Hello, I am new here! I am 28, married with two kids. My 7 year old son does not have PKU, however recently my daughter was diagnosed with PKU one week after she was born (9-21-07). She is now almost 4 weeks old and I am getting the hang of mixing the PhenEx with another PHE source as prescribed by her doctor. I was just looking around on the internet for some extra resources and support, particularly from other parents with children who have PKU. It just all seems so daunting to me to think that she will have to basically follow a strict vegan diet for the rest of her life, at least this is the impression I get from what I have learned. I know I have time until she starts solid foods, but I am just nervous as to how I am going to integrate her diet with our families diet. We are a meat and potatoes kind of family, ya know? Definitely not vegetarian let alone vegan by any means. How do you all fit your PKU childs diet in with the rest of the family? Do you find that you need to cook separate meals, or can you cook one meal that is friendly to everyones diet? I am just seriously wondering how I am going to do this. I know I should take it one day at a time, I just wanted to hear from some other parents with older kids who have some experience with this. And what happens when they start school and want to buy lunch, go to parties and have classroom snacks? I am just so afraid that somebody will give my child an inappropriate food because I know the consequences of not following the diet can be severe. Looking forward to getting to know you all and share some ideas!
Hi, firstly I would like to say congratulations on your wonderful addition to the family! I can’t write too much right now because it is actually pretty late at night (almost 11pm) and I still have homework to finish! But I just thought I would stop by and drop you message.
The diet is actually not vegan, but low protein. I guess it is sort of similar, but not exactly because Phenylketonurics can still have things like honey, opposed to vegans who don’t eat food products made from/produced by animals. It will all work out as time goes on. I won’t lie and tell you that everything will turn out perfect, because nothing in life is perfect. But I will tell you that your little girl will grow up to become a sweet, smart, independent person if she follows her diet.
I’ll give you a quick example of what we (me and my sister who has PKU) do for school lunches. In 4th grade I took cold lunchs for half of the year. Eventually I wanted to eat hot lunches like my non PKU siblings. So we started with just doing extra portions of fruits and veggies and my mom would send alittle bit more food if the fruit and veggies weren’t enough. Then 5th-8th grade my school actually prepared a special low protein meal for me (this is what my sister does right now). My mom would recieve the school menu a month in advance. She would change the menu around to subsitute my special low protein foods in for foods I couldn’t eat. For example if the meal was grilled cheese sandwiches, tomato soup, a fruit and a veggie she would request that my school made me a low protein cheese sandwich with my bread and my cheese, tomato soup made without milk and then the fruit and veggies and she would make sure to include measurements. Now that I’m in highschool the food options are alot more open so I either bring a cold lunch or get a salad and a bag of PKU friendly chips from the ‘Salad Bar line’ at my school.
For classroom treats (for Birthdays, holidays, parties etc) my mom would send in a bag filled with PKU friendly treats. Then when a student brought a snack I would choose my own snack from my bag and either I or my teacher would let my mom know that I had something extra to eat.
Anyway, I should really go (homework calls). If you have other questions never be afraid to ask! nBreanna 16 Classical PKU
Hi I am also new to the PKU world. I have 3 boys and the youngest one is the only one with PKU. My youngest is 6mos old now and we will be starting solids in about 2 weeks. I am very nervous about this but my dietican assures me that it will not be difficult. I will let you know how it goes and I will be gald to pass along any advice that she might give me for making family friendly meals because that is also an issue in my family. In the mean time good luck. I can tell you that your PKU child is going to loook and act like a normal baby. My son is already 22lbs and people do not know anything is wrong with him unless I bring up the topic of PKU. Anyways good luck, I am sure you will do fine.
Hello, nOur son is 20 months old. He is our only child and before he was born I didn’t know PKU existed. It’s been a learning experience and I’d like to help when you need it.
I come from a meat and potatoes kind of family too. A meal didn’t seem complete unless there was some kind of meat in there. Do you have a low protein cookbook yet? It is so useful to get one even before your baby is ready for solid food. Jason and I have had time to try out different recipes and see what we like. Now we rarely eat meat at home and we haven’t missed it all that much (plus we save $$$ at the grocery store). Sounds strange not to miss meat, doesn’t it. I have discovered that I REALLY like zuchinni. Before I had Easton I don’t think I had it more than twice. Now I use it a lot and love it. There is a recipe for Veggie Speghetti and I look at the zuchinni as the meat replacement. I love it. I cut it in thick chunks and it has a great texture. The change in diet has been good for my husband’s health. He has lost a few pounds and looks healthier.
In my mind and my actions I try to not make a big deal about keeping Easton on a strict diet. We simply eat to live, not live to eat. nLet me know if you need some tips. I only have 20 months of experience but I’d be happy to help.
I understand what you are saying… I am new at this as well. My son, Denver, is only 5 monthes old therefore I feeling things out.
Does anyone know if it gets any easier with working out of the home and having to counts PHEs for the meals?
One thing that makes it easier is communication. My husband and I use a small dry erase board on the fridge to leave eachother notes about what Easton has had for Phe’s that day. I’m sure something similar with a caregiver would be useful.
dayna79 u asked if things got easier as time goes on. I don’t have kids with PKU or have it myself but my 2 nephews do. I know that my sister struggles everyday with the boys. The oldest feels left out all the time seeing the things that he can’t have. I lived with them for 3 1/2 years and it took me awhile to get use to what they can have, how much, how to tell if they had too much Phe… I learned a lot in the time I was with them. I can tell you just by being with them in that time that it probably won’t get any easier but you can prepare yourself the best that you can. My oldest nephew who is 13 has some brain damage due to the fact of him sneaking into foods he shouldn’t be eating. My youngest nephew who is 6 so far hasn’t followed into his footsteps. The only way I see that could make things easier is if you try to make your dinners as close to the kids dinner. Say the kids want spaghetti make spaghetti for everyone else in the family who doesn’t have PKU or the new “hamburgers” they now have. If they want that for dinner then make the rest of the family hamburgers. I know it made the boys feel apart of the family dinner then wondering why they always had something different. My sister and I also let the boys sniff our food that we made…. I guess it helped them and they loved to smell new foods. The boys liked to help us cook or make (depending on what it was) their food so that helps out alot to. Well right now thats about all I can think of but I’m sure more things will come to mind later on.
Oh yea and the question does counting PHEs for the meals get any easier…. I asked my sister that the first day I moved in with her. I know in the beginning it was but now its easier cuz after doing it for so long it’s easy. And if your unsure about something they always have that book (I used that alot until I learned everything and if I was unsure in a spot I couldn’t look in the book I would just get something I know was safe) It’ll get easier in some areas so hang in there…. If I can do it and only in the 3 years I’m sure you can. It’s a struggle and the more they are finding out about PKU the better. My sister had my oldest when PKU was still really unheard of. She was selling bread machines to help for research on PKU.
my daughter is now 20 years old she also has pku she was diagnosed at 11 days old.from what i can remember i was guided through all aspects of sharleays diet by her doctor and dietician. you really must take each day as it comes. im sure you will be great. pku children are not that diffrent.