Living With PKU

PKU Awareness Day!!

2014-12-03T11:19:00.001-08:00

Hello Everyone!

Just in case you haven't looked at a calendar yet, today is December 3rd, 2014! What's so special about today? Well...

On this day 2 years ago (2012) William and Kate announced they would be having their first baby.
12 years ago (2002) The iTunes Music Store was launched in Canada.
23 years ago (1991) Alan Freed received a star on Hollywood Walk of Fame.

And Probably the most important....

IT'S PKU AWARENESS DAY!!!!

Do you know everything about PKU?? Do your loved ones understand your disease?
If not, share this post. You can share it on Facebook, Twitter, whatever you like. Or you can direct them to the "All About PKU" link above!

http://thedailystruggleofpku.blogspot.com/p/what-is-pku.html

The Past 6 Months

2014-09-18T16:19:00.003-07:00

Hello all,

I told you all in my last post that I would inform you all what this 6 month mark means to me. It means I am coming along despite the struggles I have been faced with.

Let's go back and start in December. Yes, I was still pregnant at this point. In December, my protein levels started dropping. I started with levels in the 120s. I was working 60ish hours a week that month and eating well, but the baby was taking all my protein! By the first week in January I was 7 months pregnant and had levels down in the 50s and 60s. I was beyond tired and constantly felt like I was going to faint. Since I worked with sharp objects, my boss thought it would be a good idea for me to stop working. My levels continued to be unstable for the remainder of my pregnancy.

Then, on March 12th, my little lovebug was born!! I had dreamt of holding her in my arms for so long!! Labor was hard on me, physically and emotionally. But that was only the beginning of my hardships.

Everyone always told me that babies were pure bliss, but they never mentioned how hard it would be emotionally. Before she was born, my protein levels were extremely low, immediately after I had her they went through the roof. I don't have an exact number, because the hospital never told me what it was, but I sure felt the effects. We stayed in the hospital for 5 days, and to be honest I don't remember a lot of it. I was so foggy I couldn't think straight. Good thing my husband was there to hear what the doctors had to say because I couldn't think well enough to retain the information they were telling me.

In the first few weeks that we were home getting settled into a new life, I was dealing with "the baby blues." (Where the hormones are going down at a fast rate, leaving mom to feel extremely emotional for no reason at all.) Dealing with the Baby Blues was something I never expected to have to do. I wasn't aware of this "condition" until I was leaving the hospital. The Baby Blues are supposed to go away in the first few weeks, if they don't then it turns into Postpartum Depression.

I was counting on the Baby Blues to go away, but they never did. I wasn't thinking of harming myself or my family, but I was dealing with some terrible anxiety. I talked to my doctor at my 6 week check up, and she told me that I had Postpartum Depression/Anxiety. She prescribed me a low dose antidepressant. As soon as I got home I emailed my specialist to inform her of the new medication and make sure it wouldn't affect my levels in a negative way, or the Kuvan I was supposed to take. I say "supposed to take" because I wasn't taking it at all.

With the new little one and all the new tasks that brings, I had forgotten to reapply for NORD, the organization that helps with my copay for Kuvan. My application is only good for the year, as in calendar year. My application had expired on January 1st, and since I was taking a lower dose of my Kuvan, I was able to make my current order last until the baby was born.

My specialist told me that we should get my protein levels under control before I try the antidepressants. She said that my current protein levels could be causing every symptom of Postpartum Depression that I was experiencing. I was more than happy to hear that. Something in me wanted so badly to not have to take the antidepressants, and I don't know why. I, immediately, updated and submitted my Nord application. A few days later, I got a letter in the mail telling me I was approved once again for NORD, and I ordered my next refill of Kuvan.

I started taking my Kuvan regularly, as I had done before. Things got better!... Or at least for awhile. Even though I was taking my Kuvan and eating correctly, my levels were fluctuating and I felt the affects for sure! By this time, I couldn't just email my specialist, she had retired suddenly. I was lost, I didn't know what to do.

I decided after a while that I HAD to do something. It was getting hard to go through everyday life, it was affecting my coping, communication and thinking skills. It was affecting my relationships with everyone around me, and I couldn't let it go any longer. I emailed my representative from Biomarin, the maker of Kuvan. She told me that I needed to get in and see the Nurse Practitioner that was seeing patients at my clinic until they hired on a new specialist. I called my clinic to set up an appointment, they wouldn't schedule me. Instead, they had me speak to the Nurse Practitioner over the phone. I explained what was going on to her, and she suggested I cut back on my Kuvan, lower my dosage. She said taking too much Kuvan could cause some of the symptoms I was having. I went from taking 1800mg of Kuvan a day down to 1200mg a day.

I have been taking the lower dosage for a few weeks now, and I am not so sure it is completely solving my problems. It is helping, however.

The last 6 months have been the most eventful, wonderful, and bliss filled time in my life. But it has also been the most challenging and trying months in my life. I am still a work in progress, but one thing is for sure... God sure did bless me with such a wonderful little family!

Until Next Time,
Laura

P.S. I hope you all enjoyed this post. It was very hard to admit to myself and now the public what I have been struggling with. It's embarrassing to admit.

Big Day!!

2014-09-12T16:46:00.004-07:00

Just so all of you know.... Now that this blog is called Living with PKU, I am going to be writing about my life, even things not PKU related.

That being said....

My Baby Girl is 6 Months Old Today!!!

Ok, so I know it's not that big of deal to many of you, and for that I am sorry. But, I decided that I am finally willing to talk about these last 6 months. So be looking for that in the next post!

Season of Change

2014-09-09T16:09:00.002-07:00

As all of the returning readers can see... We have a whole new look!! That comes complete with a whole new NAME!!

You all can read my reasoning behind the changes in my last two posts. I don't think it is necessary to repeat myself again. Along with the new changes, I am going to be writing more about my life, not just PKU. PKU does affect every aspect of my life... But it doesn't take up my whole life. The new name is LIVING WITH PKU, so I am going to be writing about how I live, PKU and all.

I have introduced my self before, but since we are starting fresh I will do it again.

My name is Laura. I am 23 years old, and I am living with PKU.

I was born in 1991 and as a result from my newborn screening test, I was diagnosed with Phenylketonuria, or PKU, when I was 3 weeks old. Neither of my parents knew what PKU was or had ever heard of it. They were quite shocked and confused when they got the call telling them of my diagnosis.

My brother Rodger and me.

These are my parents, Rodger and Dena.

My parents were told that since I had it, both of them were carriers of PKU. They were told that somewhere in our family history someone from each side had to have had PKU. They went as far back as they could on each side of the family to see where the gene came from and both came up empty handed.

