Kuvan

There seems to be more and more treatment options every year. Wether they are studying it. Or fda approved. I just happened to choose kuvan. Which has been around for a good solid ten years. And ive been taking it since it first was approved. Of course I was a responder! I was really nervous to even try it. But im glad I did. Unforuntley kuvan works ok for me and not like the others. Some people have a drastic change in there phe intake goal. And then there are people like me who it kinda works for! If you struggle with high levels I would reccomend kuvan! 

Keeping track of phe.

Ive always had troubles keeping track of phe. I ether forget or I just get frustrated by math. And wondering if im figuring out right! Until I had my clinic introduce to me the how much phe online website that helps me keep track. And I absolutely love it and would recommend it to anyone. And lets be honest its hard to keep track of everything you eat. But thats just how the pku life style is! But being a new mom and having the mind set of putting your family first. You tend to forget to do it. And thats what I currently struggle with. But its all about taking one step at a time!  

Be your own advocate

Has anyone ever gave you the advice to be your own advocate? Well I suggest you take the advice! In a world with little knowledge with rare dieases its your job to educate others. Having a rare diease like my self, i nor should you feel ashame or feel sorry for your self. Its not life sentennce its just a life style. A way of living just to be healthy and feel good. Why not advocate for you self and educate the world. Be proud and embrace being different 💕

Saving new born screening

click to save new born screening ❤

New born screening its so important. Why is it important im sure your wondering! 

Heres why it is... 

New born screening tests for multiple different things as soon as a baby is born. It tests for rare dieases like pku or hearing. Its a test to check that every thing is ok with your baby. How ever if its not done in a timely matter then there could be consequences depending what the baby has. With out new born screening being provided in all 50 states the chances of effecting new borns are greater or may even cost a life. The link at the begining of the page is to send a letter to the state senator to understand the importance and will stand behind the bill. If we all get involved and have them see the importance of the new born screening. Then they would see why they need to pass this bill. Lets save more lives and educate more ❤

The struggles with high levels before and after pregnancy

Anyone with pku can agree with me that phe levels are fustrading, whether there high or low! Most teens and adults are the two groups that struggle the most with phe levels. Why you may ask? Because we all can agree that we want to be socially acceptable and to "fit in" some dont really want to accept the fact that there different. But I learned to accept being different. I'm greatful that i am healthy. I have to admit I wasnt always an angel when it came to my pku diet. Ive tried things that I shouldnt be eating at all. But i can say one thing that I never was brave enough to try meat. I always looked at like I was a vegetarian. But having temptation to try foods that arent pku friendly is always there. Thats where the self control plays the biggest part. Before i was pregnant I wasnt on diet. But it wasnt til I found out i was when I decided to go back on diet for the safety of my baby. But since I had the baby its alot harder to stay on diet. Because I always make sure my son is tooken care of. Before I intend my needs. And alot of times you get hungry and you dont think about counting phe you just eat it. What can i say? Guilty as charged.. But I also had the since of victory after i had my son. Seeing how handsome and healthy he is. It makes you want to treat your self. And lets just say if you do it alot you always fall back into the same pattern. For those that are reading this and there completely lost in what the paragraph is talking about. Let me inform you! So when a pku individual eats to much phe it gets trapped in the blood stream and makes its way up to the brain. And it hurts the brain. Some side effects occur like mood swings, depression, anxiety, troubles focusing, making decisons, and lowers your iq score. And it is possbile to have a stroke or seazure which isnt too common. But when my levels are high I can tell. Not feeling well because of it should be a motivation to try harder i know it is for me. 

Motherhood vs pku

Pku requires alot of time and dedication to stay healthy! But what if you feel like you dont have much time for that? Sadly most moms wether they are new or have several children can all agree that time is precious thing to have when you have it. As a new mom I can defiently say that it is easy to put your self in last place or even forget your needs. Like pku. Its one thing to forget your kuvan one night. You think it's no big deal. But it can become a really bad habit. I can definely admit that I am guilty of that. But finding the perfect balance is hard but some times you have to take it one day at a time ❤ 

Depression.. Pku related or postpartum?

