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
Sunday, December 23, 2012
Friday, November 16, 2012
Kuvan Soon??
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Sunday, October 21, 2012
Losing Weight
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
Protein 0.26 g
Phe: 10 mg
Anyways, that is all I have for now.
Until next time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
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
Don't forget to check out these web pages!!
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Tuesday, August 7, 2012
A Little Look into My Mind Lately
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Monday, June 25, 2012
Cheating
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Tuesday, June 12, 2012
Only Human
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Friday, June 1, 2012
Day By Day
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Tuesday, May 29, 2012
A Little Update on Me
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.
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
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Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Saturday, May 12, 2012
In Need of Cooperation!
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
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
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Friday, April 20, 2012
History Lesson!
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. :)
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
Follow me on Twitter: Phe_ThePKUGirl
If you ever have any question you can email me! lauragoode@hotmail.com
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 others1951 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
Follow me on Twitter: Phe_ThePKUGirl
If you ever have any question you can email me! lauragoode@hotmail.com
Tuesday, April 17, 2012
Is It Nap Time Yet?
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
Follow me on Twitter: Phe_ThePKUGirl
If you ever have any question you can email me! lauragoode@hotmail.com
Tuesday, April 10, 2012
Did You Take Your Vitamins Today?
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!
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
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
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
Friday, March 30, 2012
PKU Recipes!!
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
Follow on Facebook :
http://www.facebook.com/TheDailyStrugglesOfPKU?ref=tn_tnmn
Follow on Twitter:
PHE_ThePKUGirl
Email at me:
lauragoode@hotmail.com
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
Follow on Facebook :
http://www.facebook.com/TheDailyStrugglesOfPKU?ref=tn_tnmn
Follow on Twitter:
PHE_ThePKUGirl
Email at me:
lauragoode@hotmail.com
Sunday, March 25, 2012
Low Pro Equals No Fun
As many of you know, I have been trying to go back on my low
protein (or low pro) diet. I told you how my doctor gave me come low
protein and medical protein food. I thought it would be just like the
food that I have been eating, boy was I wrong.
Now before I start I want to say, this food is not the most disgusting thing I have ever tasted, but pretty close. I started out trying the sports drink first. It was supposed to be like Gatorade and it had medical protein in it. Needless to say it wasn't tasty. It wasn't too bad except it had a metallic after taste, so I mixed it with Sprite, hoping the carbonation would be more prominent. It tasted fine after that and then it made me sick. My body reacted to it as if it were poison. NOT GOOD.
After that, I was nervous to try anything else for a few weeks. But I, finally, brought myself to try the Tweeks. They are supposed to be the PKU equivalent to chicken nuggets. So, my husband and I prepared them as the box directed. They didn't seem too bad, but nothing like chicken nuggets. I was too nervous to try it first, so my husband did. He did a very good job at keeping a straight face. After finally biting into it I realized how good of an actor he was. It looked like a chicken nugget, but was filled with mushroom paste. I like mushrooms, but they were nasty.
I waited awhile longer and then my husband and I sat down one night to test out the formulas. I was nervous for that because that was the reason I stopped the diet in the first place, my formula made me sick. There were some really nasty ones, others weren't too bad. After trying them all, we realized some of them were expired, but there were no side effects. But as it stands right now I am probably going to order the formula I use to have, only because it's a safer choice.
Other than those, I haven't tried anything else. From the list of medical foods and drinks that I told you about a couple of weeks ago, I have a lot more to try. I will be sure to keep you updated on how everything is. All I can say is, parents with kids who have PKU.... Make An Appointment To Taste Everything Yourself Before Ordering It For Your Child!!!!!
Until next time,
Phe
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Now before I start I want to say, this food is not the most disgusting thing I have ever tasted, but pretty close. I started out trying the sports drink first. It was supposed to be like Gatorade and it had medical protein in it. Needless to say it wasn't tasty. It wasn't too bad except it had a metallic after taste, so I mixed it with Sprite, hoping the carbonation would be more prominent. It tasted fine after that and then it made me sick. My body reacted to it as if it were poison. NOT GOOD.
After that, I was nervous to try anything else for a few weeks. But I, finally, brought myself to try the Tweeks. They are supposed to be the PKU equivalent to chicken nuggets. So, my husband and I prepared them as the box directed. They didn't seem too bad, but nothing like chicken nuggets. I was too nervous to try it first, so my husband did. He did a very good job at keeping a straight face. After finally biting into it I realized how good of an actor he was. It looked like a chicken nugget, but was filled with mushroom paste. I like mushrooms, but they were nasty.