SIDE NOTE: I believe it was God's Will for me to have PKU and there would be no trace of it in my family history.

My parents were very good at watching my diet. I was, what they now call, hyperphe. The doctor told my parents that I was on the very mild side of this disease. I could even have a slice of cheese a day when I was a toddler!! That was very rare, according to my doctor. My parents watched my diet closely, except when I would sneak cheese by biting off the little corners of the block. Tehehe.

I grew up pretty normal, I would say. I went to public school all the way to graduation, with the exception of my 3rd grade year. I was homeschooled my 3rd grade year. My mom would pack me lunches normally. On the rare occasion I had school lunches, they had low protein options for me. When it was grilled cheese sandwich day, they made a special sandwich for me with only one slice of cheese in the middle and they would set it aside for me. (The perks of growing up in a relatively small town.)

I did great staying on diet until I started playing sports in middle school. I started off in 6th grade running cross country. I was fine with my diet through that. The hard part was in 7th grade when I started playing basketball. I was working out so much at practice that I was hungrier than ever! Low protein food didn't fill me up for long, so I started eating more protein filled foods without even a second thought. That is also when I stopped taking my weekly blood spots.

My 7th grade year I played basketball and ran track, then in 8th grade I added volleyball to the mix. That's when things started getting bad. I was eating protein and not counting my intake. I wasn't on diet at all. It was so easy to fall away from the diet. I didn't think about what I was doing to myself, and it was hard to notice how far from being on diet I really was with everything going on in my life.

In 8th grade, after spring break, I noticed a weird rash in the folds of my arms. It itched and burned so bad!! I asked my mom to take me to the doctor. We went to see my pediatrician. He ruled out an allergic reaction since I hadn't used any new products. He said the only thing he could think of was eczema. He gave my mom the name of an over the counter medicated lotion for me to use. I used it as instructed. The lotion helped, but never cured it. After awhile, it sort of went away.

In high school, I continued living off diet. I still saw my doctor and metabolic specialist, but didn't really take into account what they were telling me I should do. In my mind, I wasn't eating too far off the diet. I wasn't eating meat or drinking much milk, but I didn't take into account how much protein I was eating.

I graduated high school in 2009, the same year I started dating my now husband. I tried explaining my PKU to him, and of course he had questions. The thing that should have been an eye opener to me then but wasn't, sometimes I couldn't answer his questions. I had no idea how much I didn't know about my own condition. I look back now and can't believe how dumb I was being. I didn't know the answers to these questions but I didn't try to find out.

I started college in the fall of 2009. Being a typical busy college student, I had "no time" to try to keep up with my diet. I would go to class, come home, study, but I could never retain any information. I couldn't figure out why. I figured I just wasn't the college type, so I dropped out, moved back home and got a job.

In the winter of 2009, my weird rash came back. But this time it wasn't just in the folds of my arms. It was on my arms, chest, stomach, neck and face!! I went to my doctor and he ruled out an allergic reaction. He gave me a cortisone shot and told me to take Benadryl until it went away. After a few days it disappeared. Only a week later it came back, and WORSE! I went back and he did the same treatment. This time it went away, and only came back in the folds of my arms, so I didn't worry about it and treated it like eczema.

In July of 2010, my boyfriend proposed!!

And on February 26th, 2011 we got married.

You can't tell I like my wedding pictures, can you?

As we adjusted to our new life, being on diet was the last thing on my mind. We moved 165 miles away from our home town. But after 8 months, we were home sick and since things at my husband's job were going sour, we decided to move back.

After almost a year of marriage, in January of 2012, we started talking about when we wanted to start our family. Since I was told from a young age that having biological children wasn't an option for me due to my PKU, I thought our only option was to adopt. I decided to go online and research the possibilities of having healthy children and was amazed at the number of women with PKU had normal and healthy children!! I called and made an appointment with my specialist, who by this time I hadn't seen in over 5 years.

My husband went with me to this appointment. He had so many questions that I couldn't answer and he was excited to finally learn more. At this appointment we found that there had been more discoveries and learned more about the affects of PKU.

Apparently, my rash, that I had multiple times, was due to having too much protein. It was explained to us that the protein had no way of getting out of my system, so it kept circulating through my body searching for a way out, and eventually it would turn itself into oil and get out through the rash on my skin. My not being able to retain information in college, my protein levels were too high and affecting my memory. My foggy mind, my moodiness, my memory issues, my lack of quick thinking... yep, you guessed it!! It was because my protein levels were through the roof!!

In researching the possibilities of having children I came across this thing called Kuvan. So I asked my specialist about it. She explained that is was pharmaceutical BH4, which is the amino acid in the liver that breaks down protein. She told me that Kuvan was like a huge vitamin for my liver, that it would take the amino acids that my liver already had and makes it work better. She told me that some people don't respond to this medication and that there was a trial phase. She set me up to do the trial, but first she wanted to see how serious I was.

In February of 2013, I met with someone from Biomarin, the maker of Kuvan, to start my trial. She flew from San Francisco, and met with my husband and me at our home. It was a very interesting and great experience to see how much the company actually cares about the patients.

I started taking the medication thinking it would take the whole month of the trial phase to see if I was a responder or not. It didn't take that long at all. We found that my body responded within the first 48 hours! The rest of the month was spent finding out how much my tolerance had gone up. We found that my tolerance had gone up from 12 grams of protein per day to 35-40 grams per day!

I stayed on my Kuvan, and in June of 2013 I went to see my specialist again. This time she told me that since my levels were stable for the first time in my life, my husband and I could start a family whenever we wanted. I was SO excited to hear that!

On July 2nd, 2013, we found out we were pregnant!! I tracked my protein intake and continued to take my Kuvan. Everything was going well and in November 2013, we learned we were having a little girl!

My levels started dropping dramatically in my third trimester. I tried talking to my specialist to see what I should do, but she wasn't really giving me an answer. So I decided to start drinking 2% milk to see if that would bring up my levels. It did. I also cut my Kuvan dosage in half. By the end of my pregnancy I was drinking 24oz of milk per day, plus eating 35 grams of protein!

On March 11th, I was induced. And on March 12th, 2014 at 4:30am my daughter was born.

I am as happy as ever!!

My name is Laura. I live on the Southern Oregon coast with my husband, Chipper,

Our daughter, Elaina,

And our two dogs, Peach and Oden.

I am 23 and living a wonderful life with PKU.

Until Next Time,

Laura

Fresh Start

2014-08-28T14:59:00.000-07:00

Hello Everyone!

