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 21 April 2010

Adjusting the milk and starting the gel

Gremlin has dinner 3 days in a row before we start to see an effect. She has more carrots (hmmm... still not sure) and parsnips (ok!) in this time. On the fourth day she takes much, much less of her second bottle, the PKU Start (the one with the phe removed but containing lots of other essential nutrients that she needs), than she has since she was a newborn.

On Day 5 she has lunch (a special rusk mixed with warm PKU Start- yum) and dinner (sweet potato and parsnip- ok) and drops even more of the second bottle throughout the day. This continues and by Day 7 I am worrying. I phone GOSH and they tell me I need to get her to take her gel, as this will eventually replace the PKU Start milk and provide her with everything she needs minus the phe.

I need to aim to get 1 -2 sachets into her each day. We've been given 'unflavoured' sachets as the flavoured ones are not licensed for infants under 12 months. To her eternal credit Gremlin gives the unflavoured unflavoured sachet a go. Maybe 2 spoonfuls go in. After that she pulls a face which I now know to mean "Yuck and No". I try the unflavoured unflavoured gel and pull the same face. It is almost peppery and very unpleasant. We try to disguise it the next day in fruit puree. The fruit puree flavoured unflavoured gel is more successful but not much. I phone GOSH again and am told about a great secret. Nesquik. I can flavour the unflavoured gel with banana or strawberry nesquik! Immediate success! The nesquik flavoured unflavoured gel is a real hit and I worry a little less for a while.

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