activity. Ooops! Not a good way to start the day and I wouldn’t recommend it. I did remember to take a LP cereal bar and a Lophlex LQ pouch along with me to eat/drink whilst I watched Lily.

When we got home, there was only a short break before we were all out again to meet friends in London. We stopped at Wagamama’s for lunch and I found a very PKU-friendly meal at Wagamama’s….crumbed aubergine and sweet potato with rice and salad (Yasai Katsu curry) with a ‘Super Green’ drink which is a mixture of celery, apple, mint and lime. It was absolutely delicious. I normally have the Chicken Katsu Curry when we go to Wagamama’s but I have also had this vegetarian dish in the past. I estimated the rice to be 3 exchanges and the crumbs probably another 1g protein, so about 4 exchanges for the meal. I also had 2 vegetable dumplings which I estimated as another 1-2 exchanges, so a total of 5-6 exchanges for the whole meal.

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I took a ‘PKU air’ along with me but forgot to drink it at the restaurant! By the time I remembered to drink it, it was warm and was not very nice! I only managed half the pouch as it made me feel so nauseous drinking it warm.

The afternoon was spent on a ‘Duck Tour’ of London….a “car” which also goes in the water. There was much excitement when we “drove” into the river Thames!! We then went to Pizza Express afterwards and now I have a HUGE confession to make….I ate pizza! IMG_9953IMG_9954

 

 

I am sorry but my PKU challenge ended at 5pm on Sunday as I could not give in to the temptation of a delicious cheesy pizza. I know I am terrible, I apologise, I am only human!

An option at Pizza Express for people with PKU is a gluten-free base without cheese…adult GF base has 5g protein and a children’s (piccolo) GF base = 1.2g protein.

salads are also an option…

Lessons learnt…

This week has taught me so much, not only about PKU and keeping to a strict diet, but about the feelings that it brings out in you/me…feelings of guilt, shame and temptation.

I am filled with the utmost admiration and respect for all of the children and adults out there with PKU or any other restrictive diet as it is very challenging indeed, especially as life tends to get in the way (as I found this weekend!)

I hope you have all enjoyed reading about my experiences this week during the ‘7 day, 7 exchange’ challenge. It has been both an interesting and humbling experience for me.

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Paula x

 

 

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7 thoughts on “PKU challenge – Days 6&7

  1. Ah Paula you have NO need to apologise to anyone at all- as a PKU, I am so delighted that you and the other dietitians have done the 7 day challenge at all. It’s so encouraging to see that you have the same struggles we do – and sometimes give in to the struggles, just as we do. I have certainly done the same as you many times and given into that temptation and suffered the consequences -phe and feelings wise! Once again, thank you so so much for putting yourself through this. It means a great deal.

  2. PS I hope you don’t mind, but I’ve shared this post on my fb timeline, as it really said everything I feel about PKU and our day to day struggles with the diet.

    1. Hi Angela
      I don’t mind at all…share away! It is important to get the message out there and to create awareness for such a rare condition that most people have never heard of.
      Thank you for your comments…I so appreciate your support. It makes it all worthwhile and I am filled with admiration for you for sticking with the PKU diet, I now have a deeper understanding of how difficult it can be!
      with very best wishes,
      Paula

  3. Hi Paula!
    Not sure where I’ve been this week but only just seen your last 2 entries! Well done you on completing another PKU challenge!!
    I think you’ve hit the nail on the head here. Managing PKU and family life can be hard! Yes it can be done, it has to be done for our children’s wellbeing, but it takes lots of organisation,!planning, routine and timing. We eat out a lot, but without the planning in place our only option is Pizza Express (please PE never ever stop the gluten free bases!) We’ve walked out of many restaurants because there’s not something suitable for Jacob- it’s not always fair for him to have salad and chips (which annoyingly he’s not keen on!) Infact a few weeks ago Phil and I had a child free weekend in Berlin. Over one meal in an Italian place I sat there nearly in tears saying ‘How is Jacob going to do THIS?’ Of course he will. He will cope and manage and do it all, it’s just not always going to be an easy ride…
    I think it’s great you’ve done this and lived this journey with us all. I will be reading days 1-5 now…
    Lots of love to you and your girls from all of us xxx

    1. Hi Amy
      Thank you for your comments…I so appreciate your support and encouragement! It has been such a humbling experience this week and I am filled with admiration for Jacob and all the other children and adults with PKU out there!
      Lots of love to you and your lovely family xx

    1. Hi Audrey
      Thank you for your comment! Yes you should be proud of her….it is not an easy diet to cope with, but I hope I have given her some ideas and inspiration!
      Best wishes,
      Paula

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