As most of you know, read or can read, in my last post I said goodbye. I was having a really hard time being positive about my PKU and the blog about my struggles wasn't helping anything. As you can imagine, dealing with the struggles in everyday life was hard enough, but then writing about them and editing the blog posts were making it harder. In some ways seeing them on my computer screen was making it more real (as if dealing with them on a daily basis wasn't real enough for me).

Once I told my husband I said goodbye and had decided to end the blog, he begged me to keep blogging. He told me even though the struggles were hard, that doesn't mean I have to only make the blog about the bad things. I can write about living daily life, good and bad.

He reminded me that just 2 short years ago I was lost with my PKU. I didn't know as much about it as I do now. After a lot of research and joining groups on social media, I realized how much I didn't know about my disease, and ultimately myself. I know that sounds lame, I didn't know myself, but it's true. A lot of my characteristics, my moods, my whole life has been touched by PKU.

He made a point that is playing in my head over and over again as I pondered picking up blogging again. That point he made.... There are a lot of people out there who don't know as much about the disease as they should, or as I do. There are a lot of people who are now where I was 2 years ago. They have no idea that PKU plays a part in almost all, if not all, aspects of your life.

So, as you can tell, I have decided to restart this page. But in doing so, I am going to be making a lot of changes. Starting with the name.... This blog is no longer going to be called THE DAILY STRUGGLES OF PKU. It is now going to be called LIVING WITH PKU. The new name takes the negativity out of it. There is no need to feel sorry for ourselves, we are living life with a disease that as of now has no cure. Having pity for ourselves and asking others to pity us doesn't help us at all.

I am here to support those who, like myself, have PKU, those people living with PKU that don't have as much information about it, and those with loved ones living with PKU.

Until Next Time,
Laura (Formerly known as Phe)

Goodbye For Now

2014-07-04T12:04:00.000-07:00

I am having a hard time finding the words to say for this post, but here we go.

I am not going to be posting on this blog page for a while, possibly ever again. I'm not sure what will happen but I have decided to start a new blog page.

As I go back and read my previous posts, I realize that this blog is a real downer. Even in the title, it shows a pessimistic view on PKU as a whole. While having PKU is no walk in the park, it's not all bad. I have joined many groups on Facebook that consist of people around the globe who have PKU. Since joining these groups I have learned many things, but the most prominent:

EVERYONE THINKS OF THEMSELVES POORLY BECAUSE OF PKU

EVERYONE BLAMES THE BAD THINGS THAT HAPPEN IN THEIR LIVES ON PKU

NO ONE IS THANKFUL FOR THEIR PKU

I know that last one sounds weird. But honestly, out of everything that God could have given you He chose PKU for a reason. He could have given you a much worse disease or condition. But He didn't. It's time to be thankful for what you have and what you don't.

"In every thing give thanks: for this is the will of God in Christ Jesus concerning you."

I Thessalonians 5:18

Baby Time!!

2014-03-26T13:33:00.000-07:00

As you may know, due to my last post, I was finally able to get pregnant... Well, I would like to introduce to you my sweet daughter, Elaina!

She was born on March 12th after 22 hours of labor (I was induced on the morning of the 11th). She weighed in at 6lbs 7.2oz and was 20.75in long!! She did have a moderate case of Jaundice when she arrived and had excess Biliruben (not sure if I spelt that correctly). But after some photo therapy and 4 days in the hospital (starting the day she was born), she is doing great!! Like every other baby born at the hospital she had her 24 hour screening test, and it was rushed to the lab. We haven't heard anything back from that yet, so her pediatrician is hoping no news is good news. On Monday we went in for her 2 week well baby check up and did the next and final phase of the newborn screening test. Her doctor says she usually hears back within 2 days (which is today) if something is abnormal and if she doesn't hear anything today she will be calling the lab on Friday to make sure. OF course she doesn't do this with every newborn, but since I have PKU and Elaina has a 25% chance (if daddy is not a carrier) of having PKU as well.

We are anxiously awaiting to hear back from her doctor, hoping she doesn't have PKU, and enjoying life with our new little addition to the family.

Until next time,

PHE

Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU

Follow me on Twitter: Phe_ThePKUGirl

Surprise!!

2014-03-03T19:12:00.002-08:00

Hello everyone!

          It's been a whole year since the last post, and for that I am sorry. This last year (more or less) there have been quite a few changes in my life. Not only with my PKU.
           First with the Kuvan trial. I believe you all know that I did the Kuvan trial last year and discovered that I am a responder. I went from being able to eat 12 grams of natural protein with levels in the 400s ml/dl... to being able to eat 30 grams of natural protein with levels in the 120s. That was quite a shock to me and my lifestyle!
           Second of all, which I didn't announce on here to all my readers... I got PREGNANT!!! My husband and I found out in the beginning of July. Shortly after that, we had our first appointment with my midwife. She did an ultrasound to make sure I didn't have a false positive. We discovered I was indeed pregnant and at the time of the appointment I was 6 weeks along! Both my husband and I were over the moon!!
          I was beyond nervous to be pregnant. I was always worried about my levels spiking without my knowledge and I would miscarry. I had to keep in mind that I was being watched very carefully by my specialist. I was doing blood spots twice a week. As I got farther along my body decided to handle more protein!!
         We found out in early November that we were expecting a little girl!! We had been told 6 weeks earlier that there was a 70% chance that we were having a boy. We were told that it was still VERY early to tell for sure (so I couldn't go shopping yet). My husband and I didn't care what we had. We kept saying whatever God decided to give us was wonderful. I wanted to know as soon as possible because being the girl that I am.... I WANTED TO GO SHOPPING!!!!
         Now, I am currently 39 weeks along. Our little girl is due to be born soon! I can't wait to see what she looks like, how much she weighs, how tall she is, and if she has PKU or not. And of course I will post all of the details.

Until next time,
Phe

Now Onto Reality

2013-03-13T12:46:00.002-07:00

Hello, again!!

Well, this past month has been an interesting one. As you all know, or should know from my previous posts, I did the 30 day Kuvan trial. I never thought it would entail so many things. I had to be very careful in every aspect of my life, which is not uncommon considering I have PKU.

It started on February 7th. I had to take a blood test and then write down everything I consumed for the day. Then at supper time I took the medication. The first dose was very hard to take because I wasn't expecting it to be so acidic and I got heartburn as soon as I swallowed it. The second day, I had to repeat day one, including the blood test. It was the same story for the third day. After that, they (being my dietitian in Portland, OR and the dietitian from Biomarin in San Francisco, CA) wanted me to cut back to only doing blood tests on Sundays, which I think anyone would be happy about.

