Tips I've Learned the Hard Way

Tips I’ve Learned the Hard Way

Avatar of Camille

Tips I’ve Learned the Hard Way

January 8, 2014 in Uncategorized

 After having PKU for my entire life and dealing with it for 26 years, I have found a few things to make life a little easier.When going on a roadtrip/camping trip/vacation, it's easy to just throw the diet out the window for a couple days, but it's actually not that hard to deal with it.  The first thing that makes it all a bit easier is to pre-measure out all formula and put into ziplock bags. Then when you are ready to drink it, snip off an end and empty it into the container. Also, I never eat breakfast at restaurants (they don't have much for me because I only get 350 mg per day) so I premeasure lo-pro cereal or other breakfast food. If it's done in advance, it takes a lot of stress out of the way.Schedule one day of the week a "blood test day" so every Monday morning before breakfast, take a blood test and send it in. Getting on a weekly schedule helps you stay with it. Having a parent/roomate/significant other that knows your situation and reminds you  and is always looking out for you is also a big help. This might sound a little weird, but I use Lighthouse Salad Dressing (they are manufactured in my hometown) and I had a pile up of the glass jars with twist on tops. I knew that I had to repurpose them somehow... at first it started with throwing fruit in them and taking them to lunch. Then I realized that they would be perfect for a single serving of formula. I use them all the time now. When I go hunting, I fill one serving of formula powder and as I need more energy, I add water to the container and drink it. I also take it to work with me. It's nice becuse I live on a bumpy road and with the lid on, it can't spill. And if you use the salad dressing in the first place, the container is just a benefit!In restaurants, sometimes it's a pain to try and explain to the server your diet. When I was younger, my mother would tell them that my sister and I were on a restricted diet and could not eat certain foods. It always annoyed me, but I was young and it was my mom. How could I argue? Well, I worked in the restaurant business for a while and learned a few things. If you explain about a strict diet, typically it doesn't register because these days "diet" means that you are trying to lose weight. If you drop in the word "allergy" it's a whole different ballgame. A lot of places have certain special procedures for allergies. I personally can't have a bit of dairy (or I will throw up everywhere) so I will tell the server that I am allergic to cheese.  It saves time by not having to explain PKU to the server who probably doesn't care anyway. They all understand what an allergy is.Continuing on the restaurant theme...always ask for sauces on the side. Just when I think they are going to put an average serving on a salad, they make it inedible with the amount of dressing.Beware of buffets: sometimes they throw hidden ingredients in. If you are unsure, don't take it or ask someone! It's better than getting sick. When you're a kid, there is nothing cool about getting your blood drawn. Pep up the process a little by letting your kid pick out their favorite bandaid package and only let them use it when they have their blood drawn.The best lunches I make for myself are either lo-pro pasta or rice. There are so many different ways to spice it up! Make it up early in the morning before work or school and put it in a Thermos so it will be warm when you eat it at lunch! Always ALWAYS carry extra formula in your vehicle. And something to make it in. Snowstorms, tornados, floods, wind/dust storms can delay plans or cause unexpected things to happen. Usually, it's fairly easy to acquire food when you're stranded...but formula is impossible. Always be prepared!!For adults who would like to have alcohol, one 12 fl oz can of beer = about 40mg of Phe (The darker the beer the higher Phe content.) That's very restricting for a person who is only alotted 350 mg per day. It's better to drink hard alcohol...although it should always be done in moderation :) 

2 Reviews of Tips I’ve Learned the Hard Way

  1. Registered: Nov 27, 2013

    Posts: 0

    Arlington, Vermont

    Thank you for posting this. My son is almost 6 months old. We did a day trip with my 3 year old daughter yesterday, and ended up having to hit McDonalds for lunch due to time constraints and poor planning. My daughter does not have PKU, but my son does. Thankfully he is only at baby foods, as I realized how hard it can be to go out to eat with dietary restrictions if you don’t plan well. I don’t want my son to feel isolated, so I went vegetarian so he won’t be the only one not eating turkey at family holidays, so even this makes fast food boring! We like to hike and go camping, so I know I need to start a checklist. Good idea about allergies. I am allergic to cinnamon, so that isn’t a new concept. And much easier to explain!

  2. Registered: Oct 1, 2013

    Posts: 0

    Sandpoint, Idaho

    I would imagine that it would be a bit difficult having one child with PKU and one without. I was so lucky that my sister had PKU too, but if your kids are close then you shouldn’t have a problem. It is a blessing that your oldest is the one without…she can be the “big sister” and watch over your son to make sure he doesn’t eat the wrong thing. Definitely get the whole family involved with cooking and have choices available for him to eat that other people can eat too (green beans, salads, fruits etc) so he doesn’t feel left out. If you ever need someone to bounce ideas off of, shoot me a message and I would be glad to help you.

Add Comment Register



Comment

Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....

    Archives

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional