My name is Sarah and i just had my child in July and i found out about it and i was scared i cried and was sad i want my first child to be healthy since i am only 20 years old i knew that it would be hard to take care of a child, but now it keeps piling on, i have the dad with me but i still am scared that i will do something wrong.Is there anything that can help me adjust to this?
Dear first time mom: You will do fine. You will have a nutritionist who will see you and you will be testing the child’s numbers weekly at first. Just keeping this under control is your first goal. You have lots to learn but it is not so difficult that you can’t manage it. Read all that you can here and anywhere you can. I have a sister and a grandniece with PKU. You will find this a wonderful place for support and information. Good luck and God bless. Diana
Sarah, your baby will be okay. I’m 15 and out of seven kids me and my 8 year old sister have PKU and are both healthy and happy. My mother was only about 21 when I was born (I’m the third out of me and my siblings) and if you want the honest truth if a cure for PKU were created I probably wouldn’t take it. I know that may sound crazy but I’ve never eatten meat and have never had the urge to and never will.
thank you guys for the replys i know im doing good with it bc she is down to going to get her blood taken only 2 times a week now. But im scared of when she gets older.
Well because I’m not a parent I wouldn’t beable to tell you exactly what it will be like from a parents perspective. But what I do know is my mother has said many times before she always thought it would be horribly hard but said since things were always added alittle at a time it wasn’t to hard. Like I didn’t go straight from formula to foods, she slowly added foods to my diet when I was ready for table foods. Plus it will probably help if when you start adding table foods to your daughters diet (not sure if she’s old enough for table food yet) but just don’t give her things that will add up to alot of phes (or exchanges). Because a bite of regular bread maybe few phes but when your daughter gets older she’ll have a greater appetite and she’ll go from eatting a bite of bread to 2 or 3 slices which can really add up. So just start simple with fruits and veggies and low pro foods and try to avoid things that could someday add up to alot of phes or exchanges or whatever you count food in. nBreanna
Hi Sarah, nMy name is Sarah too. My son was born in February. He is our first baby and we had never heard of PKU. I was really scared at first but everything has worked out just fine. Sometimes I still feel overwhelmed when I think about the future but you need to take it one day at a time. I used to worry about having to take blood samples at home but now it’s no big deal. Easton doesn’t even get that upset. Jason and I work together and it’s over real quick. nLet us know if you have questions or just want to talk. We can even talk about poopy diapers!
I saw on your profile that you’re in Wisconsin. BreaMarie and I are both in Wisconsin too. I’m in west-centeral Wisconsin (Alma). Where are you? There is a PKU conference in Sheboygan, WI, in February. It is at a resort. We’re excited to go.
Sarah where do you live in wisconsin? Me and my sister live in Franklin which is like around Milwaukee. And sarah (the other sarah ) Is alma near Madison? I might just be thinking about some other place. nBreanna
Sarah it will all be okay. I thought having a child with PKU was scary and my son was born 2lbs 13oz. He was the smallest born with PKU reported in the U.S. Our doctors were running around trying to figure what he would need to grow. I was very scared now my son is almost four and very healthy tall and excited about santa. The best thing you can do is educate yourself and others around you listen to your treatment team. Always remember you are your childs biggest advocate. Use your knowledge to teach others.
I live right on the border of Wisconsin and Minnesota. I actually work in Minnesota. We live about a mile from the Mississippi River (awesome fishing ).
hi i live in appleton i got the thing for the winter thing in sheboygan and we are going to go, im pretty sure, and we have to figure out our work sceduals but i know we are going to goit s nice to have people to talk to about this that you for your replies
do u have yahoo messenger or something that we can talk through this is hard bc we dont get relpies right away i think it is harder to talk this way? nSarah
Hi, my name is jennifer and I am from England. Me and my husband had our first child in september. We had a little girl called millie. When we were told she had pku it was very upsetting. We went to the childrens hospital the day after feeling very depressed. we went home feeling so much better. we have our own dietition who calls us each week to let us know her levels. So far we havent had to amend the dose of formula which is good as i am still breastfeeding. We go back to the hospital in a couple of weeks to talk about introducing solid foods (non protein to begin with) I am quite worried about this as I dont know how my daughter will take to this. Also i am concerned about her levels changing. I would love to speak to people who are going through the same as we are, Jennifer Lonergan xx
Hi Jennifer, nWelcome to our group. I found it only a month ago and it’s been encouraging to talk other new parents and people who have PKU. Please feel free to share your concerns or questions here. Congrats on the sweet baby! My little man was born last February.
Sarah (Easton’s mom)
Hi Sarah, thank you for your reply. Congratulations on the birth of your son! It is nice to be able to talk to other people who are going through the same as you are, as it is such a rare condition. Is there anything you have found difficult so far? we found getting Millie to have the analogue hard at first as it has an unpleasant smell so i cant imagine it tastes very nice!