I started on only 12 grams of natural protein daily, with 30 gram of medical protein. Well as soon as they figured out that Kuvan does work for me, they started putting together a "Booster Plan." This was to build up my natural protein intake steadily to see how much my body could handle with Kuvan. So far I have not heard back about any of these levels. But there plan was interesting.

On the first day of the "Booster Plan" I was to add Nonfat Dry Milk and chocolate milk to medical beverage. This mixture was surprisingly very tasty. In the next few days, that was not the case as they were adding more of each. A few days later we started adding one egg a day. I got up to adding 20 grams of natural protein to my existing 12g. Like I said, I haven't gotten any test results back from the time of my Booster Plan. But I am very hopeful for acceptable levels.

After my 30 day trail was over, it was then up to my insurance to decide what they were going to cover. Biomarin had a representative working with my insurance during the trial just in case it were to work for me. Well as you may know, I am prescribed eighteen pills a day, which equals 558 pills each month. Unfortunately, my insurance will only pay for just under 400 pills a month. That leaves a large expense to me, being that the pills are $37 each. I, also, have a 20% copay. That means my part, if my math is correct, is just over $9,000 per month.

That is a large bill for a single prescription for even the wealthiest family. There is, however, a foundation called NORD (National Organization of Rare Disorders), that I was unaware of until recently. They help those with rare disorders pay for medications that they cannot afford, like me! They do have certain requirements as far as financial caps. They determine the amount of help, if any, by your family size and your annual income. The basic standard is below national poverty level. I had no idea what the poverty level was until I applied for this assistance program. Apparently, my family income is in the poverty range. I thought we were doing well for our age and area. But I can't complain because I do qualify for the assistance. I am very thankful for that.

If you have any questions concerning NORD or would like more information please visit their website at http://www.rarediseases.org/.

Also, if you have any question or comments for me you can visit my facebook page ( the link is below). You can also send me a message if you want it to be more private.

Until Next Time,
Phe

Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU

Follow me on Twitter: Phe_ThePKUGirl

Kuvan Thus Far!

2013-02-18T21:59:00.000-08:00

Hello readers!

It has been an interesting past few weeks. As most of you know, I started my Kuvan trial!!

I started taking the pills on February 5th. I was told, by the Kuvan Metabolic Specialist, that the pills are very acidic. She wasn't kidding! The first day I took my dose with water. I put the water in my mouth first, nervous of what was coming next, and dropped the pills into my mouth. As soon as the pills touched the water it tasted as though I had squirted lemon juice in my mouth! It was so sour!

Enough about how it tasted, now onto the more interesting stuff. The day I started Kuvan, February 5th, my blood Phe level was 347. The next day, February 6th, my level went down to 200. I thought that was awesome!! My Metabolic Specialist was very pleased. But that's not all, on the third day, February 7th, my blood phe level dropped to 89!!

So, with that information, Dr. Huntington is wanting me to finish out the trial (of course) and then try adding more protein to my diet. She was even talking about an egg everyday or adding fat free dry milk to my formula. I am more excited about the possibility of getting to eat an egg, but I'll have to try the dry milk, too.

Anyways, that's all I have now. If you have any questions or comments don't be afraid to contact me on the Facebook page listed below.

Until next time,
Phe

Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU

Follow me on Twitter: Phe_ThePKUGirl

Kuvan Meeting

2013-01-16T13:23:00.001-08:00

Hello Readers!

Well I just got done with the meeting I had about my Kuvan Trial. I can't tell you how excited I am to start this. I am sitting at home waiting for my package from FedEx to arrive that contains my months supply of Kuvan.

As you may know, the Kuvan Trial is free for one month. Well during the first month one of the reps/ case managers from Biomarin (the company that makes Kuvan) will be working with my insurance to figure out how much they will cover. As of right now, I am not too worried about how much my insurance will cover. Right now, I am more worried about is if I will be a responder or not. But the company will be working on the insurance just in case I am a responder. That way I won't have a lapse in treatment (hopefully).

While Karen, the dietitian from Biomarin, was here she gave me the details of what this trial will include. It won't be as hard as I once thought. (Thank Goodness!) I was under the impression that I was to take my 18 pills a day first thing in the morning. Karen, however, told me that it is best to take them with the larger meal. So, since I don't really eat breakfast, the morning is not the best time for me to take them. But instead, take them with dinner.

Another thing that she cleared up for me, I thought I had to eat the same exact things everyday during the trial. That is not so, I can vary in the foods that I eat as long as I stay within the same range of protein a day. I was very happy to hear that. Also, she told me that I could either swallow the pills or dissolve them in a drink.

I also, got quite a few little gifts. She gave me a pill crusher, a food journal, a pill holder, a ton of pamphlets, lancets to test with, and a lancet disposal jar. Many more I am sure, I just can't recall them all.

AND, I came home last night to find a big box of medical foods on my doorstep that I didn't know was coming. So that was a nice surprise.

Well, that all I have for now. If you have any questions or comments you can comment below, or you can contact me on Facebook at the link below.

Until next time,
Phe

Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU

Follow me on Twitter: Phe_ThePKUGirl

Update

2013-01-08T20:30:00.001-08:00

Hello, Everyone!

The date is set. I am meeting with the Biomarin representative next week! She will be bringing the months supply of Kuvan. The trial is set to start on Thursday, I believe. I am a bit nervous but mostly excited to start the trial.
I am hoping this Kuvan brings down my levels, dramatically. I am hoping that this allows a lot more freedom with my diet. (It probably won't be that simple, but a girl can dream). Anyways, I just wanted to let you all know that the date is set.

Until next time,
Phe

Merry Christmas and a Happy New Year!!

2012-12-23T18:19:00.001-08:00

Well, hello again readers! Man, it has been a crazy month. I have been quite busy with work, lately. I work in shipping so December is the craziest month for that, with Christmas. But it is almost over, and for that I am thankful.

I would like to reflect on this last year. One year ago today, I was not healthy at all. My low protein diet was practically nonexistent. My mind was foggy or cloudy more often than not, I was cranky or moody and just not me. Now, I have been on diet for the last 10 to 11 months and I feel as though I am a different person. I can think clear and my moods are those of a normal girl now. :)

In the next year, I hope to have my proteins in baby friendly range. My goal is to get as healthy as I possibly can be. And who knows, maybe God has it planned for my hubby and I to start a family.

That is all I have for now. I wish you and your family a very Merry Christmas and a Happy New Year. May God bless your family in this new year.

Until next time,
Phe

Kuvan Soon??

