The struggles/rewards of pku

Pku has always been a challenge for me. As an adult it seem more like a war then just a challenge. Doctors who work in the profession can definitely say that teens and adults are the ones that struggle the most with their pku on average. Which is true. As a child your parents are always in your corner and watching everything you do and they always advocate for you. But everything changes when you become a teen. You are more exposed to social events that exposed you to different foods that make tempting to try. As a teen All you care about is fitting in or not wanting people to interrogate you about having pku. Because you may not even feel comfortable in your own skin. That's where the self control is lost. And you attempt to try things that are an absolute no to pku diet. But as an adult it doesn't get easier. You even more busier with your own life now then ever. Wether it's working a full time job or a full time student. Sometimes you may feel like you can't catch your breath! It's easy to forget your forumla or to count how much phe you had consumed for the day. The pku diet requires time and effort. The more your motivated to stay healthy the better. But I can definitely admit that I went off diet from the time I was a teen to the age of 23. I really encourage adults to try to stay on diet. Because consequences are far greater and staying on diet. When I was off I had dealt with depression,anxiety migraines that never seem to want to go away, moodiness and having a hard time trying to make life decisions or any decisions in that matter that are rational. Dealing with all those side effects, effected every part of my life. I was super socially akward. I forgot what it was like to feel healthy. When I got back on diet I felt the world of a difference. Every struggle I had with the side effects to high levels disappeared. I was able to think clearly and was just loving life. Ans still am. My relationships are alot healthier. I truly recommend anyone that's off diet to consider to getting back on diet. Because being healthy and feeling good is so much better. Then always feeling awful. Like there's constantly a dark cloud over you. 

Conquering maternal pku

From the time I was freshman in high school to the age of 23 I was off diet. 
But on December 4th of last year is when we found I was pregnant. My levels were currently at that moment in time were an 18. Which scared the hell out of me. And not sure how I was going to manage this challenge. But from going to Emory metabolic camp for years. They taught me a lot about maternal pku. As soon as I got the news that it was positive I contacted my clinic. Within 5 minutes from the email that I sent. They called me.  They already had a plan set in stone for me. In the begining they wanted me my phe intake to be 200mg. And drinking 8 scoops/ packets a day! And making sure I sent out blood spots twice a week. In the back of my mind. I knew that I was ganna struggle in cutting out foods that I was eating while off diet. But it was also a challenge to track my phe intake. Luckily they recommend how much phe website. And I fell in love it. It helped me so much. I basically lived off salads and low protein pasta at the time just to make sure I got my levels down. But within two weeks of finding out I droped them to 2.0! I was so proud of my self. For about 6 months of my pregnancy I was nauseous all the time. I didn't know until i was informed by my clinic that puking was not good for my levels. Which I struggled for the first two trimesters of my pregnancy! To the point I had to ask for nasusa medication. Which by the way I hated. It always made me feel like a zombie at work. Because it was pretty strong stuff. I was seeing two different obgyns and going to my pku clinic. I basically lived at the drs office. But it didn't bother me. Because the goal at the end of it all was a healthy baby! When I was about 15  weeks pregnant I found out I was having a boy thru my high risk Dr. My high risk Dr was in charge of doing my ultrasounds and examining the growth of the baby. My regular Dr was just in charge of the delivering and any other needs I have. I've been pretty blessed so far! With out all the support from family, my fiance, friends, and all four of my drs I won't have such a successful pregnancy. I'm truly blessed. Pku pregnancy isn't easy but it can be manageable if you have the strength and motivation to do so. It trains you to start becoming selfless and thinking like a mother. Pku maybe a pain in the ass at times but it makes me stronger in every way. 💙

Having pku as a kid.

When I was a kid. It wasn't so easy having pku. I never liked being an outsider. I hated the attention I got from people when it came to eating things differently then others. The constant questions were always annoying. Seems like in today's world kids don't like for others to be different. Luckily my family always made me feel as normal as possible. my dad always tried to cook foods that were almost similar to what they were having for meals. But when it came to school functions like school parties that's when the unwanted attention was there. With so many questions and weird comments. Or any time I had brought my forumla out to drink. The first question I get is... Is that goat's milk? First of all that's gross and second of all why in the world would I carry around goat's milk? Another question I would get is.. is that babies forumla. Honestly NO I hate when people ask that. For any one with pku that's more of a rude comment then a question. Which even when I explained my self what it is. I still got crazy weird looks. Honestly I always wanted to be "normal" just like every other kid. But when I got into high school I realized there's no such thing as normal. and there's not. I rather be different then anyone else. It took a long time to accept that and to be confident about having pku. So why try to hide apart of you from the world just because no one likes others that are different them? I say screw them and live your best healthy life! Live the best version of you! ❤️💙

Introduction of my life with PKU

Hello world! 

My name is Sarah and I have classical PKU. For those of you who don't know what PKU is. It's a genetic condation that was detected at birth. People with pku can not break down a certain type of amino acid called pheynlanine. Having pku means that you have to keep track of everything that you eat and the amount of protein you consume. Over the years a lot of people always looked at me like I was crazy or I just made it up. But the reason why not a lot of people know about it is cause it's a rare diease. There's about 19,000 people in the united states alone with pku. That's why it's so exciting to meet others that have pku. It makes you feel normal for once.  And there's not so many questions all the time! And I don't always have to hear the famous line of I would die if I was you because you can't have meat or hardly anything! But you can't miss what you never had. And nine times out of ten I hear that or I'm sorry. 

I'm not sorry. It's apart of who I am. It's a life style that I'm very comfortable with.