I’m not in school anymore but I remember those struggles. So hard. I started to tear up when you said some family members don’t get it and won’t get it. I’m glad I’m not the only one in that situation because it can be so frustrating. Thank you for sharing and helping me feel supported even just through a video. I’d love to know how you have navigated the work environment with making sure you have lunch at a good time, drinking formula etc. Thanks for everything! -Lilly
Hey Lilly! School really is hard...as is navigating family members and friends that just don't understand. I'm so glad I'm able to help you through the videos! I'm adding your question to my list of videos to make...look for it soon!!
I relate to you so much! I also had a difficult time in highschool.. I used to have part of my formula mixed in with juice and I would get so scared that someone would ask me if they could have my juice so I used to drink my formula in the washroom sometimes.. I never wanted to talk about it and it was really hard to figure out what I could eat so my mom would make me Nutella sandwiches but I wouldn't always eat them.. I definitely got back in track in my last year of high school and beyond.. when you talked about having family that didn't understand pku, it reminded me of a time when I was having some veggies for lunch and my uncle asked me "are those regular veggies or a special kind of veggies.. pretty sure it was carrots and celery or something.. to be fair l don't think he ever got an explanation on what pku is.. but its important to let people know that you are on a different diet.. one time on a school trip my friend gave me a hot dog to eat and got upset when I rejected because she thought I was trying to starve myself.. until I actually explained myself..
Hello I’m a mother of a PKU three year old Son and a one year old daughter. My son will be starting preschool soon and I have been working with him on explaining to him he has pku. My question is “what are some suggestions or tips on explaining pku to a young child who has PKU?” Because somedays I feel like he forgets all about it. Thank you!
Ohh, great question!!! Okay, I'm adding it to my list of questions...look for it soon! And ps. Hope your son's transition to preschool goes smooth for both him (and mom!).
My daughter is 12 and she is struggling with this and also has mood issues cause of her levels being high! We’re currently trying to lower them but she don’t like it. She wants to eat what she wants and she struggles with being different ! Any suggestions of what I should do would be great!!!
Hi there! Gosh, that is so hard! I think it helped me when I had a lot of options of low protein foods in the kitchen, then I felt like I still got to choose my food and didn't feel as limited (even though I was!). It's so hard though when your level is high because handling everything is just so difficult, let alone the diet. I hope your daughter is doing better now and that her start to the new school year will go smoothly.
I met you back in June at Indy. I have a question. When you were in school were you ever buillied for your PKU? I was in Kindergarten with the nasty tasting formula and all the kids called me "Stinky Milk" I am always worried about other people's reactions to me trying to explain it to them because of what happened in Kindergarten!!😢😢
Hey, yes, I remember you!!! I hope you're doing well. And yes, I had moments like that too at school. I still think of some kids at school that said hurtful things, and I totally understand after having an awful experience like that about being hesitant to tell others about pku!! I only told my close friends after incidents like that because they were usually understanding to me.
My little boy is a couple years from school but already this worries me. School is unpredictable. And as far as family, mine still doesnt grasp PKU. Some of our relatives still believe he will out grow it like asthma, and it frustrates me to no end having to explain to them why he won't and having to explain to others why he can't simply "have a little chicken". At some point i was told i was too controlling of my son's eating habits and accused of being a germaphobe and spastic because i wouldn't let any of the other kids share their food with him at a birthday party. My wife is far better at handling those situations to be honest cause i have a tendency to yell.
School is SO unpredictable with so many factors. I've had great experiences with some teachers, and other experiences I wish I could forget. I have some awesome people I can put you in contact with to help you navigate school when the time comes, if you'd like. And your family! I am so sorry to hear that and I know how frustrating it is. My grandma tried to feed me hot dogs and meat constantly and reacted very similar to my parents as what you wrote. I can only hope it will get better as your son gets older, but I really think some people just don't get it and never will. 😕
@@ThrivingWithPKU that would be great! I know i dont have to worry about school for another couple of years, but he still has friends we set up play dates for. I still feel i have to drill it into other parents but im stubborn.