Let's talk about the elephant that's in the room. A lot of people frown upon sharing real emotions so if we're being honest here I have dealt with depression for years. But with PKU it's hard to tell if it's genetically or just PKU related. Some people might wonder how PKU plays a role in it. But it can if your levels are not in control. It can bring you into a dark place and bring out the worst in you. It can make you look in a mirror and not like the person that you are. Depression is not something to joke with. It brings you into a dark hole and all you want to do is see your way out. But some people are so scared to speak up when they know they need someone to talk to or at least need some type of help. For years I never did but after I had my son my depression came back and it came back with a punch. I realize that the depression wasn't just postpartum it was also PKU related. Not a whole lot of people really understand having both at the same time until they walk into your shoes but in the PKU Community I'm sure anyone could sympathize. But having depression doesn't mean you're trying to seek attention I just means that you want to be happy you want the darkness to go away. But I didn't just have depression I had really bad anxiety to. It's hard to admit when you're not completely okay cuz you don't ever want anybody to look at you like you're crazy. But my advice to anyone that ever feels that way is to speak up and get help. I'm proud to say that I did and then I feel a whole lot better I've seen what personally could happen if I never seek help and I love my family so much that I would not want him to put through so much hurt that I experienced when I was younger. But anyone that has PKU here is my absolute advice to you if you are a teenager, whatever you do don't ever try anything new that you're not supposed to or even fall off diet that's where everything goes wrong and then the more you do it the more it doesn't feel like you have a conscious anymore about what you eat. To adults I completely sympathize on how hard it is to stay on diet on at all times. Between Financial burdens and finding the time between having a full-time job or raising a family. It's not easy life is a lot busier than what it used to be but I can also say that if you work real hard at your diet you'll feel more proud of yourself I know I did.  and I'm going to be honest I am no saint and I meant the I've struggled since my son has been born but it's a struggle that I'm willing to face and willing to find a way to make everything work. so if anything I hope when you read this you take some advice from it

Motherhood and pku part 1

Its been 8 weeks since Bentley was born. Some things about being a mom i kinda got use to it. But I know I still have a lot to learn since I'm a new mom. Luckily my son doesnt have pku. Although i have to admit its hard to keep up with your low protein diet and taking care of your new born needs. But I know they always say make sure you take care of your self so you can take care of the baby. Which I'm still working on. But I know I can do it. ❤

Pku and health insurance

Everyone in the pku community can all agree that dealing with insurance is annoying. For people like us or anyone in the rare dieases comunity can relate to the fustrations of insurance. Alot of insurances will not cover rare dieases like pku. The reason why you might ask? Its because in there eyes they dont see the reason to cover it if theres not enough people in the world that have it. Which if you ask me is really stupid and defeats the whole purpose of being RARE. 

But if its one thing i learned since I turned 18 and had to take over insurance responseabilties is dont back down. 

What i mean by that is... Dont let insurances bully you or tell you no. As long as you have a clinic behind you ready to help you. It will help you a whole lot. 

What ever the case may be dont take no for an answer and be an advocate for your self or your child because no one will truly fight for what you need until you put your self our there and have your clinic back you up! 

New born screening awarness

If your pregnant and have pku this is definitely something you may want to consider reading... 

As you know September is new born screening awareness month. For those that are first time moms may have alot of questions about it. I did! I realized that not Every state is the same on the time line of when you will get the results. 

When my son was born he was in the nicu for troubles breathing at birth. At first I was asking all the nurses that took care of Bentley if they know how long it would take for the results and if they done it already. Needless to say i had to stay on top of them about doing the test on my son. Which i didnt think I had to do. But im so thankful he doesnt have pku other wise I think he would of been detected alot later then he should. Which is a scary thought. My advice to any soon the be pku moms make sure you stay on them about the new born screening. They dont truly understand how crucial it is. Because they don't understand pku