August 27, 2015

Baby Abigail

Our daughter was born August 11 around 9:00 pm. I had a wonderful un-medicated birth experience. She was 7 lb 10 oz. She felt so small to me! You forget how small babies are. She is so precious and we are happy she’s here.

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IMG_4046Elena loves her baby sister but definitely also needs a lot of attention from mom in order to not feel left out.

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I am exclusively breastfeeding like I did with Elena. I thought it would be easy because I’ve done it before but it was definitely a challenge for a while. I actually think Abigail has a lip tie which makes it hard for her to get a good latch. Things have improved, but I am looking into treating that.

Her newborn screening came back normal. So that’s nice!

We are doing well and enjoying adjusting to being a family of four!

July 15, 2015

Phe in Sauces

I love sauces. I mean when you can’t eat meat and cheese, flavoring your food can go a long way to make a meal enjoyable.

PheSauceGraphic

As someone with a milder case of PKU, I sometimes don’t even think about the Phe in sauces and seasonings. But I know many people have to count things like this as part of daily life. So I thought it would be interesting to look up the Phe content in all my favorite sauces. It is good to realize that some of them are quite low, and to be aware of the ones that are higher. Growing up I always just assumed I couldn’t have dairy products, but cream cheese and sour cream are much lower than I would have thought, and I like using them in recipes now.

I looked them up in my handy-dandy Low Protein Food List notebook. If you don’t have one I would highly recommend getting one.

Here is what I found. Sorry it’s not in a beautiful table, I could NOT figure out how to do that on wordpress. :/

Phenylalanine content in Common Sauces and Soups:

Ketchup – 7 mg per Tb
Mayonaise  -8 mg per Tb
BBQ sauce – 8 mg/Tb
Salsa – 5 mg/Tb
Enchilada sauce – 4 mg/Tb
Spaghetti sauce – between 50 and 70 mg per 1/2 cup
 —
Ranch dressing – 10 mg per Tb
Catalina – 0 Phe
Italian – 0 Phe
 —
Butter – 6 mg per Tb
Heavy whipping cream – 61 mg per 1/4 cup
Sour cream – 18 mg per Tb
Cream cheese – 56 mg per Tb
Parmesan cheese – 78 mg per Tb
Kikkoma soy sauce 48 mg / 1 Tb
La Choy soy sauce 22 mg/ 1 Tb
Sweet and sour – 0
Coconut milk – 15 mg per Tb
 —
Dry onion soup mix 39 mg per package
Beef broth, prepared – 52 mg per 1/2 cup
Chicken stock prepared – 47 mg per 1/2 cup
Vegetable stock – 0
Tomato soup, prepared – 26 mg per 1/2 cup
Cream of mushroom, prepared – 68 mg per 1/2 cup
Cheddar cheese soup – 125 mg per 1/2 cup
Cheddar cheese broccoli soup –  65 mg per 1/2 cup
Cream style corn – 104 mg 1/2 cup
Some Favorite Recipes of Mine:
Goop
July 2, 2015

It is OK to be Different!

Dealing with the PKU diet as a family

note: this post was originally written for and posted on the Metabolic Disease Foundation’s blog about PKU

One of the biggest concerns I have heard when talking to parents of PKU children, is how their child will deal with being different. Today I will share my perspective, writing to both parents and PKU children, and that is that it’s ok to be different!

Don’t Be Self-conscious

I know what it’s like to have low-protein food at a pizza party, or to simply have to skip out. I know how it feels to be drinking formula at your locker at school, hoping no one is looking at you. Having PKU brings a lot of questions, because food is a big part of social life. It is easy to feel a bit self-conscious when people notice your special food and formula. But something my mom told me when I was younger has always stuck with me: “If you don’t care, they won’t care.” There is really nothing to be embarrassed about. You just eat differently. And these days there a lot of different dietary needs out there. I have found PKU to be a great conversation starter, and I have come to somewhat enjoy being able to talk about myself a little bit when people are curious.

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Be Grateful

As someone with PKU in this generation we are really so blessed to have been diagnosed and treated at a young age. The development of the low-protein diet and the medical formula allow you to get all the nutrition you need and avoid brain damage! That’s huge, so remember how lucky you are, and be proud to explain your diet.

Let Your Child Explain Their Diet

I don’t remember a time when I didn’t know what PKU was and how to explain it. From a very young age I could tell people about my condition, and answer their questions. This gave me a sense of confidence, pride and ownership that I think is very healthy. Parents may want to consider letting their child explain their PKU diet as early as possible, even though it might be easier for you to explain it. This will build their confidence and I think make them more likely to follow it throughout life.

