Viewing 15 posts - 1 through 15 (of 24 total)
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  • #4664
    Avatar of Helen
    HenryQQ
    Member

    Hello everyone, I am a mum of a 6 weeks baby, and my son was just confirmed to be a PKU. While we were very sad, I’ve serfed online to find out as much information about PKU as I can – there are very limited info in China about PKU. It’s so nice to see many positive information here that a PKU baby could be a normal person in future. It would be great if I can get some valuable experience from mums who also have PKU babies. I’m also tried very hard to see where I can buy PKU infant formula for my baby but I found that it can only happen with a doctor’s prescription in US. As we are not in US, and we don’t get free formula here, dose someone know how I can buy some formula for my baby? And where to buy?
    Many thanks in advance, wish you all are well!
    Helen

    #4665
    Avatar of Breanna
    BreaMarie91
    Member

    Hi Helen! nMy name’s Breanna, I’m 15 and have Classical PKU aswell (one of the more stricter cases). I’m the third child out of 7 so believe me I have alot of support from my siblings (my 8 year old sister has PKU aswell). I’m not another parent but since I’ve been living with PKU all my life I thought I could give you alittle help. If you need to get formula for your son you might want to call your sons peditrician, they might know. Or if your son is seeing a regular PKU doctor or dietian you may want to check with them. I’m not really sure what more you could do because here I just get my formula from a the childrens hospital I go to.
    Also just alittle positive outlook, you son will be fine. I’m happy and healthier then ever! I get really good grades in school and I have dance classes like 5 days a week (we’re performing the nutcracker soon which I’m excited about). Also I’ve already have my heart set on a career for when I grow up. I want to get a degree in nursing, then become a peditriacian and finally specialize in genetic disorders (mainly PKU!). So in another words all I’m saying is if your son follows a low protein diet and avoids at all costs things like meat, dairy and things with lots of protein (or phes) he’ll be just fine. He’ll just be a child with a special diet!
    Hope that helped! nBreanna n15 w/CPKU

    #4675

    please email me and i will give you my number to my docter.

    #4676
    Avatar of Helen
    HenryQQ
    Member

    Hi Breanna,
    Thanks for your reply! I’ve seen quite some replies you did to other people, you are a great girl! Your words give me more confidence on my son, though he is only 6+ week old, I hope that he will be healthy as you are when he is 15 years old. I’m sure you will realize your career goal when you grew up, keep up your good work.
    I’ve got a question for you though, I understand that PKU people can’t eat normal food as normal people do, except meat, normal milk etc, do you take normal rice, and also beans? In China, they said PKU can’t even eat beans or any products made from beans,is it the same in US? Thanks!
    Helen

    #4682
    Avatar of Shelly
    mcribbet
    Member

    Mum from China! Hi there, my name is Shelly and my baby girl is one year’s old. I organized a walk for the state of ohio and because of that, I have some supplier connections. We have to get your lil baby the formula he needs to stay in the normal blood range! I will in anyway that I possibly can! I look forward to hearing from you!!!!

    #4683
    Avatar of Shelly
    mcribbet
    Member

    Hi Helen, one more thing, once I get your contact information I will send you everything I can on what foods your baby can have, you are right, beans are HIGH on phe, except green beans. Rice is also kinda high, but we have suppliers here in the states that see a version of rice for people with pku. We’ll be in touch!!!! Whatever you need, just let me know, from one scared mom to another!

    #4684
    Avatar of Breanna
    BreaMarie91
    Member

    Helen, mcribbet is right, Beans are usually high in phes (accept like mcribbet said green beans). As for rice that does tend to be high in phes aswell. Luckily, they do have specially made low protein rice that you can get (which is good for me since my grandma is full philipino and we rice alot ).
    I try to keep my outlook on PKU as positive as I can, it makes life so much easier. All that PKU means for me is just eatting alittle different, the only real thing I don’t like about PKU is the blood tests I’m not really a big fan of needles n.
    Breanna

    #4695
    Avatar of Shelly
    mcribbet
    Member

    Hi Breanna! I love reading your messages, Just wanted to introduce myself, I’m Shelly (mom of a 1 year old), her Birtday is today : ) I have a 15 year old Step-son named Andrew, we call him Drew. You sound very inspirational, from us new to pku, Thank you! Keep up the inspiration!

    #4733

    happy birthday hehe heather <3

    #4741
    Avatar of Breanna
    BreaMarie91
    Member

    Your welcome, and tell your daughter late happy B-day for me. I’ve been to so many 1st birthdays in my life lol, not only because I hae 4 younger sisters but my mom used to have a daycare and we always got invited to the kids B-day parties. It was hard going to the parties because then the whole food issue kind of bothered me (my mom closed her daycare about 1 1/2 year) but the parents were always nice and tried really hard to have fruits and veggies and stuff for me and my sister. nBreanna

    #4760

    well that was nice of them

    #4795
    Avatar of Shelly
    mcribbet
    Member

    Thanks guys for the B-day wishes! I will tell Hannah when I get home : ) We had foods for her, I did a relish tray with pickles, black and green olives, a fruit tray with peaches, pineapple, strawberries and blueberries (which she loves) and a veggie tray with a vinegar and oil dipping dressing. I will always make sure that Hannah has stuff around to eat that she enjoys. She’s my good lil eater, she seems to eat almost everything and I like to cook, so I’ll be creative with what she can have! Bre, what are you looking forward to being able to eat on Thansgiving?

    #4796
    Avatar of Shelly
    mcribbet
    Member

    Thanks guys for the B-day wishes! I will tell Hannah when I get home : ) We had foods for her, I did a relish tray with pickles, black and green olives, a fruit tray with peaches, pineapple, strawberries and blueberries (which she loves) and a veggie tray with a vinegar and oil dipping dressing. I will always make sure that Hannah has stuff around to eat that she enjoys. She’s my good lil eater, she seems to eat almost everything and I like to cook, so I’ll be creative with what she can have! Bre, what are you looking forward to being able to eat on Thansgiving?

    #4798
    Avatar of Breanna
    BreaMarie91
    Member

    My mom makes sweet potatoes with marshmellows and then she makes a macoroni carrot cassorole (I think it’s listed in one of the cook books) and my grandma makes this potato dish but I’m not sure what it’s called. And then my grandma also makes me and my sister low pro pumpkin pie filling (me and my sister don’t really like the low pro pie crust).

    #4800
    Avatar of Shelly
    mcribbet
    Member

    sounds yummy….everyone have a Happy Holiday!!!!

Viewing 15 posts - 1 through 15 (of 24 total)
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