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Here are some suggested organisations that offer expert advice on special needs.

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PKU question

6 replies

sobeda · 28/08/2008 13:53

My nephew (aged 7) has PKU which up until now has been difficult to manage but possible under the close supervision of a PKU specialist. Over the last 6 weeks he has lost 1.2kg and his levels are really high, basically because he is not getting enough calories and his poor little body is essentially eating itself. My sister is trying all sorts of ways to get more calories into him, without introducing too much protein. She's adding cream and butter to pasta, and baking lots of PKU friendly muffins etc (all of which my nephew hates to eat). Is there anyone out there with a PKU child who has had this problem and can share any good tips? Many thanks

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bubblagirl · 28/08/2008 19:21

bumping for you incase someone has some advise i dont but i hope he gets this sorted soon x

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r3dh3d · 28/08/2008 22:46

Presumably he is under a dietician? Other than that, there must be a PKU support group on the internet? Am hesitant to advise about bumping up the calories because I don't know enough about how this stuff is metabolised to say eg whether best to get calories from carbs or fats.

DD1 has a different metabolic disorder - not PKU. We have similar problems though with specific sugars not with protein, but we find that when you have a v restricted diet anyway, the slightest faddiness or illness means they go off their food - and suddenly it all goes base over apex. A lot of it for us is about working out what is palatable and fixing that rather than increasing the calories in stuff they won't eat anyway.

However - calorie tips: other than adding cream and butter - avocados and bananas are the highest fat fruit/veg. Obviously adding olive oil to everything, frying stuff. High fat yoghurts (if you can still buy such a thing) rather than just high sugar kids' ones. Ice cream. Another rule - don't give too much for breakfast and never give eg porridge which fills them up all day. Light breakfast, moderate lunch, fill up at teatime; give a medium portion that they will definitely eat all of and then fill up on crisps afterwards as a "reward".

For us (because the issues are with boredom and food behaviour as much as anything else) the best thing is I'm afraid high-effort: haul out every cook book you own and go through it for dishes that match your criteria and make a rule to introduce at least one new dish per week. That way you're introducing new stuff faster than it is being rejected.

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sobeda · 29/08/2008 12:11

Thank you. Does anyone know of a PKU support group in the UK?

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r3dh3d · 29/08/2008 12:24

Contact a family is (amongst other things) the UK universal database of conditions and support organisations. Here's the support page from their PKU information: www.cafamily.org.uk/medicalinformation/conditions/azlistings/p21_4.html

If their support org is like that for DD1's metabolic condition, they will be very big on diet; if there is a forum on the support group's web site they could prove v helpful.

hth.

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used2bthin · 29/08/2008 13:58

Also there is CLIMB which is for children (and thier families) living with inherited metabolic conditions. Not sure if they would be relevant for you but I've found them really useful for my DD's condition and they actually had a small sub group for DD's one within it. Worth a try anyway, I'll see if I can find thier number as they have, in the past, given me medical advice over the phone when there were things I didn't want to discuss with the smaller group.