My 2 wk. old daughter was diagnosed this week with PKU and I am pretty much totally freaking out. I’m so scared that I will mess up and not do something right, and it’s so scary to know that her future is in my hands. It’s all very overwhelming right now, especially since I’m new and not educated in this area at all. I have been reading tons of posts and just wanted to say thanks to all of you out there that try to reassure us newcomers. nKristi
I think it is normal to freak out when you first find out that your child who looks perfect has pku, i know i did. my son has classical pku and is now 6years old.we have our good days and our bad days with his diet and it frustrates me when he gets sick and his levels go high because there is nothing i can do about that.some days i feel like giving up but then i think about what he can do, and i know that it is because of my persistance with his diet and formula he is doing well at school, plays foot ball and races motorbikes. i know it is scary to think that you hold your childs future in your hands but try to take one day at a time, thats what i do. I am sure that your girl is going to be just fine
question) what type of pku does she have?
question) what country do you live in?
question) is she your first child?
Thanks for your message. To answer your questions, we live in the US (in Florida), she is my 2nd child (I have a 2 yr. old daughter), and she has classic PKU. I found out that the special formula that she will be on for life is free in the state of Florida. That’s like the only good news I’ve had this week! I don’t know about any of the special foods though, but I guess we’ll cross that bridge when we get there. People (meaning friends and relatives) keep asking me all kinds of questions that I don’t know yet and it’s kind of frustrating. I’m hoping to learn as much as possible so that I won’t be so scared about everything. I don’t even really know what she will be able to eat when she’s older other than fruits and vegetables. I just know that there’s a long list of stuff that she CAN’T have. I know I shouldn’t even worry about that yet and should just take a deep breath and take it one day at a time. It’s just hard to relax right now, ya know?
Hi Kristi nit is frustrating when people ask lots of questions that you dont know the answer to, but it is good that your family and friends are interested in pku. the questions will slow down eventually but they never seem to stop. Everyone gets their children tested foor it but not many people seem to know anything about it.
The US seems to have a lot more variety of low protein foods than any other country, and they are supposed to be yummy. i havnt tried them yet because they are so exspensive for us to inport but I THINK for you they are free. nKEISHA
I can only imagine how worried you might be. Out of me and the six of my siblings only me and my little sister (Erica who is 8) have PKU. I will be 16 in June so my mother and my family have been working with PKU for along time now. I wish I could tell both of you that the questions will stop…but they won’t. To this day I still do get asked many questions about my PKU by my friends but I know that is only because they are interested. My mother does get questions about my sister every once in awhile from people like my Grandpa and my moms sister because they don’t have to deal with PKU every single day so they aren’t pros at it like me .
As for the diet, No foods would be things like: Meat, Dairy products, most Grain products (like breads and pastas) with acceptions for some cereals, beans, nuts, things high in protein, ect. What me and my sister usually eat are things like fruits, veggies, limited amounts of junk foods (things like chips and little debbie snack cakes…but they have to be measured out and everything). Then we eat alot of low protein foods. Oh and Keisha, weither or not low protein foods are paid for depends where you live. I know here in Wisconsin me and my sister get our formula paid for and then some pastas made by dietary specialties but things from like Cambrooke and Maddy’s are not paid for and they come out of the pocket.
Your daughter will be just fine Kristi and the truth is with every child, no matter if they have a genetic disorder or not, their future is always in their parents hands. To this day I’m an A student, I dance tap, jazz, ballet and pointe (or toe), I help teach 2 younger childrens dance classes, I’ll be tutoring children at my old elemantry, I plan to go to Marquette college and eventually work in Genetics with people with Genetic disorders as a medical Geneticist and I’m going to a Maternal PKU camp this summer. What I’m trying to get at is that I am just like every other teen accept I eat different, drink my formula and check my blood and that goes for my sister aswell. And I won’t lie, there have been some times when my blood levels would not be where they need to be and until recently I would not drink my formula but I am doing fine!
I’m actually really happy because since January I have been drinking all of my formula (plus sometimes more!) and kept my levels between 2-6mg/dl like they are supposed to be.
Just try to stay calm, I know easier said then done. Anyway, I should be heading out because I actually have to leave right now to go to dance classes. nBreanna n15 w/CPKU
sorry i stand corrected its still good that you get some pasta free
Just take a deep breath. My youngest daughter was diagnosed with CPKU in March, she was just 8 days old. I like you and so many others, didn’t know what PKU was or what it did. Freaking out is perfectly normal. You have a right. I think we all go through that. My daughter is now 4 months ond and doing wonderfully. All I can say from experience is just take one day at a time, no one expects more than that. My husband and I came to realize in time that it could be so much worse than PKU. We are so fortunate that’s all it is. That’s something we can control and she’ll be fine. I know I’m new at this too, but having a positive attitude is contagious. If we are down and stay down, how would that make her feel as she gets older? We are just now getting to start some “real” food besides her formula. It scares me to death, but I know I can and have to do this for her. Just as I know, you’ll do this for your child as well.