Do Your Own Thing

When you or someone in your family has PKU, you have to figure out what works for you, and do it.

Some parents enjoy cooking and go to great lengths to make low-protein dishes that look almost exactly like normal food – such as a low-protein drumstick on a real bone. That is great for them and really impressive. I would just make sure if your PKU child is very young that they understand that their food is indeed different, and they cannot eat the real thing, as it will cause damage. Also, I would make sure your child doesn’t feel like they need to hide that they have PKU. Again, it is very important for them to have that confidence that PKU is an important but small part of their identity. As someone with PKU, you are unique, and that is wonderful!

In many cases, as another PKU blogger wrote about in his post, A Life of Alternatives, a person with PKU will simply have to eat something completely different than those around them. And that’s ok! I remember times when my youth group was eating hot dogs or something, and I was eating a microwave bowl of Thai Kitchen Spring Onion soup. I liked what I was eating, they liked what they were eating, everybody’s happy!

So my advice to families is to do your best to make a low-protein version of your family meal, but every once in a while, if the PKU meal is totally different, that’s alright. My mom did a great job of making low-protein versions of what our family was having, and more importantly, she always served a fruit and a vegetable at dinner.

Live a Beautiful Life

In the end, having a loving and supportive family is what is going to make the biggest difference in a child’s life – I know, from experience. My family ate dinner together every night growing up and that helped us be really close. As my mom says, “it’s not what’s on your table, but who’s around it that matters.” I may have had days when I was embarrassed about my formula, or upset about my low-protein diet, but those memories simply fade in comparison to all the memories I have of spending time with my family – eating dinner, going on bike rides and nature hikes, and traveling internationally.

Me and my family in Guilin, China

Me and my family in Guilin, China

I have lived with this disorder since birth, and not just in spite of it, but even because of it, I have had a beautiful life. I would like to tell everyone with PKU to embrace your diet as a unique blessing, and reap the benefits. There is nothing that can stop you from having the life you have always wanted.

June 25, 2015

2nd Pregnancy Going Smoothly

I announced on the facebook page a while back that we are expecting baby # 2 this August! Just thought I’d post some pictures and an update here on the blog.

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32 weeks and 5 days today

We are excited to be having another GIRL!

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Good thing my husband loves girls. :) And we hope to have a boy or two in the future.

I have been feeling pretty darn well, really can’t complain. I get a bit tired. And I am all for exercising during pregnancy, but that has kind of taken a back seat to taking care of a toddler and surviving the horrendous Arizona heat this time around.

On the PKU front, I have continued to send in my finger poke blood about every week and am in touch with my dietician. My levels tend to get a little low with this baby sucking all my protein, so I now eat gluten-free pasta instead of low-protein. Also, some of my OTHER essential amino acids have gotten low this time around. That was a new one for me! So I have added cow’s milk to my formula and will get my amino acids checked again tomorrow at a lab.

Other than that I am excited to meet our baby girl. It will certainly be a challenge – loosing sleep, nursing again, adjusting to having two, helping my toddler adjust. But it is SUCH a privilege to be a mother. I am just so grateful God gives us this opportunity. These little ones are just so precious and it is amazing to watch them grow and realize that your nurturing makes all the difference.

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My bright little girl just turned 2!!!

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Our little family <3

And I am thankful to be healthy and to have such “easy” pregnancies. And despite the challenges of motherhood, I know with God’s help, I can do this!

August, come quick!

May 18, 2015

Explaining the PKU Diet

Growing up following the PKU diet, you get a lot of questions. You drink a special formula, say ‘no’ to many foods, and often eat different food – and people notice.

me chillin with my formula

Me and my formula

It can be hard to know how to explain PKU, because it is so rare and it’s unlike any food issue most people have ever heard of. After doing this for over 20 years, here are some thoughts I have. Hope they can help!

Note to parents: I believe it is very important to give your child many chances to explain PKU and their special diet themselves, starting at a young age. It may be easier for you to step in and do it for them, but this deprives them of a valuable opportunity to gain confidence and develop ownership over their diet. That independence will help them to be more consistent with managing the diet on their own, which is what you want!

A good rule of thumb is to keep it short. Then if they want to know more, expound.

You could start with, “I have a rare genetic disorder called PKU and I can’t metabolize protein, so I have to eat a really low-protein diet.”

Sometimes that is enough. Often though, people want to know more about what foods you can and can’t eat, what happens if you eat too much, and how you survive without eating protein.

