Hello everyone, Well i just came across this site today so i thought i would join and get to know other people with PKU. My son is now 5 months old and has PKU. What a scare when the doctors office tell’s you your son’s PKU levels are elevated and to come in the next day. Do a search and there isn’t very many good thing to read about when you don’t know much about it. I now know some things and learn more everyday! I relize that my son will be able to live with PKU and have a normal life!
Hi there! I know what you mean, I have a 9 1/2 month old with pku, we found out the day before Thanksgiving that Hannah had PKU, immediately we did research and didn’t like what we read. Now that we’ve been apart of the pku community for 9 1/2 months, we can see that things are normal
So what does hannah eat?? what are her levels?? i am iterested to know how other babies eat and what there levels are??b thanks
I am a 30 year old women who has been off my PKU diet for at least 15 years. I am healthy, smart, kind, and totally functional like someone without PKU.
I started seeing this Doc two weeks ago on our initial visit. My husband and I have decided to start a family. I told him when he first asked me to get married that I could not have children. I CHOSE not to have children. I had received some information from a previous Doc that my children would be mentally retarded or deformed. So, I chose not to bring a child into this world to suffer. This world can be VERY cruel. I have found that if a PKU person is on the diet and maintaining the appropriate levels that they will more than likely have a healtier baby than a person without PKU because we eat better.
My childhood was normal, it just takes the parents, grandparents, etc. to watch what they feed a PKU child. I have a feeling that your baby will be just fine.
I’ve just signed up to this forum a few seconds ago. I’m 21 and I came off my diet when I was about 18 and I still feel as healthy as ever. Although I still choose not to eat meat, yoghurt, fish, eggs etc. When I was younger it was imperative that I stuck with my diet otherwise become, ya know. At 18 I told them the truth that I found it hard to stick with the diet, being the embarrassing part of bringing weighing scales to restaurants, cafes etc. They just said “ok, but whatever you do take some vitamin supplements.” Today I had an appointment at the Nottingham City Hospital and asked them if I could restart my Maximum ade because of all the extra vitamins etc. Apart from the fact I have come off my diet, I’m a health freak.
Well I’m not a baby, but I can let you know what I eat and how my levels are. Kind of an insight into the far future. Oh and by the way I’m new here, I’m 15 and I have 5 sisters and a brother (Erica is 7 and has PKU too) but anyway mostly my levels are okay, they are usually around 8 point something so not great (not between 2 and 6 like they should) but I know that it could be worse. And basically when I got older I ate mostly low protien foods like the pastas and breads and then lots of fruits and veggies, the same with my sister (But she’s the junk food queen of the two of us). Well I hope that sort of helped a few of you along. n~Breanna~
do u all take tablits or maxamade my name is kelly and i hate being on pku but i bet u all feel the same ?
Well I’ve went from alot of different formulas because I couldn’t find one I liked. I used to drink phenylade chocolate and phelxy 10 tropical juice and the phelxy 10 bars (all at once). but before I started drinking that when I was 10 I drank phenylade orange and strawberry. And about 2 weeks ago I switched the phenex chocolate mint chews and pkuexpress coolers. Oh and my little sister drinks phenex 2 (she doesn’t have as much problems with the milk as me).
My name is Sherry, I am Mom to 18 month old Hallie. Hallie is classic PKU, she was diagnosed 6 days after her birth. Hallie is beautiful and very bright. Luckily, she is not a picky eater-she really enjoys her carrots and peaches. When she first began eating table food it was difficult, but she’s adjusted very well and it’s just part of our daily routine. Hallie is followed at Riley Children’s Hospital in Indpls. We are very fortunate to live only within a few miles of the hospital. Hallie drinks the Pheyn-Free 2 mixed with 3oz of 2% milk. In addition to her recipe, Hallie is allowed 150 mg of PHE per day. She likes potates, green beans, of course French Fries. She also enjoys Circus Peanuts and they are PHE free. Hope this helps or if you have any questions feel free to write again.[/COLOR][/SIZE][/FONT]
Sherry, Circus peanuts are free? Wow! I never knew that, I really like circus peanuts but I don’t eat them much because I never knew how many phes they had (When I tried to look them up in an older Phe book it wasn’t there). Well that certainly brigthened my day up to know that. nBreanna
Good morning! nFirstly I would like to say that I am learning English. Sorry. nMy name is Ciro. I am 41 years old. I am from Spain (Europe) and I have three beautiful children, one of them has PKU. She is 7 years old and she is very clever and belle. I think it would be very interesting to know how is PKU in another Countries. My daughter is a severe PKU but untill now she is very happy. Sometimes she ask for different foods but her brother and sister help her. nSorry for my English, I think is very poor. nSee you soon.
Hi Ciro, I think that’s great that your other children help your child with PKU. My names Breanna and I’m 15 and have Classical PKU (the most sevre case). I have 5 sisters and a brother (my 7 yr old sister has PKU too) so I know how important it is to have siblings who help.
And your english seems fine to me , Speaking of different lanuages, at my school we have german exchange students and I was really suprised to hear how well they spoke english! nBreanna
Hi Ciro, I am a mom of an eight week old PKU daughter. I live in Florida, USA and here we visit the nutritionist weekly for a weight check and blood test to see how her levels are doing. After the first year it won’t be as often. She has special formula that I mix with breastmilk to make her bottles for the day. Once she starts eating food I will have to count PHE levels for different foods and track how much she eats to keep her PHE levels in balance. Do they do all this in Spain?
Hi Breanna, nYou are very kind about my English. I still have to learn more because I need to much time to understand for example everything you have written.
Hi Kami, Thanks for your reply. I hope your daughter in doing well. I remember when my daugther Sara was eight weeks old . It was a difficult time for us, because we didn’t know very much about the illness.
In Spain PKU is detected in the first few days, after birth, I think it is de same in all countries. When Sara was born she had weekly level checks untill she was one, and then, every two weeks untill the age of 2. After that untill now she has had monthly level checks. At the moment my daughter is starting to have a difficult time because she wants to eat everything and she asks why she can not eat what she wants. I think from now she needs more help and I hope everything going well. Kind regards from Spain.