2012-11-16T21:36:00.001-08:00

Well hello, again, everyone! I know I promised to update you all on my last appointment, but since then I have not had access to the Internet. For that I am sorry. I have noticed a steady amount of page views everyday since my last post, and I am guessing that some of you are interested in how it went..... so here goes.

When I went up to my appointment ( I say went up because it is a 4 1/2 hour drive north) they had scheduled me for both a physical with the nurse practitioner and a regular appointment with my metabolic specialist. My physical went great, good blood pressure and everything. Of course they did blood work to test all my levels, but we will talk about that a little later.

In my appointment with the Metabolic Specialist we talked about Kuvan. She agreed that I am a good candidate for it. She had me fill out all the paperwork for a trial. We discussed my insurance because she was concerned about the copayment. I had no idea how outrageous the price of Kuvan was.

Kuvan is $37.00 per pill. That would already be expensive if I only had to take one a day... But I would have to take 18 pills a day!! That is $666.00 per day for me to take this medication!! Now if that isn't crazy I don't know what is.

Like I mentioned before, I filled out the paperwork for a trial of Kuvan. In studies they have done, the results show that not all candidates are responsive to the medication. They can't even say that a certain mutation of PKU will respond. Therefore the 4 week trial is how they determine whether or not you respond.

I got a call the other day from a representative of Biomarin (the company that makes Kuvan) to set up my free trial. They are so efficient that they want to send the representative (I cannot remember her name) up to see me before my trail. She is going to hand deliver the medication to me and help me set up a routine to take the medication and regulate everything else PKU related.

My husband and I have talked about it and we think it works best for us that I start this trial of Kuvan at the beginning of the year. I will keep you all informed when it gets closer.

Until Next Time,
Phe

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Losing Weight

2012-10-21T15:15:00.000-07:00

Hello, readers! Once again it has been far too long since I have written. Since we last chatted I have started a new job and have been getting ready to move. My new job has kept me pretty busy with learning the tasks I am responsible for, as well as working the hours that are given to me. I must say I love my new job more than any other job I have ever had. That's besides the point though. I haven't been too busy with getting ready to move until the last few weeks. Anyways, I digress...

Lately, I have been thinking about weight loss and being healthy. I have been trying to lose weight lately. I haven't been comfortable with the way I look or feel for a long time now, so it is about time I do something about that. I never expected to feel the way I do now.

Having PKU and trying to lose weight is surprisingly easy and hard at the same time. Of course, having PKU, you have to cut out high protein foods. Then, trying to lose weight, you have to cut out high fats and carbohydrates. So basically, what I have been doing is drinking my formula and eating fruits and veggies. I haven't been too worried with cutting out bread because as of lately, I haven't been eating too much of it. I realized that is where a lot of my protein was coming from. I want to try to make low protein bread, but I just haven't gotten the mix for it yet.

On another note, I am scheduled to go see my Metabolic Specialist on the 30th. I am hoping that this appointment is the one where she puts me on Kuvan to try it out. I will update you all after the appointment.

Basic Bread Recipe
Makes 12 servings

1 box (500 g) Loprofin Mix
1 sachet dried yeast (supplied with mix)
2 tbsp vegetable oil
425 mL (about 14.5 fl oz) room temperature water
1 x (2 lb) bread loaf pan + 1 x (1 lb) loaf tin OR 3 x (1 lb) loaf tins
Optional Flavors to be added at Step 4:
Sweet breads: 250 g (8.5 oz) dried fruit of your choice, 2 tsp sweet spice and/or 2 tbsp molasses.
Olive and Tomato Bread:1 tsp salt, 3 tbsp olives and tomato

Preparation:

Preheat the oven to 425°F.
Mix together the Loprofin Mix and the yeast into a large bowl, stir in the oil and water.
Beat the mixture for 1 minute, if using an electric hand mixer, or 2–3 minutes if using a wooden spoon, until the batter is smooth and glossy.
Stir in the flavorings if desired.
Divide the mixture between the prepared tins, smooth the surface and carefully brush with oil to seal the batter and prevent it drying out whilst rising.
Loosely cover the pans with cling wrap and put in a warm place to rise. This should take about 30 minutes, until the batter has doubled in size.
Remove the cling wrap and bake the bread in a preheated oven (425°F) for approximately 25 minutes, until golden brown.
Cool on a wire rack.

Nutrition Information (per serving):

Calories: 170
Protein 0.26 g
Phe: 10 mg

Anyways, that is all I have for now.

Until next time,
Phe

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A Little Look into My Mind Lately

2012-08-07T13:55:00.002-07:00

It has been a while since I have updated you all. I'm sorry for that. This last month has been completely CRAZY!! There was a trip to Texas for a wedding, that trip lasted a week. I helped at my church for Vacation Bible School, I went to Teen church camp for a few days, my father's birthday party along with my grandparents anniversary party. Like I said, this has been a very busy month.

Even though this has been a very busy time, I still cannot get baby off my brain. I guess I have come to the point in my life where I think I'm ready. It doesn't matter how much I want to become a mommy right now, I can't because I have to get my diet on track first. I am so close to be getting my levels right!!

I do feel a bit discouraged though. I recently joined a group on Facebook for women with PKU who want to be, who are, and who have been pregnant. I look on the page and I see women who say they are going back on their "precon," or preconception diet. When they say that, they also share their current levels, usually really close to mine. A week or two later, they post saying that their levels have gone down dramatically and are on track to getting pregnant. Me, however, I have been working on my levels since the end of January.

I know it's an ongoing process and it's easier for some people. I just wish it was that easy for me.

Until Next time,
Phe

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Cheating

2012-06-25T20:48:00.001-07:00

Have you ever wanted to lose a few pounds? Well, if you have you started a diet. You watch what you eat, count calories, cut out carbs, or something else. It gets stressful and sometimes you want to cheat on your diet. It's normal right?

Everyone on any kind of diet has the temptation to cheat. It's the same situation with someone with PKU. Someone on a regular diet just has to stay on their diet longer, that's the only consequence they get. People on the PKU diet have quite a few consequences, and sometimes we aren't the only ones who get punished.

I can't speak for everyone with PKU when it comes to the symptoms we get. I know when I have had too much protein I dont get any symptoms until the next day. I get VERY moody, I get so tired from doing nothing at all, and I just feel foggy. Like I said, everyone has different symptoms.

Some people get cravings for certain things. I know of someone who craves a Whopper from Burger King. Other people crave peanuts. I know I crave Velveeta Mac & Cheese. Weird huh?

Anyways, that's a ll I have for you now.

