My husband (who has PKU - phenylketonuria) is going back on diet after being off for five years. Unfortunately I have given away all my PKU recipes in the meantime. So I need to start gathering some tried and trusted recipes again. TIA
Thanks, I know there are a lot out there. However, I know from past experience that some of them don't work that well. That's where the 'tried and trusted' bit comes in :)
carlos57,
Feb 8, 8:23pm
Bumping for the morning crowd.
books4nz,
Feb 9, 7:07am
Bumping for you for someone to help.
gypsy4u40,
Feb 9, 10:46pm
Good luck to him, my daughter also has PKU (and lives in Palmerston North also). Has he got a prescription for the special flour, pasta, drink etc Hopefully he loves his veggies lol
carlos57,
Feb 9, 11:50pm
Thanks :) He does indeed love his vegies! There's no chance to be fussy when you're on such a limited diet is there! Yes, we're just waiting for the flour, pasta and drink to arrive at the pharmacy. It's quite hard going back to the PKU mindset after being on a 'normal' diet for so long. A friend whose son has PKU has given us all her recipes to go through, so that is a great help. Has your daughter been in Palmerston North for long! Just wondering if we might have met her at some stage.
gypsy4u40,
Feb 10, 4:55am
My daughter has been living in Palmy for about 2-3yrs, but we used to go to PKU Picnic's in Palmy when she was younger (she's now 26yrs old) and it was really great meeting and chatting to other families. How many exchanges is your husband allowed! daughter is allowed 5 exchanges but I think she cheats and eats more protein than she is allowed lol When she was growing up, my best friend was the Bread Maker, I was always making her bread!
carlos57,
Feb 10, 5:45am
We used to go to some of the get-togethers so chances are we saw each other years ago. My husband is 41. He's probably going to be on 20 exchanges, so will have a bit more freedom than your daughter. 5 must be hard! Does she still do blood tests regularly! I had put our breadmaker in our back storage room - think I'll have to haul it out. Just hoping I can find a good recipe, because I know the breadmakers are all slightly different. I think there's a bread recipe book in the box of recipes we've been given.
gypsy4u40,
Feb 10, 11:03pm
Yes she does blood tests when she remembers! 20 exchanges sounds great & yes 5 was hard until I met someone at the picnic who's young son was only allowed 1! I know when she's off the diet as she has low concentration levels, throws hissy fits, gets headaches and starts slurring her words, in fact she becames another person! May I ask, why is your husband going back on the diet and how long has been off it!
carlos57,
Feb 11, 1:40am
He has been off for five years. He gets very tired (and I say grumpy!), and can be a bit forgetful. It's hard to know if it's the hours he works (shiftwork) or the PKU. I've always had the feeling that he has been a bit of a guinea pig since he's one of the older treated PKUs. His mum tells me that he was the first successfully treated baby in the Auckland region. Maybe he should never have come off the diet, but he did it under medical advice. Most of what I read now suggests that it should be diet for life. If it's going to keep his brain in good order, the diet is definitely worth it!
gypsy4u40,
Feb 11, 10:08pm
My daughter gets very tired when off the diet, at the moment she is working and studing so needs to follow the diet as she needs the concentration, energy & *brain power* lol . We got told when she was born, that she'd be on the diet until the brain matured around 10yrs of age but later got told that it was for life (much to her disgust lol). I think it was abit hit & miss with my daughter as she was the only child in Wanganui & her specialist & dietician had never come across it before! The worse thing about this diet was her *special* drink she had to have every day.god it was foul back then but apparently they're improved the flavor so hopefully your hubby enjoys his *special* drink lol
carlos57,
Feb 11, 10:39pm
Yeah, I remember the smell of that lovely drink! If my husband tried to come near me when he'd had it I'd run for cover! I think the new one is an improvement. I thought that the PKU diet was officially starting today, but I noticed that there was ham missing from the fridge this morning! My husband was told much the same thing about coming off diet - they always seemed to move the age up just before he reached it. I hope your daughter's studies go well :)
gypsy4u40,
Feb 12, 7:50pm
Being on the diet most of her life, my daughter doesn't like meat, fish eggs etc thank god. Let me know how your hubby goes on the diet :)
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