My beautiful 2wk old son, Justin, was just diagnosed with PKU. I’m just looking for support and any tips from anyone willing to give them. I had never heard of PKU before so this is all pretty scary for me and my husband.
First of all congrats on your baby boy!
I cannot really offer much advice from a parent’s perspective, but I am always willing to help in anyway possible. Your son will be perfectly fine if he follows his diet and drinks his formula. For the most part dealing with PKU is just about diet restrictions, but trust me there are plenty of other foods that those who have PKU can eat.
Aside from of course fruits and veggies there are some wonderful companies that make low protein foods. They make things like pastas, breads, bake goods, and I know of two companies that make imitation hot dogs, hamburgers, and eggs. If you would like to check them out, some of the company’s websites are cambrookefoods.com dietspec.com and medicalfood.com. They are all wonderful companies. Speak with your son’s specialist or dietitian because they should be able to tell you if some of these foods are covered, because some states cover the cost of formula and some foods.
Like I said before, if there is any other way I can help or any questions you have feel free to ask! I am always willing to help. nBreanna 17 CPKU
I’m totally freaked out nFound out today that my 10 day old neice – Alyna has PKU, diagnosed on her newborn screening. Reading some other messages it sounds like there is further confirmation testing to be done – what is that about?
Right now my sister has had to switch from breast feeding to a formula from the hospital – but she may be able to breast feed again later if levels come down. nDoes this sound likely??
I’ve also read about ‘transient PKU’ nWhat is that – it sounds like something you only have for a while but everything else I read refers to it being lifetime.
Any and all support appreciated
Hey There, nPKU is not that scarey.It’s a special diet very simular of a vegitarian. nThere are different types of PKU.As for myself i am borderline PKU.My body breaks down some protein,but Drs. don’t how much or why. nKnowledge is power. nOnce you have been diagnosed PKU you have it for your whole life. nThere is no cure.(At least not yet).
Its okay.I know it sounds scarey when you first hear that your child has PKU.
The formula he/she is on will be there main source of food intake. nThen you get to go into veggies,and fruit.
Now depending on the type,and how well your child responds to the supplement he/she maybe allowed to eat bread or small amt of pasta or rice. nJust take 1 step at a time. nWe are all here for you,and if you have any questions don’t hesitate to ask. nThats what iam here for.
With proper treatment your niece will be fine. Alyna will need to follow a special low protein diet, drink the formula that the hospital gave your sister, and she will need to do regular blood tests.
Your sister can definitely continue breastfeeding her daughter. Seventeen years ago when I was born my mother was told she could not breastfeed me, but today many children with PKU are breastfed and doing great today! I have two younger sisters who are ten years old and eight months and they both have PKU. My mother breastfed both of them and they are doing great today. My eight month sister is actually beginning to talk!!
As for how long your niece will have PKU, it is a life long disorder. She will need to remain on the diet for life.
My personal experience with PKU has never been hard. My parents have always remained positive about my PKU and trust me their positive attitudes have rubbed off on me! My thinking is that life could be worse. Despite the fact that I have PKU I am happy, healthy, and fully functional. In August I will be attending college. I will be studying Nursing and Pre-med. When someone is born with other disorders such as down syndromes, they are not given the option of following a diet and living a completely normal life.
For the most part having PKU is just about making diet modifications. If you, your sister, and your family treat PKU as a part of life as Alyna grows up that will most likely be how she thinks of it. I know right now PKU does not seem like ‘just a part of life,’ but as time goes on dealing with PKU will become second nature.
WOW – thank you for all these encouraging words and in less than a day!! nYou are amazing.
You are right, as we learn more we gain power and knowledge, with that we can deal with it. nAlso your comment about attitude – is well taken, I think we are all at the shell shocked stage right now.
It’s especially hard as I’m in Canada and my sister is in England, so I cant be there to support her. Let alone see Alyna.
Thank you both again.
I will keep coming back and hopefully you wont mind helping me with all my questions! LOL
That must be hard with your sister so far away. My sister moved on campus two years ago (15 minutes away) and that was hard for me LOL!
Feel free to ask any questions you have. I am always more then happy to help.
Hi ruth, nWere all here to help.Feel free to ask anything.
Take care, nTracie-PKU
PS nWere All in this together!!!!
Hello, my friend highly recommends to have my nephew tested for PKU. Never heard of it, but started reading about it. He’s 10. Where do we start so he can be tested? Health District of Hawaii?
I don’t mean to be nosy, but can I ask why your friend thinks your nephew might have PKU?
PKU is detected through the Newborn Screening. It is a heel prick and few drops of blood that is taken shortly after birth. In your nephew’s case it would probably be a finger poke and a few drops of blood on filter paper or a vein draw. You should probably begin by asking his family doctor. He or she should know what the Newborn Screening is, but if not then I am not sure where you would go next. A local Hospital maybe?
Good news Levels are cominmg down, started at 1900 and now in the 500’s nEveryone beginning to cope better
If there are any web sites you ercommend I’m open to ideas. You never know what to rely on
Ruth I’m so glad your niece’s levels are coming down! If you would like you can go to this website and join the PKU listserv (an emailing group) http://www.listserv.emory.edu/archives/pku-support-l.html
My son, Connor was diagnosed with PKU 5 days after his birth on July 22, 2008. He joined 3 sisters Emma – 8, Abby – 6 and Grace – 23 months. None of his sisters have PKU. No one in either my husband or my family have PKU. This was quite shocking to us! After the initial- feeling sorry for myself and Connor I got over it and dove into the world of PKU. Our Metabolic doctor and Dietician are absoltulely wonderful. They have become members of the family even though they are over two hours away. I was able to breastfeed just like I did with the girls and just supplemented him with his Phenex 1. He is growing and is the picture of health at 23lbs. 10oz. at 8 1/2 months old and meeting all developmental milestones right on or ahead of schedule. Connor’s levels remain in the normal range even with sickness, teething, and the introduction of solid foods. I am looking for advice on how to start to prepare meals for the family that Connor can eat too as we approach his first birthday. (The girls don’t like vegetables very much.) Any ideas?