I waited awhile longer and then my husband and I sat down one night to test out the formulas. I was nervous for that because that was the reason I stopped the diet in the first place, my formula made me sick. There were some really nasty ones, others weren't too bad. After trying them all, we realized some of them were expired, but there were no side effects. But as it stands right now I am probably going to order the formula I use to have, only because it's a safer choice.
Other than those, I haven't tried anything else. From the list of medical foods and drinks that I told you about a couple of weeks ago, I have a lot more to try. I will be sure to keep you updated on how everything is. All I can say is, parents with kids who have PKU.... Make An Appointment To Taste Everything Yourself Before Ordering It For Your Child!!!!!
Until next time,
Phe
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Saturday, March 17, 2012
My Story
I have noticed that my last few posts have been very impersonal. I
was basically giving lessons like I was a teacher. I want my followers
to know me in a more personal way. I'm going to tell you in this post
of how I got to where I am today with my PKU.
I know I have mentioned in at least one post in the past, my name is Laura. I am 20 years old, married, and as I'm sure you have figured by now, I have PKU. Well, since the introduction is over, let's start when I was younger....
I was pretty good with my PKU diet when I was little, but I had no choice. My mom, dad, and grandparents were very good at keeping me on the right track. I never really enjoyed what PKU entailed. There was the formula, the blood tests, limited food choices, and frequent doctor's appointments. But back then the only thing that I didn't realize was the limited food choices. My parents and grandparents took care of that part.
The part that was the hardest for me when I was younger was the weekly blood tests. No one likes to be poked and having an ever sore finger. Well as I grew into a pre-teen, the weekly blood tests turned into monthly, annual , and eventually nonexistent blood tests. I hated those tests with a passion, and looking back on it, they weren't that bad. But as time progressed, the blood tests were the last thing on my mind. My new struggle was with my formula. It was so harsh on my stomach, and didn't taste very pleasant either. So with that, it wasn't hard to forget to drink it everyday.
As soon as I was old enough to start playing sports, I did so. My 7th grade year, I joined the basketball and track team. When I entered 8th grade, I threw volleyball into the mix. Back then I thought I was very busy, then I realized what busy meant when I got into high school. In high school, I played volleyball and ran track. I was also on two cheerleading teams (the varsity team and the competition team). Add in school and work, it isn't hard to imagine that I forgot to drink my formula, and breathe at times.
I was in high school when my diet took a back seat to everything else I had on my plate. I have mentioned in high school, I started having skin problems (eczema) and mood swings. I thought the mood swings were normal for a teenage girl, and I thought I just had really dry skin. I never realized until recently that that was signs I had been eating too much protein
.
In my senior year of high school, I met the man I know as my husband now, Chipper. We started dating and that added into my busy schedule, I also started attending church three times a week. The fall after I graduated, I moved and began attending college. Since I moved away from Chipper, I was traveling 180 miles (round trip) at least once a week to see him.
Shortly after my first year of college, summer of 2010, Chipper asked my to marry him. Two weeks after that, I had a surgery that put me out of a job for a while. I started planning my wedding, and on February 26th, 2011 Chipper and I were married. Directly after the wedding we moved 165 miles away from the town that we both knew as home for as long as we can remember.
Marriage is quite an adjustment for a couple, especially if they haven't lived together before had, like Chipper and I. I forgot all about my PKU, well as much as one can. I always remembered what I could and couldn't have. But formula, blood tests and all that never once crossed my mind. One day, my husband mentioned something about my PKU effecting a baby if I got pregnant. I had really never thought too much about that. Thank the Lord he had said something.
I started researching what high protein levels could do to an unborn child. I cried when I found some answers. Not too long after that, I started this blog. This, also, helped me to open my eyes to what damage I could be doing to myself, and if I wasn't careful, a child. That's when I called my Metabolic Specialist.
Now, with the support of my wonderful husband, loving parents and in-laws, my grandparents, and Dr. Kathleen Huntington, I am working very hard to get my diet under control. I want to start preparing my body for when Chipper and I decide to start our family.
This blog has helped me so much, so far. It doesn't really matter if anyone reads this (of course I would love it if someone was reading) it still helps me to feel accountable to my readers. Who am I to tell you that people with PKU should stay on the diet for the duration of their life, if I can't set a good example.
Well, thank you for reading and now you know more about me. :)
Until next time,
Phe
Follow me on Twitter: Phe_ThePKUGirl
I know I have mentioned in at least one post in the past, my name is Laura. I am 20 years old, married, and as I'm sure you have figured by now, I have PKU. Well, since the introduction is over, let's start when I was younger....
I was pretty good with my PKU diet when I was little, but I had no choice. My mom, dad, and grandparents were very good at keeping me on the right track. I never really enjoyed what PKU entailed. There was the formula, the blood tests, limited food choices, and frequent doctor's appointments. But back then the only thing that I didn't realize was the limited food choices. My parents and grandparents took care of that part.
The part that was the hardest for me when I was younger was the weekly blood tests. No one likes to be poked and having an ever sore finger. Well as I grew into a pre-teen, the weekly blood tests turned into monthly, annual , and eventually nonexistent blood tests. I hated those tests with a passion, and looking back on it, they weren't that bad. But as time progressed, the blood tests were the last thing on my mind. My new struggle was with my formula. It was so harsh on my stomach, and didn't taste very pleasant either. So with that, it wasn't hard to forget to drink it everyday.
As soon as I was old enough to start playing sports, I did so. My 7th grade year, I joined the basketball and track team. When I entered 8th grade, I threw volleyball into the mix. Back then I thought I was very busy, then I realized what busy meant when I got into high school. In high school, I played volleyball and ran track. I was also on two cheerleading teams (the varsity team and the competition team). Add in school and work, it isn't hard to imagine that I forgot to drink my formula, and breathe at times.
I was in high school when my diet took a back seat to everything else I had on my plate. I have mentioned in high school, I started having skin problems (eczema) and mood swings. I thought the mood swings were normal for a teenage girl, and I thought I just had really dry skin. I never realized until recently that that was signs I had been eating too much protein
.
In my senior year of high school, I met the man I know as my husband now, Chipper. We started dating and that added into my busy schedule, I also started attending church three times a week. The fall after I graduated, I moved and began attending college. Since I moved away from Chipper, I was traveling 180 miles (round trip) at least once a week to see him.
Shortly after my first year of college, summer of 2010, Chipper asked my to marry him. Two weeks after that, I had a surgery that put me out of a job for a while. I started planning my wedding, and on February 26th, 2011 Chipper and I were married. Directly after the wedding we moved 165 miles away from the town that we both knew as home for as long as we can remember.
Marriage is quite an adjustment for a couple, especially if they haven't lived together before had, like Chipper and I. I forgot all about my PKU, well as much as one can. I always remembered what I could and couldn't have. But formula, blood tests and all that never once crossed my mind. One day, my husband mentioned something about my PKU effecting a baby if I got pregnant. I had really never thought too much about that. Thank the Lord he had said something.
I started researching what high protein levels could do to an unborn child. I cried when I found some answers. Not too long after that, I started this blog. This, also, helped me to open my eyes to what damage I could be doing to myself, and if I wasn't careful, a child. That's when I called my Metabolic Specialist.
Now, with the support of my wonderful husband, loving parents and in-laws, my grandparents, and Dr. Kathleen Huntington, I am working very hard to get my diet under control. I want to start preparing my body for when Chipper and I decide to start our family.
This blog has helped me so much, so far. It doesn't really matter if anyone reads this (of course I would love it if someone was reading) it still helps me to feel accountable to my readers. Who am I to tell you that people with PKU should stay on the diet for the duration of their life, if I can't set a good example.
Well, thank you for reading and now you know more about me. :)
Until next time,
Phe
Follow me on Twitter: Phe_ThePKUGirl
Friday, March 9, 2012
Feeling Foggy?
Have you ever woken up in the morning and felt like you were going
to have an "off day"? You can't seem to think clearly enough to do
anything right? Well, that's an all too common thing for someone with
PKU who isn't on the diet.
PKU and tons of protein don't mix. When too much protein is eaten it can effect the brain. It effects the front lobe, which is responsible for all the cognitive functions. The protein makes it hard to focus on something for too long, and makes it hard to think clearly at all.
It's important to know how much protein you can handle. Everyone is different when it comes to this, just like it is when someone has diabetes. That is determined by how well the enzymes in the liver work. Like I have said before, some people with PKU can only have as little as 2 grams of protein a day, all the way up to 16 grams. Whatever the limit, if they go over it can cause lots of side effects.
One of those is feeling foggy. When someone with PKU has too much protein it makes them have to focus really hard to do even the simplest tasks. Even finishing a conversation without forgetting what the topic was, is a challenge.
