PKU watch by Lyndsey Regan Dietetic Technician Seventeen children with PKU aged from eight to 11 travelled from various centres to attend the NSPKU Edale outdoor weekend in July. Lindsey Regan, along with dietitian Cerys Gingell, accompanied three children from Nottingham PKU along with her colleague. Not only is the Edale weekend a fantastic opportunity to spend time with the PKU children doing lots of exciting activities, but it is a good learning opportunity for both the children and the dietitians. As a dietitian and dietetic technician, Cerys and I were able to spend valuable time with the children in our group, building better relationships in a less formal setting. The children responded well to this environment and felt they could be more open about their PKU diet. It was a pleasure to see the children from Nottingham having their meals and supplements with other PKU children and having the confidence to eat suitable meals outside of their own houses. For some children it was an opportunity to try new foods and amino acid supplements and all were able to learn positively from each other. We would certainly recommend this weekend for any children of this age group and for their dietitians. We returned the exhausted children on the Sunday afternoon to their parents, all delighted with a very enjoyable weekend.
Before long, they shout a ‘Goodbye’ to their parents… after all they are too busy meeting new friends. The activities begin with the icebreakers - lots of fun games that help everyone remember each others names. 5.00pm Teatime - What a fantastic menu! Low protein (LP) lasagne or vegetable curry all served with salad, free vegetables and the LP breads tasted amazing. For dessert the children choose between LP apple crumble, LP custard and tinned fruit and can choose which foods they want to make their exchanges up with: chips, peas, ice cream, yoghurts or single cream. They then carefully work out with a helper how much they need to weigh out on the scales. This is how it worked at every mealtime. The protein substitutes are distributed and the children race each other to drink these and enjoy chatting about which one they take and the number of exchanges they are allowed.
Delicious LP cake
6.45pm The evening activities begin…a treasure hunt in teams and word puzzles to unscramble - and of course the tuckshop opens. 8.30pm The children enjoy some time in their rooms to make new friends and eventually get ready for bed.
The Nottingham group
Edale Diary Friday 10 July 09 1.30pm Arrived on time at Edale YHA. It’s in a beautiful setting. All the children are waiting anxiously with their parents - they all seem very quiet at this stage!
Saturday 11 July 09 7.30am Rise & shine! Breakfast is served: a selection of LP cereals with LP milks, LP toast with Jam and marmalade, fruits. Or hot breakfast: LP sausages, mushrooms, tomatoes and LP toast/ fried bread. Exchanges are a choice of baked beans and yoghurts Protein substitutes are distributed.
9.00am After breakfast the Activity Coordinators divide the children and helpers into two groups. My group go to Monsal Head viaduct - it looks very high! Climbing over the bridge is scary, particularly when faced with children singing ‘I believe I can fly!’ 1.00am I'm so hungry… Lunch is served: LP sandwiches, LP sausage rolls, LP biscuits, fruit, jelly and LP cakes. Exchanges: crisps, Cheezley, single cream, yoghurts, ice cream.
Climbing Monsal Head Viaduct
2.00pm The afternoon activity is canoe/ rafting. Teams are split between the rafts and the competitions begin. Much splashing and fun with the water! 5.00pm Well deserved food: LP tomato and mushroom pasta, LP vegetable crumble, free vegetables, gravy, LP Scotch pancakes and fresh fruit. Exchanges: jacket potatoes, sweetcorn, yoghurt and ice cream. 6.00pm Archery in teams followed by an assault course. The evening ends with LP chocolate cake, a chocolate fountain with Vitabite and fresh fruit. Sunday 12 July 09 7.30am A hearty breakfast, then straight off for the morning activities. Half the group head off to Stannage Edge for rock climbing and abseiling whilst the others go to Higa tor for weaselling. 12.30 Lunch time: a yummy pack-up which we are all in need of! Goodbyes are said and the children hope to see their new friends again next year.
All tired out!
This trip currently runs yearly and is available for all children with PKU aged from eight to 11. It is subsidised by the NSPKU which can help out if financing it is a problem. The next Edale Activity Weekend is booked for July 16-18 July 2010. For further information and to provisionally book places, please contact Eleanor Weetch via email at dietitian@nspku.org
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NHDmag.com Dec ‘09/Jan '10 - issue 50