This is where you might have explain that it’s actually just one amino acid in protein (but it’s in pretty much all food protein) that you can’t process. If you were to eat normal amounts of protein, this amino acid (Phenylalanine) would build up in your blood and cause brain damage. Here is a graphic I made to explain that concept:

Click to englarge and view in orginal post

Click to enlarge and view in original post

This leads in to answering questions about the formula. Many people know enough about nutrition to know that protein is essential to staying alive, and they wonder how you survive with so little protein.

You can tell them, “I drink a special formula every day that has all the amino acids, except Phenylalanine, plus other vitamins and minerals I need.”

For the most part I think your answer will just totally depend on the person asking and their interest level and background.

Other than that, be confident and enjoy being interesting! :-)

How do you explain PKU?

April 28, 2015

Interview with Alissa Doerner: A Classic PKU Story

Alissa is a special education teacher, a 5k runner, and a world traveler. She also has classic PKU. Here is her story.

Alissa on her recent trip to London, England

Alissa on her recent trip to London, England

What was it like growing up with Classic PKU?

Growing up with Classic PKU was just like anyone else growing up, I just ate differently. Classic PKU, my special diet, my formula, and all that came with having PKU was all I knew, so I just accepted it. From a young age, I knew and felt that I was different and needed different things than most. I was always on diet, but drinking formula was not my favorite thing to do as it wasn’t as tasty when I was very young. I knew it was what I needed to grow and to feel good so I stayed on diet and drank my formula every day. I stayed healthy and still am. PKU was and still is just a part of me.

What was your Phe tolerance as a child? What is it now that you are on kuvan?

My phe tolerance as a child was pretty low. I ate low protein food products and was limited in my daily protein intake. My formula was always my priority to get enough protein and vitamins. After finding out I was a responder to Kuvan, my phe tolerance has gone up. It is so nice to be able to have a little more freedom with my diet. There are some days when I’m hungrier and it’s nice to know that I’m able to eat some more. Whether it be having more potatoes, a piece of chocolate, or more dark green veggies, it’s been great to have more flexibility. My levels have been primarily in the 2-4 range since taking Kuvan.

What were/are some of your favorite foods to eat?

Artichokes, shitake mushrooms, and Brussel sprouts are my favorite vegetables. I could eat avocado, veggie sushi, veggie Pad Thai, low protein gnocchi, French fries or potatoes (regular and sweet) any day. I love just about any fruit especially strawberries, watermelon, pineapple, and papaya. I love low protein crepes, bread, cookies, pasta, bagels, and pretzels. There are so many more products for us nowadays, so I’ve definitely been taking advantage of that trying new things and ordering them and cooking and baking with them regularly.

Did you ever struggle to follow your diet?

When I was younger I went through phases where it was harder to accept and sometimes discouraged by the many things I couldn’t eat. It was hard to fully comprehend the effects of my diet when I was really young. I had times where I would eat half a bagel or a slice of cake, but found out that higher protein things weren’t really worth the phe when there were alternatives. My parents were always the best chefs and my heroes.

What was hard about dealing with PKU?

Going out to eat and going to parties growing up was sometimes difficult. My parents always made sure there were options for me or I would bring something I can eat. I didn’t want the attention when I was younger though. I would always bring my own lunch to school. I always drank my formula at home or at school. I wish I had brought it to lunch. I drink my formula every day at work now and love it. Back when I was younger, I thought it smelt funny and did not want to be seen with it.

What helped you stick to your diet?

My family was always there to support me and always made sure there were food options for me at home and when going out to eat. They like to eat a lot of vegetables so at dinner there were always low protein things we all ate and then something that was special for me. Growing up, I liked having my special food that was just for me. I knew that it was good for me and I like to feel good and be healthy and that was usually enough to make me try my hardest every day. Knowing the alternative of not treating PKU and how much harder things could have been if I were born before treatment options always inspired me to try my best. I’ve been given the best treatment and the opportunity and power to do my best and I never want to take that for granted. I am very thankful and feel blessed for all the things that I have and the things I can do.

What role did your family play in your PKU?

My family played the most important role in the outcome of PKU on my life. Their hard work and effort from the day I was diagnoses with PKU paid off as I turned out to be just fine. I don’t know what I would have done without them. I’m very thankful to have parents that care so much and did everything they could to provide me with the best. My family always was there for me in every way growing up with PKU. They are still always there for me. While growing up they cooked, ordered my formula and low protein food, dealt with insurance issues, took me to every clinic appointment, helped me with blood tests, and advocated for me and my diet in every way that they could as parents. They’re the best low protein chefs I know. I never felt left out at any meal at home. They constantly looked for creative and new recipes and things for me to try. They are my number one supporters and fans of me and my successes.

What did you like to do growing up? How did that work with your PKU?