Another side effect is being overly grumpy or depressed. It's so easy to get mad or take anything the wrong way. I have to say, this one is the one I usually suffer from. Well, I should say everyone around me suffers. All sorts of things can happen when someone with PKU eats too much protein.
If you know anyone with PKU, and you notice they are having an off day, this could be the reason why. And for those who have PKU, be conscious of your protein intake, if you don't, the people around you can and probably will face the consequences.
Until next time,
Phe
Follow me on Twitter!! Phe_ThePKUGirl
PKU and tons of protein don't mix. When too much protein is eaten it can effect the brain. It effects the front lobe, which is responsible for all the cognitive functions. The protein makes it hard to focus on something for too long, and makes it hard to think clearly at all.
It's important to know how much protein you can handle. Everyone is different when it comes to this, just like it is when someone has diabetes. That is determined by how well the enzymes in the liver work. Like I have said before, some people with PKU can only have as little as 2 grams of protein a day, all the way up to 16 grams. Whatever the limit, if they go over it can cause lots of side effects.
One of those is feeling foggy. When someone with PKU has too much protein it makes them have to focus really hard to do even the simplest tasks. Even finishing a conversation without forgetting what the topic was, is a challenge.
Another side effect is being overly grumpy or depressed. It's so easy to get mad or take anything the wrong way. I have to say, this one is the one I usually suffer from. Well, I should say everyone around me suffers. All sorts of things can happen when someone with PKU eats too much protein.
If you know anyone with PKU, and you notice they are having an off day, this could be the reason why. And for those who have PKU, be conscious of your protein intake, if you don't, the people around you can and probably will face the consequences.
Until next time,
Phe
Follow me on Twitter!! Phe_ThePKUGirl
Wednesday, February 22, 2012
Change Is Good
First off, I want to say I am sorry for not having posted lately. As
many of you know, I had an appointment with my metabolic specialist on
Tuesday, February 7th, to talk to her about Kuvan. Turns out Kuvan
wasn't what I had originally thought it was. It doesn't make it so that
I can eat anything I want, it is just like a vitamin (in a way). But
there is still hope that it can make me feel and eat better.
Protein goes into the liver and is broken down into tyrosine and many other amino acids. Well the enzymes that break down the protein in the liver is where Kuvan is meant to help. In someone with PKU, those enzymes are nonexistent or close to it, depending on the patient. I have a mild/ moderate case of PKU which means I do have some of those enzymes.
OK, so having given you a little lesson on that, here is how Kuvan works. It acts like a vitamin in a way that it helps the enzymes that I do have work harder and better. So, basically it improves my protein toleration by a bit but doesn't allow me to totally eat what I want. I still have to drink my formula, but I might not need almost all of my daily protein to be from a medical supplement.
So, everything else in my appointment went well. My labs weren't great, but that was to be expected considering I had been off the diet for a long time. But they were not as bad as we had thought they would be. Instead of having me back in 6 months to get set up for Kuvan (which is what we had discussed in the appointment), after getting my lab results back they want to see me back in 3. I am excited about that.
As part of my appointment, they took me in to the medical food store in OHSU/Dornbecker's Children's Hospital to help me pick out formula. Man, things have definitely changed since the last time I had been up there. There are so many things to choose from now, formula and medical food! For someone with PKU, medical food can allow a lot more freedom with their diet by supplementing some medical food in for high protein foods.
I got to choose between so many things! I got to bring a lot of medical food home to try, some are okay, some not so much. For example, they have these things called Tweekz. They are the PKU alternative for chicken nuggets. My husband and I tried them last night, awful. They taste like mushroom paste coated in bread crumbs, they smell as bad as they taste, too.
I, also, got to bring home some Camburgers, the PKU alternative to a hamburger. I haven't tried those yet but I will let you know how those are. I brought home some low protein pasta, which I had as a kid, delicious. The list goes on with Mac & Cheese Powder, Alfredo Sauce Powder, Cheese and Broccoli Soup, Portobello Mushroom Ravioli, and Cheese Ravioli. I haven't tried any of those, either. But the best thing is, I can order them through email and my insurance pays for it!! :)
When they handed me formula samples I was amazed by how many choices I had. I got a small box that was packed! It had everything from a Gatorade type drink to powder you sprinkle on your food. It had the formula I use to drink in there as well as many others. The only one I have tried is the Gatorade type drink and it made me sick, almost like it was poisoning me. I will let you know about the others I got as I try them.
