List of the most popular hashtags for theme #LOWPHE

Social life part two: friends PKU never held me back from joining new clubs, sports teams or making friends. I prefer to only disclose my PKU on a need-to-know basis. This allows others to get to know ME, NOT my disorder. Your child does not need to be a walking billboard. Don’t get me wrong, I am not ashamed of PKU but strive not to let it define me. You and your child will find ways to communicate with others when you feel ready. • • I can understand parents’ concerns about the effect of PKU (or another metabolic disorder) on their child’s social life. At this point, it is your life. You pour an absurd amount of time and energy into planning and preparing so your child may live a healthy life. ‼️ Good news- it gets easier. As your child grows, they will develop independence. Let them order at the restaurant. If it comes out wrong, they will learn quickly how to communicate the limitations of the diet effectively. Help them prepare low pro food to bring with them to social events. Provide support but let them experience these little challenges in a safe, controlled environment. • • I have been so blessed with a wonderful friend group through the various stages of life. These friends have been some of my biggest support systems, even to this day. Sometimes friends and family worry more about my diet than I do. They have seen my biggest challenges and been there through it all ❣️ From high school sports teams ➡️ homecoming dances ➡️ prom ➡️ college ➡️ nursing school ➡️ sorority ➡️ young, single professional ➡️ grad school ➡️ marriage ➡️ making a home, PKU has not made a difference. • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

We are celebrating a family birthday. Large selection of pku friendly cake. My son can eat everything freely - however, the round cakes with colorful crumbles “cost” 1 Exchange (25 mg phe) #pku #pkucooking #pkufood #pkudiet #pkumum #lowpro #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #phe #lowphe #phenylketonuria #raredisease #nogluten

Did I miss anything? Overall, PKU sounds scary and can certainly be time consuming but it has never held me back in any way. If anything, it has made me stronger and in turn, a better provider for my patients. I would not change it if I could. • • There are so many new and exciting options for treatment coming out so I urge the new parents to stay strong. Continue to push for positive outcomes. Your child is “normal” and will excel with your support. Please do not hesitate to reach out with any and all questions. I have made this page to support you. Along the way, I’ve found an excellent support system as well. So, here’s to you for inspiring me • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

Sometimes new PKU moms tell me they worry about what impact PKU will have on their child’s social life. ️‍♀️ Part I: dating life. As a young woman, PKU never affected my dating life. If anything it was a topic of conversation on a dull first date. My husband had no comprehension of metabolic disorders (let alone PKU) when he walked into a bar in Hanover, NH six years ago to this very day. That night he joined my trivia team named HBN for “hot blonde nurses”, subtle I know ‍♀️ Over the past six years, he has worked to understand PKU and has been extremely supportive. However, seeing me manage the diet so effortlessly sometimes gives him a false sense of security and he occasionally takes for granted how much work can go into it. When I need more from him, I tell him and we work to make the best plan for good health moving forward. Those around you may stumble but they will find their own special way of being supportive. With PKU, you must speak up and advocate for yourself. Never lose your voice You must share what you need from others to live a healthy lifestyle. Last weekend I came home to this delicious, low protein meal that my husband made all on his own from start ➡️ finish. I was overwhelmed with gratitude because I know how hard he tried on this single dish. He doesn’t excel at cooking or grocery shopping but he is my rock. He is there even when my levels are high and is actually unfazed by any side effects I experience. Of course, I had to take a picture of this yummy dish but there were staged photos he took on the camera already. Maybe he actually is developing a knack for this? : no insta hubby ❣️

Working with elevated levels all week after a viral illness that quadrupled my levels and then delicious brussels and artichokes on Easter Sunday. By mid week all I wanted was a large, veggie loaded green salad. Fresh rolls satisfy my veggie cravings but are still super low in phe. There are 70 mg of phe for two rolls stuffed full with green leaf lettuce, cucumber slices, a scoop of low pro noodles with coconut aminos and fresh mint leaves. Add whatever veggies you want and top with sweet chili sauce for all the flavor and fresh veggie feels. • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

Tyrosine is an amino acid that the body produces from phenylalanine. Those with PKU are lacking the enzyme to turn phenylalanine into tyrosine and hence have a toxic accumulation of phe in the brain. Restricting the diet and sticking to low protein foods generally eliminates this. However, daily supplementation of tyrosine is crucial and the formulas we drink are loaded with tryosine. Blood draws tell us our levels of phe in addition to tyrosine in the body. Low tyrosine can be noted in a fasting state or if formula intake is inadequate. I do notice fatigue if tyrosine is low and always feel a boost of energy when consuming formula loaded with tyrosine, vitamins and other amino acids not consumed through diet. • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

Happy cinco de mayo everyone Today I am celebrating on a flight home from one corner of the US to the other but I did have a blast at @taco.escobarr last week on the low pro food crawl hosted by @necpadorg Tex Mex is one of my favorite foods and is so easy to modify for the low protein option. We started with fried avocado that melts in your mouth. Next to the tacos This taco bar has a variety of corn tacos to choose from and all loaded with fresh veggies. Need I say more? • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku #cincodemayo

Lubicie zupy? To danie jest jednym z najbardziej tradycyjnych w polskiej kuchni Dzisiaj chcemy zainspirować Was zupą z kapusty, cukinii, marchewki i cebuli przygotowaną przez @alina_pku . A jaka jest Wasza ulubiona? #PKUconnect #lowproteindiet #pkustrong #lowphe #phenyloketonuria #fenyloketonuria #PKUdieta #przyGOTUJsobieSZCZĘŚCIE #przyGOTUJ #pyszne #zupa

Dumplings on dumplings on dumplings... Another delicious stop on the @necpadorg low protein food crawl in Portland, Maine. Empire Chinese Kitchen was one of my favorite stops on the tour. They served us Chinese eggplant, chive shiitake dumplings, spinach dumplings and garlic green beans. The flavors were outrageous and I didn’t even pause to take a picture of the garlic green beans. Tons of options for both the low protein and high protein palate so I will be back with my husband next time! • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku