Saturday, December 12, 2009

Nursing a Child With PKU



I thought I would quickly share my thoughts on this topic since I hear all sorts of different ideas on the subject.

First of all, This ---->
is Audrey! "Hi, Audrey!" She is now 3 months old and is successfully nursing and taking her medical formula (Phenex-1). She is staying right in the middle of the range and growing and developing right on schedule.

I made the decision to nurse her, and it is very important to me. I was lucky that her tolerance allows me to do this (she is not hyper phe) and my clinic is supportive. I nursed my son Owen for 10 1/2 months till his clinic asked me to stop. I did it hoping we would figure out why he wasn't growing on a standard curve... I regret that decision but made the best one I could with the information I had at that time. His growth had nothing to do with nursing.

My clinic has told me that most Moms don't nurse as long as I did with their PKUers. I was a bit surprised by this statement and think some clinics do not want the added hassle of a breastfeeding variable. Unlike other foods, breast milk can't be measured and accounted for as easily. Every week is a little game... how much did Audrey nurse? And was her medical formula enough for that day? As the numbers fluctuate up and down (nothing drastic, though) our clinic has to adjust and readjust her therapy plan. Luckily we have found our groove.

I nurse as an investment in my daughter. There are some times I wish I could have nursed Owen longer... we had a hard time breaking that habbit and just a few short months later he became really sick. I wonder if nursing through his illness would have helped shorten his 3+ month ordeal. I stick with it with the help of my trusty Medela pump, to keep me producing, and good milk storage containers. I use glass and Medela BPA free plastics.

My best advice for new parents would be to have a discussion with your clinic right away. I started off the first visit by stating (not asking!) that I would be trying to nurse Audrey longer. We were up front about our wishes and hopefully things will work out for us. I know it will be more difficult to juggle once she is eating solids, but I know it can be done. Please work with your clinic if you want to nurse and don't be afraid to advocate for yourself and your new baby.

74 comments:

Matt & Heidi said...

I nursed our PKU'er (also named Owen) until he was 15 months. My clinic encouraged me to nurse as long as he would do it. My dietician said breast milk is very important - even if PKU'er cannot tolerate as much as a baby without.

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Julie said...

I am nursing my 8 1/2 month old, Noah, and he also has PKU. In the beginning I thought I wasn't going to be able to do this but I was so happy to find out that our clinic would work with me. I have to admit that it has been hard at times with the guessing and trying to get the right amounts of protein without getting too much but it has been SO worth it! Several times I have almost quit but my dietitian always encouraged me to continue as long as I can.

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