Well that's all for now. If you have any questions about anything you can email me at: lauragoode@hotmail.com
Or you can comment to any post, or ask (and follow) me on my Twitter : Phe_ThePKUGirl
Until Next Time,
PHE
Protein goes into the liver and is broken down into tyrosine and many other amino acids. Well the enzymes that break down the protein in the liver is where Kuvan is meant to help. In someone with PKU, those enzymes are nonexistent or close to it, depending on the patient. I have a mild/ moderate case of PKU which means I do have some of those enzymes.
OK, so having given you a little lesson on that, here is how Kuvan works. It acts like a vitamin in a way that it helps the enzymes that I do have work harder and better. So, basically it improves my protein toleration by a bit but doesn't allow me to totally eat what I want. I still have to drink my formula, but I might not need almost all of my daily protein to be from a medical supplement.
So, everything else in my appointment went well. My labs weren't great, but that was to be expected considering I had been off the diet for a long time. But they were not as bad as we had thought they would be. Instead of having me back in 6 months to get set up for Kuvan (which is what we had discussed in the appointment), after getting my lab results back they want to see me back in 3. I am excited about that.
As part of my appointment, they took me in to the medical food store in OHSU/Dornbecker's Children's Hospital to help me pick out formula. Man, things have definitely changed since the last time I had been up there. There are so many things to choose from now, formula and medical food! For someone with PKU, medical food can allow a lot more freedom with their diet by supplementing some medical food in for high protein foods.
I got to choose between so many things! I got to bring a lot of medical food home to try, some are okay, some not so much. For example, they have these things called Tweekz. They are the PKU alternative for chicken nuggets. My husband and I tried them last night, awful. They taste like mushroom paste coated in bread crumbs, they smell as bad as they taste, too.
I, also, got to bring home some Camburgers, the PKU alternative to a hamburger. I haven't tried those yet but I will let you know how those are. I brought home some low protein pasta, which I had as a kid, delicious. The list goes on with Mac & Cheese Powder, Alfredo Sauce Powder, Cheese and Broccoli Soup, Portobello Mushroom Ravioli, and Cheese Ravioli. I haven't tried any of those, either. But the best thing is, I can order them through email and my insurance pays for it!! :)
When they handed me formula samples I was amazed by how many choices I had. I got a small box that was packed! It had everything from a Gatorade type drink to powder you sprinkle on your food. It had the formula I use to drink in there as well as many others. The only one I have tried is the Gatorade type drink and it made me sick, almost like it was poisoning me. I will let you know about the others I got as I try them.
Well that's all for now. If you have any questions about anything you can email me at: lauragoode@hotmail.com
Or you can comment to any post, or ask (and follow) me on my Twitter : Phe_ThePKUGirl
Until Next Time,
PHE
Tuesday, January 31, 2012
How Do I Look?
In today's society, there is a definite image that is considered "beautiful." If you look at celebrities, most if not all have tan skin with beautiful hair and eyes. You rarely see one with pale white skin, blond hair, and blue eyes. But someone with PKU has exactly that.
As I have stated in previous posts, people with PKU can't have phenylalanine. Well, phenylalanine is a big part in the ingredients of pigment. So without pigment, people with PKU mostly have blond hair, blue eyes, and pale white skin.
Nowadays, you can change almost anything about yourself. So of course, we have the option to dye our hair. Someone with PKU can do that, but most dyes won't last long in our hair. We have the option to go tanning, but the tan won't last long at all, if it even works. I don't know who would want to change their eye color, but there is colored contacts for that.
As for me, I have a very mild case of PKU which means my body makes a little amount of pigment. So I have brown hair, blue eyes, and pale white skin. I don't mind, that's how God made me. :)
I am thankful for what God gave me and how He made me. Just remember not to take for granted your skin or hair colors. Someone else would love to have them and can't get them. :)
Until next time,
Phe
Now Follow me on Twitter!
Phe_ThePKUGirl
As I have stated in previous posts, people with PKU can't have phenylalanine. Well, phenylalanine is a big part in the ingredients of pigment. So without pigment, people with PKU mostly have blond hair, blue eyes, and pale white skin.
Nowadays, you can change almost anything about yourself. So of course, we have the option to dye our hair. Someone with PKU can do that, but most dyes won't last long in our hair. We have the option to go tanning, but the tan won't last long at all, if it even works. I don't know who would want to change their eye color, but there is colored contacts for that.
