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.

Monday, September 28, 2009

Welcome to the community!

I just wanted to post an update for our family. We welcomed into the world our daughter, Audrey, on August 31st. Audrey now joins her older brother Owen in the PKU community.

We received the diagnosis 2 weeks ago and are happy to report she has taken off on her medical formula and is still gaining weight steadily! I am working hard to keep nursing her...not an easy job with 2 kids, formula, logging of feedings and a pump. But, I am determined (i.e. stubborn?) to do it all.

So, please welcome a new girl to the block... our little Audrey girl.

Monday, September 21, 2009

Have you seen this?

This movie made me so much more grateful for the newborn screen. PKU may not be easy, but at least it can be treated.

Wednesday, May 27, 2009

If I may toot my own horn...

A while back, I made a video explaining PKU.  Well, there was a European organization for rare diseases that was running a video competition.  I thought I would go ahead and submit my video (even though I was a bit embarrassed to show them my goofiness).  If anything, my video was surely different- and PKU would get some attention.  

Well, guess what?

I WON!

Yep.  The article is HERE.  


Friday, February 20, 2009

72 HOUR KITS

I AM MAKING MY FAMILIES 72 HOUR KITS BECAUSE I HAVE BEEN A HUGE SLACKER. I THOUGHT THAT SOMEONE MAY HAVE POSTED ON THIS BLOG ABOUT A PKU VERSION BUT I CANT FIND IT. ANYWAY I THOUGHT I'D TRY DOING IT MYSELF BEFORE ORDERING FROM PKU PESPECTIVES. ANY ADVICE WOOD BE GREAT. WHEN I GET IT ALL PREPARED I WILL POST THE WHOLE KIT. THIS IS SO IMPORTANT FOR ALL OF US BUT ESPECIALLY BEING PREPARED WHEN OUR CHILDREN HAVE SUCH A RESTRICTIVE DIET.

ANY ADVICE FOR FOOD STORAGE WOULD BE A HUGE HELP FOR ME AND EVERYONE ELSE.

THANKS A BUNCH

CRISP FAM

Monday, February 2, 2009

Preaching the the Choir

I know, I know. We all know what PKU is. Still, I made a video explaining it a bit. If you follow me at all, you know Im a bit of a goof ball- but If you want to share the link its here:

http://www.youtube.com/watch?v=rHh0yhBYBbI


Tuesday, January 20, 2009

PKU Kid's Blogs

I want to make a sidebar of other PKUers family blogs...if you'd like yours to be listed, please leave a comment. Thanks.

Frustrated with Formula

Our son, Owen, 18months, just transitioned from a bottle to a sippy cup. Lately, he's been refusing to drink his "milk" from either. It is so frustrating. Sometimes I get to the end of the day, and he has only had 2/3 of his required formula intake, and he'll fall asleep fighting me not to drink the rest. HELP! Has anyone else had this problem? What did you do?

I asked people on the Listserv, and got a bunch of different ideas about distributing it throughout the day. What if he won't drink it at any time? Argh! Thanks for letting me vent.