PKU.com Community Discussion Forum Parent support Breastfeeding and PKU Reply To: Breastfeeding and PKU

#8657
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dmw19
Member

Congrats on your baby boy!!!  He is precious!!!  I just wanted to tell you that I know exactly what you are going through.  My son, Dylan, was born on Oct 5, 2009, and it was the happiest day of my life!!  I never really felt like I would be good at breastfeeding, but I decided to give it a try.  Dylan did wonderful!  Then, when he was only 4 days old, we got the dreaded phone call.  We had to take him to the clinic the following Monday and at 7 days old, he was diagnosed with classical PKU.  His levels were so high, that he had to go 3 days with just drinking Periflex.  I never thought that I would be so upset about not being able to breastfeed, but I felt like something special had been taken away from me.  I started pumping for those 3 days, but starting having problems making milk.  I was so upset and stressed and started avoid all the foods that Dylan won't be able to have, b/c I was scared that the food would have an effect on his levels if he was breastfeeding.  After 3 days, his diectician told me to start adding breast milk to his Periflex, but I made the decision to change to Similac.  I commend you for sticking to breastfeeding, b/c it is definitely hard to do, especially when you have to deal with everything else.  I can't give you much advice on breastfeeding since I stopped so earlier, but my best friend is an expert!  She breastfeed both of her children for 15 months.  They did not have PKU, but she did have to pump for them when she returned to work.  She used Dr Brown's bottle/nipples, and they worked great for her.

Well, congrats again on your son!  I am always here if you need someone to talk to.  I am definitely not an expert yet, but I am going through the same thing you are, I'm just a few months ahead of you.  I will tell you that I was a basket case for the first few weeks.  I cried everyday; I couldn't eat or sleep; and I just felt like i was getting punished.  Over the last couple months, I have really had a change of heart.  I know that there are so many worse things that Dylan could have been born with.  Also, I know that he is going to live a normal, healthy life, but he will just have to eat differently.  I am also praying that there will be a cure during his lifetime (preferably within the next few years!!!)  I feel much stronger than I did the first few weeks of his life, but I still have bad days where I start asking why and feeling like Dylan didn't deserve this, but then he laughs or smiles at me, and I forget all about it!  He is still the most precious and perfect baby and I can't even remember life before him!  He is definitely what gets me through every day!

Once again, please send me a message if you ever need to talk.  This website has made me feel so much better about Dylan's future and I know it will do the same for you!
Have a great day!

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