Treatment

It's all diet.

So, for a teeny tiny baby it was controlling her milk intake. It is perfectly possible to breastfeed a PKU baby (supplemented by PKU special formula) but as we were already having huge weight loss issues (over 15% of bodyweight despite very best efforts) we changed to bottle feeding as I felt at the time I just couldn't cope with the weight loss and the PKU.

She would have to have 2 bottles per feed. This is because she needed to have a little phenylalanine (or 'phe' to those in the know) to enable her to grow and develop but not too much that w0uld cause her damage. So the first bottle contained a specified amount of regular formula (with it's bit of 'phe'), to be followed by a second bottle with a special formula which had had the phe removed. She could take as much of this as she wanted. The amounts would be specified by GOSH dieticians and based on the result of her blood tests to check her phe levels. We would have to perform heel prick tests on her twice a week ourselves and send them in the the lab for analysis. If her levels went too high, the regular formula would reduce. If they dropped too much, the regular formula would increase.

That sounded manageable. Just.