Unitl next time,
Phe

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Only Human

2012-06-12T20:00:00.000-07:00

Sometimes in life, people get so determined to do something that when they slip up they are very angry with themselves. It's that way with many to all goals people set for themselves. It's no different for people with PKU.

Just because people with PKU aren't supposed to have a certain type, like bacon, doesn't mean we haven't tried it. Well for some people, it instantly becomes their favorite food. Well, when your favorite food is something you are not supposed to have it makes it harder to stay away from. It's like a dog. Dogs love chocolate, even though they aren't supposed to have it.

Now, I know it is hard to resist high protein foods when they happen to be your favorite. It becomes easier to slip up. We have to realize that we are only human. We will make mistakes, just like everyone else. It's easy to get mad at yourselves for your mistakes, but that isn't going to make them go away. You just have to jump back up and face it again. Everything makes you stronger.

This is mostly to help myself. I have been facing this a lot lately. Not being on the low protein diet made it easy for high protein foods to become my favorite. Because of that I have been finding it hard to stay away from temptations of the high protein foods.

Just remember to stay positive.

Until Next Time,
Phe

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Day By Day

2012-06-01T23:39:00.002-07:00

I want to thank you all for supporting me, whether it's by following the page and reading my posts, commenting on the Facebook page, or being here for me in my daily life. I have a wonderful support system that includes my family, my friends, my doctors, and many more. I never realized how many people read my blog. I have people at work talking to me about it, my hair dresser, random people adding me on Facebook because they have questions or comments about the blog. It's really nice to see everyone getting something from this page.

Well, make sure the support continues, not just for me, but for anyone else you know who has PKU. There could be things that they are struggling with that they can't explain. PKU doesn't just affect what we can eat, it effects a lot of things in life. Too much protein causes mood changes that we can't explain. I know I have said this before, but I keep saying it because it is important to remember. Sometimes I am extremely grumpy with my husband, he hasn't done anything to upset me. No matter how hard I try, I can't contain it.

It's not only mood changes that PKU effects. There have been many studies to prove that PKU patients with a high protein level have a decreased IQ. This, by no means, means that someone with PKU is "slow" or dumb. It just means that their IQ isn't as high as it could be.

Another thing, something I hadn't shared with anyone until recently. PKU, also, effects the memory. Now, that could mean plenty of things. Some people have a hard time remembering what was said in a conversation the other day, or what they were talking about in the middle of speaking. Others have a hard time remembering a lot bigger things. For example, I don't remember a lot of things from growing up. I can't always bring them to recollection, so if someone is talking about a situation that I don't remember, I just agree with them. I'm too prideful and embarrassed to voice some of my problems. Sometimes it's hard to remember appointments, dates, what day of the week it is. I don't mean just for a moment. I mean it could take a while to remember, some have to look at calenders and planners to make sure.

I know I don't want to be treated differently because of these things, that is why I have never wanted to tell anyone about some of the struggles that comes along with PKU. Through all this, I want people with PKU to know that this is normal, but you should still talk to your doctor about it because it can be helped. I want to make those who know someone with PKU are aware of some of the things we struggle with.

That's all for now.

Until Next Time,
Phe

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A Little Update on Me

2012-05-29T23:31:00.002-07:00

In some of my posts, I have mentioned that I am trying to go back on the PKU diet. I have been struggling a lot lately, especially with my small amounts of protein and drinking my formula consistently. I have always struggled with keeping my protein levels down, even when I was younger and on the diet. It's no different now.

I recently got a package in the mail, opened it, and discovered my formula! I was really excited to finally have it. I opened it, mixed some up, and drank it. I soon realized the taste had not changed. I can get past a gross taste as long as it doesn't smell gross, too. Thank goodness it smells like real strawberries. :) I still feel sick to my stomach for about 20 minutes after I drink my formula. I am not really sure why that is, but I can live through that as well. The only thing I have really been having trouble with is keeping my natural protein to a minimum. For so long I have had free reign on anything I wanted to eat. I never counted how much protein was in anything... Well, since going back on the diet means limiting my protein, I count it now.

I am only allotted 12 grams of protein a day. That isn't much considering how much protein is in vegetables even.

Potatoes : 2.1 Grams of protein
Broccoli : 4.2 grams
Banana : 1.2 grams
Orange : 1.1 grams
Spinach : 2.8 grams
Brussels Sprouts : 3 grams
Cauliflower : 3 grams
Sweet Onion : 2 grams

You get the point. I have to eat very carefully in order to not go over my daily amount. It's challenging to keep track and still eat right. I'm always looking for recipes for meals that have a very small amount of protein. They are out there... Most of them I have already tried and am getting tired of. I'm trying more and more recipes from my old PKU cookbook. I haven't tried too many but I will let you know when I have found some good ones.

Anyways, here is another recipe from my personal PKU cookbook.

Vegetable Pot Pie

(Dough Recipe Below) 

Basic Vegetable Mixture:

1 cup diced potatoes

1 cup diced or sliced carrots

1/4 cup chopped onion

Vegetable Option 1

1 cup quartered fresh mushrooms or 1/2 cup sliced canned mushrooms  

2 tablespoons frozen peas

Vegetable Option 2

1 cup fresh or frozen cut green beans

1/3 cup chopped celery

Gravy

2 Tablespoons cornstarch

1 pkg G. Washington's golden seasoning and Broth, or seasoning of your choice

1 3/4 cups water 

Prepare pastry and set aside. Prepare vegetables from Basic Vegetable Mixture, then prepare vegetables from either of the two vegetable options. As all vegetables are prepared, dividing equally among 8 individual casserole dishes. Sprinkle with salt and pepper as desired.

To prepare Gravy, in a small saucepan mix cornstarch and broth powder. Add a few tablespoons of water and mix to a paste, then add remainder of water; bring to a boil, stirring constantly until thickened. Pour 3 tablespoons of gravy over vegetables in each casserole, just enough to cover vegetables. Cut pastry into rounds to fit casserole dish; place a round of pastry on each pie. Bake at 400 degrees for 12 to 15 minutes. 

Yields: 8 Pot pies

Storage Tip:

Pot pies freeze well, either baked or unbaked. Thaw and reheat in microwave oven, or bake as directed.

