Hi, I just wanted to introduce myself to all of you. I am pretty new to the PKU world. My daughter, Lydia, is 4 months old now and we found out she has PKU when she was 8 days old. I have a 2 year old son also(non pku), and before Lydia was born I never knew what PKU was. nRight now Lydia is being tested every week at the clinic. I’m breastfeeding her and I’m glad we have a nutritionist who is supportive of that because I want her to have at least some of the benefits of breastmilk. Her levels have been varying though (nothing to extreme) probably partly because I am breastfeeding her and it is harder to know exactly how much milk she is getting. If anyone has had experience with breastfeeding a pku baby I would be interested in hearing your story. I’m not sure how long we can continue to do it, but I figure some is better than none. I look forward to learning more about PKU and helping Lydia to be healthy. nSusan
lydia. welcome to the PKU world and congrats in ur baby girl!! i just wanted to say hi and introduce myslef. my name is Amanda im 21 and live in victoria BC i have CPKU which means classical. im sorat a pku arwarness avocate. im creating the very first canadain walk a thon , i have a PKU website and i sell PKU t-thirts and writsbands. i wanted to give u the link to my website as i think you would find it useful as it has my personal story about growing up with pku and a jornal recpies etc ect aslo my mom has posted her story about everything that she went though as a young new mom to me. i think you would benifit from hearing her story or even talking to her. also i would love to talk with u further if u wanted to. the website is http://pku.bravehost.com/ hope to see u there!
Susan, I think that is great that your breastfeeding Lydia. My name is Breanna, I’m 16 and have Classical PKU. I have 5 sisters (one who has PKU) and a brother AND I’m happy to say my mom is expecting in late July/early August!! When I was born my mom was forced to stop breastfeeding me at 9 days, but when Erica (my sister who has PKU) was born my mom insisted she breastfed. Unfortnetally our dietitian at the time was not supportive of my mom’s decision at all, but Erica is now 9 and doing great. My mom breastfeed her until she was 9 months and then she had to stop because with weekly blood tests, my dietitian giving my mom a hard time, running a daycare etc it got to hard. Anyway, congrats on baby Lydia and keep doing what your doing because you sound like your doing a great job! If you ever have questions feel free to ask and I’ll answer if I can and I’m sure everybody else will be happy to help too! nBre 16 CPKU
Hi, nMy son has Pku and I breastfed him until he was 4 months old. He decided that a bottle was easier and would no longer nurse. I had to him a bottle with the PKU formula every other feeding. nAfter I was no longer nursing I found this breastfeeding supplement. I told my son’s dietian about it and she thought it was a good idea. Maybe it would be useful for you. Here is a link: http://www.medela.com/NewFiles/specialtyfdg.html#startersSNS Sarah
Hey Sarah what your talking about is actually what my mom used with Erica. She said it worked really well because then she never had to worry about Erica being to full for her formula or having phe spikes and things like that.
Hi, I have two boys both PKU. I breastfed my eldest son for 8 1/2 months and am currently breatfeeding my youngest (9 weeks) Its been harder this time as my son was diagnosed before breast feeding was established but we are getting htere.His levels have been really stable probably helped by how much we learnt first time round. Good luck and stick with it. C