As for me, I have a very mild case of PKU which means my body makes a little amount of pigment. So I have brown hair, blue eyes, and pale white skin. I don't mind, that's how God made me. :)
I am thankful for what God gave me and how He made me. Just remember not to take for granted your skin or hair colors. Someone else would love to have them and can't get them. :)
Until next time,
Phe
Now Follow me on Twitter!
Phe_ThePKUGirl
Wednesday, January 18, 2012
A Little Update
So, a few posts ago I told you about the medication, Kuvan. I want to know more about it and see if I would be a good candidate for it. The only way to do that is to see my Metabolic Specialist. The only problem was that it had been 4 to 5 years since I saw her. I didn't remember her phone number or her name ( my mom did all that for me).
Well, it took me a while but I found her name and her phone number. I called and I now have an appointment in February 7th. I am very nervous. She has always been a harsh lady, doesn't sugar coat ANYTHING. I'm hoping I remember her wrong. But if not I know she is going to chew me out for going off diet. But I know I that I deserve a good talking to.
Anyways, that is my update.
Until next time,
Phe
Now Follow me on Twitter!
Phe_ThePKUGirl
Well, it took me a while but I found her name and her phone number. I called and I now have an appointment in February 7th. I am very nervous. She has always been a harsh lady, doesn't sugar coat ANYTHING. I'm hoping I remember her wrong. But if not I know she is going to chew me out for going off diet. But I know I that I deserve a good talking to.
Anyways, that is my update.
Until next time,
Phe
Now Follow me on Twitter!
Phe_ThePKUGirl
Friday, January 13, 2012
Homemade
When you are running late for work and you don't have time for breakfast what do you do? Some people stop at McDonald's or another fast food restaurant. When you get home from a long busy day at work and you don't want to cook what do you do? Some people go out to dinner. That's not so easy for someone with PKU.
Have you ever went to a restaurant and tried to order something with no meat and low protein. Trust me it doesn't leave much on the menu to choose from. Every Sunday night after church my husband's family and some people from the church go to McDonald's for some food and time to fellowship. Everyone gets some sort of meat. As for me it's the same thing every time, french fries and a fruit and walnut salad (I don't eat walnuts).
McDonald's
http://www.mcdonalds.com/us/en/full_menu_explorer.html
Look through the menu and find 8 things someone with PKU can order without having to alter anything. (Not including drinks or desserts)
Burger King
http://www.bk.com/en/us/menu-nutrition/full-menu.html
They have even less to offer than McDonald's.
Wendy's
http://wendys.com/food/Menu.jsp
Not much here either.
Taco Bell
http://www.tacobell.com/food/tacos
Slightly more than the others.
Some people think fast food shouldn't be eaten anyways no matter what kind a hurry you are in. Well, let's take a look at some sit down resturants.
Olive Garden
http://www.olivegarden.com/Menu/Specials/
Red Robin
http://www.redrobin.com/food/
Applebee's
http://www.applebees.com/
Ok, you get the point. It's very hard to go to a restaurant that has a wide variety of low protein foods. I would rather be safe than sorry and make things at home so I know what goes into my food. Next time you go out to eat count the items on the menu and see how many things can be ordered by someone with PKU.
Until next time,
Phe
Have you ever went to a restaurant and tried to order something with no meat and low protein. Trust me it doesn't leave much on the menu to choose from. Every Sunday night after church my husband's family and some people from the church go to McDonald's for some food and time to fellowship. Everyone gets some sort of meat. As for me it's the same thing every time, french fries and a fruit and walnut salad (I don't eat walnuts).
McDonald's
http://www.mcdonalds.com/us/en/full_menu_explorer.html
Look through the menu and find 8 things someone with PKU can order without having to alter anything. (Not including drinks or desserts)
Burger King
http://www.bk.com/en/us/menu-nutrition/full-menu.html
They have even less to offer than McDonald's.
Wendy's
http://wendys.com/food/Menu.jsp
Not much here either.
Taco Bell
http://www.tacobell.com/food/tacos
Slightly more than the others.
Some people think fast food shouldn't be eaten anyways no matter what kind a hurry you are in. Well, let's take a look at some sit down resturants.
Olive Garden
http://www.olivegarden.com/Menu/Specials/
Red Robin
http://www.redrobin.com/food/
Applebee's
http://www.applebees.com/
Ok, you get the point. It's very hard to go to a restaurant that has a wide variety of low protein foods. I would rather be safe than sorry and make things at home so I know what goes into my food. Next time you go out to eat count the items on the menu and see how many things can be ordered by someone with PKU.
Until next time,
Phe
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