              Phenylalanine (mg)     Protein (gm)        Calories

Using Option 1

Per recipe        309                8.6                     231

Per Pie           39                 1.1                      29

(not including crust)

Using Option 2    294                 7.3                    226

Per Pie           37                  0.9                     28  (not including crust)   

Pot Pie Dough

1 1/2 cups Wheat Starch

1/2 teaspoon salt

1/2 cup Butter flavored Crisco

1 tablespoon water

2 1/2 tablespoons light Karo corn syrup

Combine wheat starch and salt in a mixing bowl. Cut in shortening with a pastry blender, fork, or 2 knives, until mixture resembles coarse bread crumbs; sprinkle water over and blend with a fork. Dribble syrup over and continue mixing with a fork. Dough will be moist. Gather dough into a ball, adding wheat starch to your hands if sticky. toll out onto surface dusted with wheat starch, or pat out into desired shape.

Makes enough dough for one of the following:

10 pot pies

8 small turnovers

4 large turnovers

four 4-inch diameter pie pans

               Phenylalanine (mg)  Protein (gm)        Calories

Per recipe          29             0.5                     1696

Per pot pie          3              -                      170

Per small turnover   4             0.1                     212

Per large turnover

or 4-inch pie pan    7             0.1                     424

I hope you enjoy that!

Until Next Time,

Phe

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In Need of Cooperation!

2012-05-12T00:01:00.001-07:00

I know it has been a while since we have talked! I have had a somewhat crazy schedule lately. On top of being busy, I am still waiting for my order of formula to get here. I'm not a very patient person to begin with... but let me tell you, my body isn't very patient either. Have you ever had those times when you were SO tired you wanted to fall asleep, but you still had things to get done? That has become an everyday thing with me lately.

When I last saw my Metabolic Specialist, I have been consuming 12 grams of protein a day. That is what Dr. Huntington thought my body needs in order to kick it into gear. I have no problem with that. I mean, sure, it's challenging at times, but considering I went from eating close to whatever I want to eating 12 grams of protein a day, I'd say I am doing pretty well.

Anyways, that's not the point. A woman my age should be consuming 46 grams of protein a day. But since I have PKU and my body can't break down that much protein very well, I need some help from medical protein. I get my medical protein from a drink that is most known as, formula. Like I said, I have no problem cutting myself down to 12 grams of protein a day, but I haven't received my order of formula, yet. Therefore, I run out of energy quickly, and get sleepy.

With only taking in a little amount of protein, my body likes to tell me I'm hungry. When I don't eat protein right away, I get sleepy. It is now to the point where, I wake up in the morning, take a shower, get dressed and ready for the day then I'm ready for a nap. My body has gone into panic mode, it thinks I am starving myself, even though I'm not. So, I tend to take a nap everyday that I can squeeze one in.

I'm so excited to get my formula, so I can stop feeling so tired and hungry all the time, and not have to worry about when I can fit in a nap.

PKU Friendly Monkey Bread

2 T sugar
1 ½ t cinnamon
3 ½ C Mixquick
1/3 C coffee rich
1/3 C water
2 T sugar
2 T margarine
1 t vanilla
1 t egg replacer, mixed w/ 2 T water (enough egg replacer and water to equal 1 egg)

Heat oven to 375. Spray a 9x5x3 loaf pan. Mix 2 T sugar and the cinnamon. Stir remaining ingredients until soft dough forms. Pinch off 1 ½ inch pieces of dough; roll into cinnamon sugar mixture and place in pan. Bake 20 – 25 minutes or until golden. Let stand in pan about 10 minutes and remove to wire rack. Drizzle with glaze and cut into slices. Serve warm or rewarmed in microwave.
Powered Sugar Glaze
½ C powdered sugar
2 -3 t water

Yield: 12 slices
Phe per recipe: app. 19mg
Phe per slice: app 2mg

Thanks for reading!!

Until Next Time,
PHE

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History Lesson!

2012-04-20T16:34:00.000-07:00

Something a lot of people have asked me is, "When was PKU discovered?" "Is it a newly found condition?" So I have found some history on PKU for everyone. Get on your glasses and get ready to learn. :)

1934 PKU Discovered-

PKU was discovered in 1934, when a doctor in Norway, named Asbjorn Folling, noticed that several mentally retarded patients had a strange odor. He figured out that it was from something called "phenylacetic acid." The patients' urine also had a very high level of a chemical called "phenylketone." That is how the disease got its name, phenylketon-uria.

1950 The Child Who Never Grew-

Pearl Buck, best known for her Pulitzer-Prize winning The Good Earth, delighted in the birth of her daughter Carol in 1920, and was heartbroken when she failed to develop normally. Buck was unable to discover what was wrong with Carol, who grew up mentally retarded as a result of PKU. She published The Child Who Never Grew in 1950 with the hope that her experience could help others

1951 First Supplement-
In 1951, a German professor, Horst Bickel, developed the first PKU formula. The unflavored protein drink provided many amino acids without Phe. For the first time, PKU patients could get most of the nutrition they needed while keeping Phe levels low.

1958 Simple Test Developed-
Robert Guthrie developed a way to test for high Phe in newborns using a drop of blood. The test was fast, simple and inexpensive, unlike earlier tests.

1966 PKU Newborn Screening-
In 1966, hospitals across the country started using the Guthrie test to screen all infants for PKU. By identifying newborns with PKU at birth and managing care from the beginning, mental retardation could at last be avoided.

2007 First Drug Therapy for PKU-
KUVAN Tablets became the first drug approved for PKU

There is a little history for you.

Until Next Time,
Phe

P.S. Now is the time of year that the March For Dimes is happening!! Nationwide there are walks being coordinated to provide medical help to babies born premature!! Learn more and Donate Now!!
http://www.marchforbabies.org/personal_page.asp?pp=4364044&ct=4&w=5545908&u=LauraRG

Follow Me on Facebook: http://www.facebook.com/TheDailyStrugglesOfPKU

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If you ever have any question you can email me! lauragoode@hotmail.com

Is It Nap Time Yet?

2012-04-17T00:20:00.002-07:00

You know that time of day, in the middle of the afternoon when you get sleepy. You think, "I could sure use a nap right now." What do you use to wake yourself up? Some people end up taking naps, others grab a cup of coffee or an energy drink, but someone with PKU grabs their formula.

A lot of people don't understand fully what PKU formula does for the body. Of course, it gives me ( and others with PKU) the daily vitamins and proteins that we need, but what does it help improve? Well, someone with PKU must depend on their formula as much as a caffine addict depends on their coffee.

Someone gets tired when they haven't had enough to eat, well it's because the body uses up all the protein that it has been supplied with. Someone like me, with PKU, can't have protein, so I get tired faster than someone without PKU. When I get really tired I should drink some formula to help my body get everything it needs to operate.

