Advice Needed! PLEASE!

Advice Needed! PLEASE!

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Advice Needed! PLEASE!

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October 18, 2010 in Uncategorized

@font-face {  font-family: "Cambria";}@font-face {  font-family: "Lucida Grande";}p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 9pt; font-family: "Times New Roman"; }div.Section1 { page: Section1; } Hey PKU Community! I'm Page Bailey from New Orleans, LA, and I am currently a freshman at TCU in Fort Worth, Texas. As a child and all the way through high school, my diet was never really an issue. I had good levels, followed my diet, saw my dietitian regularly, checked my blood when I was supposed to, etc. We all know the drill. However, I’ve always had the issue of not getting enough calories in my diet, which can do a lot more damage for us. I also attended a summer camp for 10 years, and the camp directors were always very accommodating to my diet, for example, they would allow me to edit the menu and replace what I couldn’t have with low-pro foods. So, I thought college shouldn’t be any different. Oh I was soooo wrong. We are required to have a meal plan at TCU, but it isn’t like most schools. You pay a certain amount, and you get unlimited swipes of your ID card in the cafeteria. I also thought it was going to be easy because we can store food in our room, and LUCKILY the staff ordered me low-pro foods from Cambrooke because by state law since I am boarding here, they have to feed me, thus they have to order my foods. Now, I’m sure you’re thinking, “Why is this girl complaining?” Originally, the plan seemed flawless. They have a 4-week rotation of the menu, so I was asked to go through and do edit the menu, just as I would for camp. No problem. Sure, it took a while, but it was worth it. Now, I am two months into my freshmen year, and this PKU thing is not working out. Not only does the staff does not use the menu that I devised (even though it took me 3 hours), but I have to email them at a certain time everyday and inform them what I will be eating and when I will be coming in to eat. I also don’t eat enough, and let’s just say the whole issue is a little shaky. This may seem like complaining, but I am 8 ½ hours from home with no transportation to run to the grocery store, living in a dorm room with no kitchen to make meals. I do have a microwave and fridge. So, if anyone has any suggestions about food or whatever to make this college/PKU transition easier, PLEASE let me know! I’m starting to worry that my diet is going to negatively impact my academics and my emotions if I don’t take action soon enough. I’ve tried talking to my mother about this, but she makes it all sound so easy. It’s all easier said than done in my book. Thanks a million! I’ll be looking for yall’s responses!

3 Reviews of Advice Needed! PLEASE!

  1. Registered: Jun 27, 2009

    Posts: 0

    , New York

    How frustrating that must be for you. Talk to an administrator at your school and iIf you continue to encounter problems, you might need to set up what is called a 504 plan through your school. Section 504 of the Rehabilitation Act of 1973 is what legally requires schools to provide you with your low protein foods. If you have that enacted, then once they know you could “sue them” chances are they will step up. It is sad that that is what it takes. Cambrooke is amazing and really work directly with schools to provide low protein foods. It is hard to believe that they are given the low protein option, but you are still encountering problems. Lynn Paoella might be a good resource to talk to you — she is an amazing woman. At the bottom of the email is a link to a decent summary of the act.

    In the meantime, you should consider getting an induction heater. It is a plug in one burner-type stove top that is much safer than your traditional plug in burners. Hide it in your closet if necessary (that is where I put my illegal microwave and toaster oven when I was in college and that was just for the difficulties of being a vegetarian). This way you can make yourself pancakes for breakfast and cook your pasta at dinner time. They are a bit expensive (about $100), but will be worth it when you consider you are in school for four years. It is also great for traveling. You can plug it in at a hotel and make a grill cheese to go with the room service French Fries.

    Good Summary for 504 http://www.greatschools.org/special-education/legal-rights/section-504.gs?content=868

    Best of Luck!
    Brenda mom to Molly 10 CPKU
    Founder of Cook for Love, Inc.
    http://www.cookforlove.org

  2. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Unfortunately everything you have just described I went through last year, so I understand the point of view you are coming from. I have never been one to complain about my PKU, but my experience with the dining staff last year left me more than just a little bit downhearted at the idea of ever living in a dorm again. I don’t plan on moving away from home again until I can afford an apartment where I can handle my diet the way I want and need to.

    Do you think your mom might be a little bit more apt to help you out if she actually saw the foods, or rather lack of, that are available to you? Even if it means having her take a trip to your college during one weekend. My mom had much of the same attitude that yours does. It wasn’t that she didn’t care, but it had always been so easy handling the diet before college, so I don’t think she expected it to be as big of an issue as it was. Shortly after Thanksgiving break I invited her and my brother to dinner after one of my dance performance. After getting her food the first thing she asked me was if the selection of food I could eat was usually this small. After that point she was a huge advocate for me and fought just as hard with my college as she did years ago when my elementary school gave us trouble. In the end the school threw in the towel and offered me a refund, because they said PKU is too ‘expensive and complicating.’ As if we didn’t already know that ;).

    If you can’t get your mom to help I would see if you can enlist the help of your dietitian or PKU specialist. They might be able to offer some advice on what buttons you need to push. Otherwise Brenda has a lot of very good ideas. I ended up smuggling a toaster into my dorm room, because the dining staff wouldn’t toast my low protein bread. If your dorm has a community kitchen you might be able to cook once a week down there and then store the food for the week. I was lucky enough to live fifteen minutes from home, so I have the luxury of using my own kitchen, but regardless I ended up getting a second fridge so that I wouldn’t take up too much room (my roommate was gluten intolerant and also needed a lot of fridge space).

    Good luck and don’t give up. If I could go back and do things differently I never would have stopped fighting. Although the refund was nice, and I was able to use that to buy Cambrooke foods, I wasn’t able to eat with any of my friends in the dining hall anymore, which was a huge bummer.

  3. Registered: Sep 22, 2010

    Posts: 0

    New Orleans, Louisiana

    Thanks for the advice! I emailed my dietitian yesterday, and we’re going to start working on it. I’m starting to feel the effects of not eating enough/too much phe because it’s gotten so bad. We’re going to start working on it. I’m also going to speak to my RA about using the kitchen. That’s a great idea, BreaMarie91, thanks! I can’t believe I didn’t even think about that! But I know what you mean about not getting to eat with your friends. Because I have to give specific times that I want to eat, no one’s usually in there. I just have to keep fighting because I most definitely cannot let this get the best of me! Thanks for the advice again! I’ve been trying to talk to my mom about it, but it’s nice to have people who actually understand!

    Oh ps BreaMarie91 – my roommate this year is gluten intolerant as well! Crazyyy!

    Thanks again!

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