About Me

Hertfordshire, UK
I am a very lucky Mum to two beautiful daughters, known here as Moomin and Gremlin. My second gorgeous girl, Gremlin (above), has PKU (Phenylketonuria) and has introduced us to a whole new world! This blog is intended to record our journey with regards it, particularly focusing on food and eating.

Wednesday, 30 June 2010

BOGOF

We were back at GOSH today for our Stage 3 weaning chat, but also got Stage 4 thrown in for good measure! BOGOF if you like!

I am going to blow my own trumpet, which is not like me but I am very very happy, as the reason for the BOGOF is due to how well Gremlin has done thus far. Much of today's chat should have been about protein free finger food, which (avid readers) you will already know we have been doing all by ourselves for quite some time! We're even onto protein providing ones, so the dieticians were really pleased. They had a live demonstration as we ran out of time to eat lunch before our appointment, so Gremlin noshed down some gel, lasagne (2 exchanges), veg curry (protein free) and cucumber sticks whilst we were there, with no fuss whatsoever. She really is a superstar.

I've now got more protein providing foods to add to our range, and prescriptions ready to hand in to the doctor's tomorrow to allow me access to bread, pasta, desserts and cake mix for Gremlin. Woohoo. I'm really excited to be able to offer her some more variety. Importantly (after today's epic journey involving cancelled and diverted trains and crazy heat) we do not have to go back to GOSH now until she is 1.


:-)


p.s I am hugely relieved that Jacky confirmed that chopped tomatoes and passata are 'free', as my new PKUrecipes friend suggested, despite saying 1g per 100g. Some items are measured by the NSPKU on the actual phenylalanine levels, rather than just protein. So the tinned tomatoes protein is ok protein for Gremlin. Easy life!

Saturday, 26 June 2010

A typical day's food - 8 months

Just to share, for the record.

Gremlin is eating well and enjoying her food again. I have overcome the stalemate of spoon feeding hell by offering finger foods at every meal. This enables me to get the enforced spoons of gel and protein in before letting her play with the protein free bits and bobs. She seems to know what's coming when and always expects her gel and protein first, as that is the way we always do it based on GOSH advice.

First thing - 100ish mls PKU Start formula

Breakfast- 1 sachet gel (spoon fed)
28g Farleys Rusks mixed with PKU Start milk (spoon fed) - 2 EXCHANGES

She usually has a long nap in the morning so rarely has a snack or drink at this time.

Lunch- 1 sachet gel (spoon fed)
54g Hipp Organic Vegetable Lasagne (spoon fed) - 2 EXCHANGES
Home made ratatouile, sweet potato and parsnip (spoon fed if allowed)
Cucumber sticks (finger food)
Nectarine (finger food) and strawberries (finger food)

Snack- 7g = 3 Organix Rice Cakes (finger food)- 0.5 EXCHANGE

Dinner- 1 sachet gel (spoon fed)
Home made tomato, carrot and basil with 18g petit pois (spoon fed)- 1 EXCHANGE
Additional plain tomato, carrot and basil until satisfied!
Sweet Potato wedges (finger food)
Organix fruit pot (spoon fed if allowed)
Plum, pear or kiwi (finger food)

Bedtime- 90mls regular formula (1 EXCHANGE) followed by up to 150ish mls PKU Start formula

And relax..........!

Friday, 25 June 2010

Recipes

It's 283. Which is perfect. So there! Still, lesson learned.

I have made 2 other protein free recipes lately which have been very well received.

Ratatouile:
1 aubergine, 2 courgettes, 2tbsp olive oil, 1 large onion, 1 clove garlic, 1/2 green pepper, 1/2 red pepper, 7 tomatoes (skinned, deseeded and chopped), 4floz veg stock, 1tbsp fresh basil.

Salt sweat sliced aubergine if you fancy it (I did but regretted it as the dish tasted too salty afterwards). Chop aubergines, courgettes, onion, garlic and peppers. Heat oil , add onion and fry gently until softened but not brown. Add garlic, aubergine, courgettes and peppers, cover and cook gently for about 30 mins or until tender. Finally, add the tomatoes, veg stock and basil and simmer, uncovered for another 30 mins. Mash/whizz up a bit as required.

Very, Very, Very Mild Butternut Squash Thai Green Curry:

There is some protein content in the ready made curry sauce jar, but so little is used that it is effectively 'free'.

10floz veg stock, 1 butternut squash (peeled, deseeded and cubed), teeny tiny dash from jar of thai green curry sauce (WATCH PROTEIN CONTENT), 4oz cherry tomatoes (halved), 2oz green beans, 3 shallots or half an onion (chopped), garlic clove (thinly sliced), teeny tiny bit of coriander (chopped)

Add veg stock and teeny tiny dash of curry sauce. Bring to the boil and simmer for 5 minutes. Add butternut squash, green beans, onions and garlic and simmer for 30 mins. Add tomatoes and cook for a further 5 mins. Add teeny tiny bit of coriander. Mash/whizz up as required. Amount of coriander can be increased as they get older.

I will share the Butternut Squash and Red Pepper Stew recipe but need to work out how many caraway seeds I can add but still enable it to be 'free' first.

Thursday, 24 June 2010

A word of warning

I am an idiot. I found a great recipe online - Butternut Squash and Red Pepper Stew - all seemingly protein free. Having read in my GOSH blurb that all herbs were protein-free (and stupidly jumping to conclusions about all spices, flavourings etc) I gaily added some caraway seeds, which had no nutritional information on their jar. The stew was delicious and Gremlin really enjoyed it. But something made me think about it later. I checked online and caraway seeds contain 19.77g of protein per 100g. That is quite high. I worked out that I added 3 exchanges worth of caraway seeds to the whole dish. It did make dinner for me, Daddymin, Grandmamin and Moomin aswell as Gremlin, so she probably didn't even have half an exchange-worth by the time we'd eaten our bits but I am so very cross at myself. I have certainly learnt my lesson. We await her blood test result to see if it has had too detrimental an effect on her phenylalanine levels.