I tried a lot of sports and activities during my school years, PKU never stopped me from trying things. I played soccer, did swim team, gymnastics, rowed crew, did dance, girl scouts, and took art classes. Art has always been my favorite outlet especially painting and taking pictures. With playing sports, I always made sure to drink my formula and get good sleep on my more active days. I’ve always been active at school and outside of school. Now I like to do workout classes and do 5k races once in a while. My next 5k is the MAPKUF Inc. 5k for PKU in Maryland in May. I am very excited to run with my family and friends and to meet other PKUers and their families.

What do you do when you go out to restaurants or eat with friends or in groups?

I always try to plan ahead. Looking at menus ahead of time to see the options helps. Many restaurants are great at accommodating, but you have to speak up. Leaving nuts and cheese off, replacing meat with veggie options, putting salad dressing on the side, there are many ways to cut the phe when eating out. Ordering sides of veggies, a side salad, or a side of fries has always been my fallback and I usually prefer them.

Sometimes before going out, if I know there might not be as many options, I will eat a little something before. I carry my formula everywhere I go and even keep some in my car just in case.

You are currently on Kuvan, how did you come to the decision to try it?

After going to the NPKUA 2014 conference in Salt Lake City, Utah last summer I had the opportunity to network with other PKUers that had tried Kuvan. I heard many positive experiences and more of the research of it while at the conference. I felt that it was a good point in my life to give it a try so I began my trial. What an exciting, life changing experience it was to find out that I was a responder.

Has Kuvan changed your diet? If so, how?

It has changed my life in allowing me to become more flexible with my protein intake. I’m still in the process of finding out its effects and more of what my phe and protein tolerance actually is. It’s been an adjustment, sometimes it even feels odd knowing I can eat some more, but overall it’s been a great one.

What doing in your life currently?

I’m an elementary special education teacher. I’m finishing my second year of teaching soon. I really enjoy teaching my students and helping others. I find my work always interesting, challenging, and rewarding. I’m very happy with my school and career paths.
What are some of your greatest accomplishments?

Graduating with my Bachelor’s degree in Psychology, Cum Laude and my Master’s degree in Special Education, Summa Cum Laude and becoming a special education teacher have been my greatest accomplishments so far.
You just returned from a trip to England. How was it? How do you navigate your diet while traveling?

It was an amazing trip! There’s so much history, neat culture, museums, good shopping and good food in London. I went to Stonehenge and Bath as well, beautiful places. I definitely recommend seeing those sights if you get the chance. While traveling, I always make sure to have a few BetterMilk formula packets in my purse and carry my Kuvan and doctor notes. I also make sure I have a low protein snack or two, just in case I get hungry and am worried about food options. What’s great about formula is that it is very filling and gives you energy. I recommend having it with breakfast at hotels so you can get ice. It’s a great feeling to start the day with cold BetterMilk, but having it on the go works well too. I like to mix it in plastic water bottles to drink on the go and then I don’t have to carry bottle mixers. I was able to find a low protein option in every restaurant I went to. English chips and salads were my favorites.

What would you say to other children, teens or adults living with PKU?

Remember you have formula and food options! Stay on diet and never stop trying. Don’t be afraid to try another low protein food, recipe, or formula. Keep asking questions. PKU is just a part of who you are. It’s up to you how you choose to see it. There are many more options for us nowadays. Reach out to others with PKU, stay in contact with your dietician and doctor. There may be some harder days, but you’ll learn, give it your best shot, and become stronger and smarter. Be proud of your efforts and what you’ve accomplished. Be your own PKU rock star.

What would you say to new parents of a baby diagnosed with PKU?

You will be great parents and your baby will be just fine with your love and support. Formula, diet, and support will be what your baby needs. Reach out to other PKUers, PKU parents, dieticians, and doctors for ideas and support. Whether it be through your clinic, Facebook, email, etc., reaching out to others can give a great sense of connection. You are not alone. There are so many options with low protein food, formula, and treatments like Kuvan nowadays and there will only be more and better quality ones over time.

Anything else you would like to add?

Be an advocate for yourself and PKU. Never stop learning and trying new things (in life and PKU related). Diet for life is key! Make choices that make you happy and healthy.

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March 19, 2015

Stuffed Peppers again

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I thought I’d try making these again. I used zucchini this time. Also, I asked on facebook what people like to put in their stuffed peppers, and it occurred to me that the sauce is maybe what makes the difference. I decided to try an Old El Paso sauce. I chose Roasted Tomato and really like the flavor. The only thing was it was spread pretty thin between all the rice and my husband’s beef. So next time I’ll use two sauce packets, and that way it will be more flavorful and moist.