Lynette nMom of Ella w/ CPKU
I just wanted to say you have a great additude! That is basically how I have thought of PKU my whole life, mainly because that is what my mothers thoughts are. Atleast with PKU it is something that is still going to allow me to function in society and to grow up and become what I want to.
Good luck with starting your little one on foods! The only advice I have is become friends with measuring tools lol. nBreanna n16 w/CPKU
Thank you for your kind note. We tried applesauce for the first time last night. She LOVED it! I think she might have actually gotten more in her than on her…lol.
I’m so glad your mom is so supportative. Like I said I know it will be a challange, but I know I can do this and knowing that there are kids out there like you with PKU going and doing things you want to really helps!
Best wishes in all your adventures
Lynette nMom of Ella w/CPKU
Thanks to you all for your words of wisdom. Ashley is two months old now and doing great! I’m already much more comfortable with everything (although I’m sure that will be a different story when we start solids!). I am doing a lot better mentally and have been educating myself so that it’s not so scary.
Sorry it took so long for me to say anything. I have a 1 years onld daughter with CPKU. nWhen i found oiut i was just like you were. I even cried, and it was my phone that the doctor called us on, so i had to try and explain it to the father and i barly could, bc i could not stop crying. But we took our first trip to the childrens hospital to meet with the PKU specialists and i calmed down they are very caring and always there to talk to you. They let me know that it was normal to feel how i felt and crying is a way that alot of people handle it and not to feel bad, we didnt do anything wrong.
I also had tons of people asking questions, but i had family who looked up stuff them selves, and told me things. My aunt freaked out, she went around saying everyone with it had blonde hair blue eyes and alot of them dont live to the age 3, which go tme very mad bc THATS NOT TRUE but she thought she knew.
I still feel that i will mess up, and im scared i already did mess up, even though i know i havent. nShe is my first child, and im very thankdful that she has me and her daddy, i glad i have him he is so smart and knows everything, if i dont understand what people tell me, he will explain it to me so i can understand. nThe part about worry about what she can eat later, i took it as it came i didnt want too much info right away, so i didnt forget it , we wanted to take it one day at a time b4 solids i only wanted to know about that stage when she got to cereals i only wanted to know that and then baby foods ect. Now i have to know the rest bc now she has to statr on table foods. nGood luck with everything!! n~Sarah~ Braelyn’s mom
Sarah, nYep your aunt was defintally wrong. Blonde hair and blue eyes is more common in PKU, but not all PKU people have it (I’m living proof since my eyes are brown and my hair is more of a light brown). And not living to 3? Definatally NOT true! Otherwise I wouldn’t be here
I think your right, everybody dealing with this diet should jsut take it one step at a time. If you want more info, then that’s great go for it, but don’t take it more then you can handle. Everything will work out in the end. I’m sure my mom wasn’t 100% perfect with my diet all of the time because nobody is perfect at anything, but I still turned out fine! And so is my sister who is 8 and also has PKU (for those of you who don’t know I have 5 others w/o PKU). nBreanna n16 CPKU
Ashley is now 6 months old and we just started cereal this past week (which she’s doing very well with). I have an hour-long appt. with the dietician at her next appointment so she can teach me how to count Phe. We’re doing okay now, just still concerned about what she’ll eat when she’s older. I have a toddler also and am learning how different her appetite and pickiness can be from day to day. That makes me nervous for when Ashley is that age, trying to find stuff she likes, making sure she gets everything she’s supposed to have each day, etc. Here’s another thing that concerns me: She’s so chunky! I wonder if that’s normal or maybe just hereditary (my nickname was “beachball” when I was her age, but I thinned out when I started walking so I hope she will too!). Just wondered if that possibly has anything to do with the PKU b/c I’ve read some posts about the formula making some people overweight. Any thoughts? It’s almost impossible for the nurse to find her veins right now to draw blood…makes for very torturous appointments .
Hi there! I can completely understand your concerns with starting solids. My son is 6 months old and we have an appointment with the dietican next week. We plan on starting solids after that appointment so I am pretty nervous about that. I really like our dietican and I know that she will help me but I still worry that I will mess something up. I also have a four year old(non pku) and a two year old (non pku)so I am also worried about him going through a picky eating stage, but I guess I will just deal with it when we get there. My son is also a really big baby, but so were my other kids so I wouldn’t worry too much about your child being overweight. I am sure that your dietican would tell you if she was concerned, besides all of the rolls of fat make really cute babies. nMarie
Hey I just wanted to wish you luck with starting solids! I don’t really think I have much advice with this, but try to take it one day at a time. I won’t say that you won’t ever make mistakes, but everybody does. It’ll probably happen but don’t kick yourself in the butt for it. I’m sure when I was a baby my mom had the same worries as you both have, but she got through it and I’m sure you will too! Especially if you have good support from your dietitians and PKU staff.
For the weight issue, I’m not so sure if that is a PKU thing. Then again I could be wrong. All I know is my eight-year-old sister was average weight and height when she was a baby, she short now but that is because she stopped growing for awhile. When I was a baby I was very tiny, when I was six I weighed around 33lbs and I was very short, so dietition told my mom to count calories so I would gain weight. Like with every child, kids are going to grow at different speeds, weights, heights etc. nBre 16 CPKU