Wednesday, 23 June 2010

Da Dum Da Dum


0.01g of protein per wafer!!!!!!!

Tuesday, 22 June 2010

Oooooooooh!!

That extra half an exchange has inspired me. Whilst Moomin is at pre-school, Gremlin and I peruse the baby snack aisle in the supermarket. I am beyond excited when I discover that 2 staples of Moomin's snack options at a similar age can easily be half an exchange. Approximately 6 Organix Carrot Sticks or 3 Organix Apple Rice Cakes and bob's your uncle.

Gremlin LOVED the rice cakes as you can see:



Monday, 21 June 2010

More protein!

An exciting day.

Gremlin's blood test result has come back and it is the third one in a row which is at the low end of normal. Today Jackie, a GOSH dietician, suggested that I give her and extra half exchange (half gram of protein). This means she will, in total, have 6 and a half exchanges (6.5g protein) per day. It may not sound like much, and it isn't really, but it just gives us a bit more protein to play with and eases the strictness of her diet ever so slightly.

Currently 2 of her exchanges are still comprised of regular 90ml formula feeds. Jackie also suggested we drop one of these. So from tomorrow she will have 5 and a half exchanges provided by food.

We also got the date for her Stage 3 weaning chat for next week. This will mean we can start to get in prescription food for her and I will be able to give her things like bread. A lot of her contemporaries are eating toast and sandwiches and she looks so longingly at my breakfast that I am relieved to get to this point. Bread is such a great finger food for an independent little lady who wants to feed herself!

Thursday, 17 June 2010

PKU Chilli! Yippeeeee!

Lots to report on tonight!

Firstly, inspired by all the other PKU babies we know (2 in total!) who take it plain, Gremlin had 2 sachets of gel today without our trusty Nesquik. When we last tried it plain 2 months ago, she wasn't having any of it. Today though she took it with no qualms whatsoever. What has changed? No idea, perhaps Michelle the dieticians theory about taste buds changing holds up. Anyway, it makes life much easier and is one less thing to have to remember when we are out and about.

Secondly, Gremlin ate her first proper PKU meal type exchange. I chanced upon a tremendous website: http://www.pkurecipes.com/ and thought I would give the Chilli Sin Carne a go. I love chilli, so was really pleased to find I could make a version for Gremlin. I calmed down the heat for her and just used paprika and oregano, as well as only 50g of chopped tomatoes (which worked out to 0.5g of protein as I do not still understand why tomatoes are protein free fresh but appear to have 1.0g protein per 100g when tinned or in passata) then bulked up with more water. It smelled great. Then I think I did something a bit silly and chickened out of adding rice for protein (fearing 45g (1 exchange) would be too much volume for her) and instead added 25g spinach (1 exchange) and 18g petit pois (1 exchange) both of which I happened to have in my freezer. I whizzed it up a bit but kept in lots of lumps. It still smelled great but didn't really resemble chilli anymore! I weighed it (128g) and halved it to make it 2 lots of 1 exchange. Gremlin wolfed it down! In fact it was a big hit two days in a row! I will make it again next week and be brave and use rice. Thank you so much to PKU Recipes for fantastic inspiration!

Tuesday, 15 June 2010


Lots of roast veg offered this evening following her gel and protein (32g Ella's lovely lamb):

Sweet Potato :-)
Red Pepper :-)
Courgette :-/


Steamed broccoli (one portion per day is 'free') was not a hit. At all. :-(

The highlight of the meal though was steamed asparagus! She loved it!

Saturday, 12 June 2010

Carry on PKUing

We've been on holiday! A week in the Isle of Wight and it's been great. Aside from the mass stash of PKU gel sachets and big box of PKU Start milk it really hasn't been difficult at all. We even managed to do a blood test, pop it in the post and get a result back on the phone the very next afternoon. This is often quicker than when Daddymin takes one in to GOSH in person!

Some photos to sum up the holiday:

Hipp baby









PKU on the beach











Gnawing on a nectarine in a very posh restaurant











Happy Days :-)

Wednesday, 2 June 2010

We are finally lurgy free and I'm back on the weaning bandwagon. I've been researching Vegetarian and Vegan weaning for ideas and am continually amazed by how much protein is in a regular diet. There are lentils and potatoes all over the place! I've had some absolutely brilliant ideas from my lovely, lovely veggie friend in Slovakia who has been forced to become the 'Queen of Unusual Vegetable Cooking' by virtue of the fact that Slovakia really isn't very vegetarian friendly. I've even bought a Kohl Rabi from a local Turkish supermarket based on her advice! (Look it up if you don't know what it is!).

We ate out at lunchtime and, for the first time, I was asked by someone why I was weighing Gremlin's food. She wondered if it was a new fad. I explained what I was doing and she was lovely and very interested. I'm still a bit self conscious when we're out and about as I can feel people watching while I sort out Gremlin's gel and food but that's my problem and we have to make it as normal as possible for her.

This is Gremlin tonight after 2 exchanges of Vegetable Lasagne by Hipp Organic, followed by a free for all on a little bit of steamed cauliflower (contains a small amount of protein so she can only have one portion per day as 'free'), streamed carrot sticks then a strawberry and some mango to gnaw on. Not a huge amount went in but she loved it!