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This recipe is for two people. For my husband I used beef and I also mixed some brown rice in with it. He got the zucchini and corn in his as well.

Recipe

6 Bell Peppers (I like yellow and orange)

1 ½ cups white rice or low-protein rice, cooked

2 zucchini, diced

2/3 cup frozen corn

1 package of Old El Paso roasted tomato sauce

1 T vegetable oil

For the protein version

1 lb ground beef, browned

½ cup grated Monterey Jack cheese

Cook the rice and brown the beef. Preheat the oven to 375. Cut up the zuchinni, add to the rice. Add corn, oil and stir in the sauce. Grease a pan big enough for 12 pepper halves. Wash peppers and cut through the top to the bottom, so they lie down on their sides. Fill peppers with rice mixture and place on greased pan. (this is where I would add more sauce on top). Cook in the oven for 30 minutes. Sprinkle cheese onto protein versions.

The process

I honestly don’t know how to dice zucchini…so this is what I did. Halved it, sliced the halves, then cut them into smaller pieces.

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Here is all of them before I put the cheese on my husband’s

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January 14, 2015

“Ziti” Bake

Hi everyone! It’s been a while. I guess I got pretty busy with the holidays and traveling.

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Low-protein “ziti” bake (I didn’t have ziti)

This meal was actually inspired by a comment on my page about making ziti bake for protein-eating family with a low-protein version on the side. Sounded good!

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Protein “ziti” bake (using shells)

The protein version I made was inspired by this recipe: Taste of Home Easy Ziti Bake, except I did shells instead of ziti and ground turkey instead of beef. Oh and I just realized I completely forgot to use eggs. Oh well. My husband and daughter liked it.

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Dinner! Nothing better than eating together.

My version went as follows and tasted really good! Nothing like warm, soft pasta in a yummy sauce.

You will need an 8 x 8 inch baking dish. The recipe says to layer the meat sauce and pasta/cheese mixture alternately, but I couldn’t figure out how to do that with the zucchini and I was in a hurry, so I just mixed it all together.

Ingredients:

  • About 6 oz of low-protein pasta of your choice (I used fusili)
  • 1 Tb olive oil
  • 1 zucchini squash
  • Garlic salt
  • Spaghetti sauce of your choice
  • 2 Tb Alfredo sause

Recipe:

Preheat the oven to 350 degrees F. Cook pasta to al dente. Fry zucchini in olive oil until they are somewhat soft, and salt with garlic salt. Drain pasta, add zucchini and a generous amount of red sauce plus about 2 Tb of alfredo sauce (there isn’t much protein in that amount). Pour into baking dish. Top with a bit more red sauce. Cook in the oven for 10 to 15 minutes.

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Viola!

December 5, 2014

Link to Interview with Recombine

I was interviewed recently about life with PKU for this genetic testing website. They published it for National PKU Awareness day.

Me You and PKU – Recombine

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November 4, 2014

BBQ Pulled Jackfruit!

I have been excited to post about this dish ever since I learned about it from Chef Andy at my recent PKU Event. This recipe is so simple, and so delicious!

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Have you ever even heard of Jack Fruit? I hadn’t. But it turns out it is the perfect substitute for pulled pork. It’s appearance and texture when shredded make you feel like you’re biting into a warm satisfying BBQ sandwich.

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Can you believe that is fruit?

Look for canned Jack fruit in your local Asian Market, or possibly a health food market. My local Sprouts did not carry it, but an Asian Market down the freeway did.

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It is important to buy the Jack fruit that is in just water, and NOT sweetened. 

1 can of this makes about 2 sandwiches. You boil the jack fruit and let is simmer for an hour. Make sure to keep adding water though. The second time I made this I forgot and ended up with charbroiled jack fruit because all the water evaporated.

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Chef Andy’s recipe included a homemade BBQ sauce, but I am all about convenience, and BBQ sauce is actually pretty low in Phe (8 mg/ Tablespoon). Also, I thought it tasted really good on toasted bread with mayonnaise spread on the inside of each slice.

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Ingredients

1 can jack fruit in water

Up to 1 bottle of your favorite BBQ sauce

2 slices of low-protein bread or buns (or whatever bread you can tolerate)

Mayonnaise

Recipe

Empty can of jackfruit with water into a sauce pan. Make sure fruit is covered in water (add water if needed). Bring to a boil. Let simmer for 1 hour, until fork tender, adding water as needed.

Drain water. Pour fruit into a mixing bowl. Pour 3/4 cup BBQ (or to taste). Stir well, breaking up chunks of jack fruit.

Toast bread or warm rolls. Spread with mayonaise. Spread BBQ jack fruit onto bread and enjoy!

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