My husband, Chipper, actually noticed that I sleep a lot more than him. I am still tired even after a full night's rest, but that's because for the last few years I haven't had my formula to drink. Because my body didn't have the protein it needed to function, I would end up sleeping a lot. But soon that won't be a problem, since I am getting back on the diet I will have everything on hand that I need to fix that problem when it arises.

On another note, I have one of my favorite snack recipes from when I was little!!

Low Pro Snack Mix

A crunchy munchy "low" snack, very similar to standard "party Mix" in flavor.

1/2 cup(14 grams) Rice Chex Cereal

1/2 cup (14 grams) Corn Chex cereal

3 cups (108 grams) 3/8 inch Low Pro Croutons (recipe to follow soon)

1/3 cup Margarine or Butter

1 T. Worcestershire sauce

1/4 t. salt

1/2 t. chili powder

In a 13x9-inch baking pan, mix together cereal and croutons. Melt butter and mix with Worcestershire sauce, salt, and chili powder; pour over cereal and croutons and toss to coat. Spread in pan fairly evenly. Bake at 250 degree F for 45 minutes, stirring several times during baking.

Yield: 4 cups (260grams)

Phenylalanine (mg) Protein (gm) Calories

Per recipe 156 4.0 1060

Per 1/2 cup serving 20 0.5 132

Enjoy the recipe!!!!

Until next time,
Phe

P.S. Now is the time of year that the March For Dimes is happening!! Nationwide there are walks being coordinated to provide medical help to babies born premature!! Learn more and Donate Now!!
http://www.marchforbabies.org/personal_page.asp?pp=4364044&ct=4&w=5545908&u=LauraRG

Follow Me on Facebook: http://www.facebook.com/TheDailyStrugglesOfPKU

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If you ever have any question you can email me! lauragoode@hotmail.com

Did You Take Your Vitamins Today?

2012-04-10T20:08:00.002-07:00

Any doctor will tell you that every human should be taking a daily vitamin, eating healthy, be getting in a daily exercise. As adults, we get busy, some of us push aside the healthy food for not so healthy. Some of us don't make time for a daily exercise, and others forget to take their vitamins.And some forget all three.Well, that should never happen, especially for people who have disorders, like PKU.

Now, not every one with PKU is prescribed or advised to take extra vitamins. But, I was told by my Metabolic Specialist that it would help me a great deal in my daily activities. Since I live on the coast where the sun is known to make an appearance about once a month, I was told I should take a Vitamin D everyday. Vitamin D is the one you naturally absorb from the sun, it regulates the concentration of calcium and phosphate in the blood stream and promoting the healthy growth and remodeling of bone.

I was, also, told I should be taking Vitamin B12. It's key role is the normal functioning of the brain and nervous system, and for the formation of blood. Since, having too much protein can affect the brain this is a key vitamin. It's important to take a multi vitamin along all the others.

I have noticed since I started this new vitamin regimen, I have so much more energy during the day. I also, have noticed that I am happier (I have no idea if that is in anyway related to the new vitamins, but I thought it should be shared). So far I feel great!!

On another note, I have to confess that I have been procrastinating since I saw my Metabolic Specialist. I just got around to ordering my formula today. I feel bad for doing everything else the doctor told me to do except that, only because that is one of the most important parts of the PKU diet. But now it's ordered.

Before I sign off.... Here is another PKU friendly recipe!

Easy Drop Danishes

2 c. (200g) Cambrooke Foods MixQuick
1/4 c. softened butter or margarine
2 TB. sugar
1/3 c. Rich's Coffee Rich mixed with 1/3 C water
1/4 c. canned pie filling (strawberry, lemon, or cherry)

Glaze:
2/3 C powdered sugar
1/4 tsp. vanilla
1Tbl. warm water

Heat oven to 425 degrees. Lightly coat cookie sheet with cooking spray. Stir MixQuick, margarine, and sugar in medium bowl until crumbly. Stir in Coffee Rich and water until dough forms, beating about 15 strokes. Drop dough by well-rounded tablespoonfuls about 2 inches apart onto cookie sheet. Make a shallow well in center of each with back of spoon or by wetting fingers and smoothing dough; fill with 1-2 tsp. pie filling. Bake about 10 min. or until golden. Mix together glaze ingredients. While warm, drizzle with glaze (or other commercial frosting that has been softened in microwave for 45 seconds). Makes 8 danishes.
per recipe - 50mg PHE, 1.6 g. Protein, Calories is 1695
per danish - 6 mg PHE, 0.2 g Protein, calories 212
You might could do a cream cheese filling with wild berry cream cheese....

I hope you enjoy!!

Until next time,
Phe

P.S. Now is the time of year that the March For Dimes is happening!! Nationwide there are walks being coordinated to provide medical help to babies born premature!! Learn more and Donate Now!!
http://www.marchforbabies.org/personal_page.asp?pp=4364044&ct=4&w=5545908&u=LauraRG

Follow Me on Facebook: http://www.facebook.com/TheDailyStrugglesOfPKU

Follow me on Twitter: Phe_ThePKUGirl

If you ever have any question you can email me! lauragoode@hotmail.com

PKU Recipes!!

2012-03-30T20:26:00.002-07:00

For those of you who don't have PKU, have you ever wanted to try some recipes of low protein food that people with PKU eat all the time? For those of you who have PKU, have you ever wanted to share your favorite recipes? Have you wondered what others who have PKU like to eat? Periodically, I am going to start posting recipes. I am, also, interested in hearing your favorite recipes!! I want you to find some of your favorite recipes and email them to me! You can find my personal email at the end of this post.

This is an odd recipe that I found. I am willing to try it even though it sounds funny.

SPRITE POTATOES
1 medium onion, chopped
1/2 lb. bacon, chopped
Cook in big pot/skillet until onion is translucent and bacon is starting to crisp. -*STRAIN BACON MEAT- leaving only grease and onions in pot.
Then add:(I usually use my food processor to slice the potatoes and carrots)
5-6 potatoes, peeled and sliced thin (more or less depending on how much you want)
9-10 baby carrots sliced thin
Stir and season to taste with the following:
seasoned salt
onion salt
garlic salt
salt
pepper
Add:1-2 cans sprite, enough to just cover the potatoes.
Cover and bring to a boil, simmer for about 15-20 minutes or until potatoes and carrots are tender and most of the liquid has reduced.
Cover generously with PKU cheese shreds and cook about 3-5 more minutes - or go without the cheese at all
*Sometimes we add a little more sprite to keep them from drying out before the potatoes and carrots are all the way done. We also leave a little liquid in the bottom when we put the cheese on so it's not to dry).

Sounds interesting, huh? If you try it tell me what you think!

Until next time,
Phe

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