Sunday, January 12, 2014

Maternal PKU: Weeks 1-8

This is part of a series of posts related to Maternal PKU. These will be post-dated since pregnancy made me a bit behind on my blogging. I am not a medical expert and this is my experience only. Pre-pregnancy I was already on Kuvan for about five years with a tolerance of 30 grams protein/day. (Pre-Kuvan my tolerance was about 500 mg phe/day or 10grams of protein)


~Positive Test!~
The entire time my husband and I were trying to get pregnant, we sent in blood levels every other week. Then one Saturday in early December, we saw a positive test. We were officially having a baby! After the joy and excitement, I started to freak out a little. Thanksgiving was only a week earlier and I was fairly certain I had done some "cheating". We took a level the day after we found out I was pregnant, and it was 2.5 mg/dl. I was safe (granted, I didn't know that until almost two weeks later because the results took forever to get back!).

First thing Monday morning, I e-mailed my geneticist and called my OBGYN.

The geneticist was apparently out of the country when I tried to contact her, so it was over a week before I heard back. As soon as I did, she scheduled an appointment with me the next day (at about week 5). At the appointment, we went over my levels, she requested weekly levels instead of very other week, she ordered another Amino Acid panel, and we discussed having follow up appointments every other month. We also discuss morning sickness and the important of keeping my formula down. At this point, I had no issues yet, but she suggested we discuss it with the OBGYN and make him aware.

We had already told my OBGYN about PKU and he had basic information about Maternal PKU. We scheduled an appointment with the OBGYN at what would be 6 weeks. For the most part, it was just a typical appointment anyone pregnant would have. We were already able to hear our babies heartbeat!
He went ahead and prescribed Ondansetron (Zofran) just in case I needed it for morning sickness later on. The only  other PKU-related issue was discussing and confirming that the OBGYN and the geneticist were communicating with each other.

~Morning Sickness~
A week later the Zofran became an essential part of life. Morning sickness is a deceitful name. I was sick all day long. I started taking Zofran and the second it wore off, I would feel sick again.

In hindsight, I learned a few things. First, the prenatal vitamins I was on made me sick. I switched brands a few months later and felt better. Than I switched back to the past vitamin and was sick immediately. I guess I had never noticed before how often I would get sick within about 30 minutes of taking them. It may not be a bad idea to try different brands if you are having problems.
The second thing is that formula almost always made me feel sick and the Kuvan did as well. This made it very difficult to keep food down. I learned to time the formulas well- to be sure to take my formula at least an hour after taking the medicine or an hour before it wore off, or else the formula would be lost! (This continued from Week 7 until Week 19). and I learned to avoid certain foods (tomato sauce on anything for example), and managed to keep formula and food down most of the time even if I still felt ill. It was a long journey!

Levels (mg/dl)
Week 2- 2.1
Week 4- 2.5 (Positive Test)
Week 5- 4.1
Week 6- 7.7 (no idea what happened there?)
Week 7- 5.1 (morning sickness started)
Week 8 - 4.6




Saturday, November 02, 2013

Maternal PKU: Pre-Pregnancy & Kuvan

This is the first in a series of posts related to Maternal PKU. These will be post-dated since pregnancy made me a bit behind on my blogging. I am not a medical expert and this is my experience only. Pre-pregnancy I was already on Kuvan for about five years with a tolerance of 30 grams protein/day. (Pre-Kuvan my tolerance was about 500 mg phe/day or 10grams of protein)

~Pre-Pregnancy~
If your reading this, you may already know that one of the most important things for any PKUer before getting pregnant is to have levels under control. We knew we wanted to start trying to have children sometime around August (2013), so we talked to my geneticist and dietitian months before that. On Kuvan my levels were under control for the most part, but they ranged from about 3-8mg/dl (a little to high for pregnancy).

My geneticist wanted levels every other week before we started trying to ensure I could keep them in range. For my clinic, acceptable range was seen as 2-6mg/dl. (I have heard some clinics prefer no more than 4mg/dl). Since I was already under control with my levels, it didn't take long to ensure I didn't have levels over 6mg/dl. She also had me start taking pre-natal vitamins at this point and ran a complete amino-acid panel. She sent us with some information to give to my OBGYN and requested we fill him in on PKU so that he is ready when the time comes. When I had a couple months of good levels, we felt comfortable trying.


Kuvan or Not to Kuvan?
~Kuvan~
As far as the decision to stay on Kuvan goes, this was a difficult choice. As I mentioned above, I had already been on Kuvan for five years. Pre-Kuvan I was rarely able to keep my levels consistently low (8-14mg/dl was the normal level). After five years of not eating any low-protein foods, I could not imagine trying to go back. My husband and I met a few years into my Kuvan use, and he didn't even know what life before Kuvan was like for me. We moved to a new town once we were married, so literally no one in my everyday life knew what my "real" PKU diet would look like. I knew I would have my husband and friends' support if I wanted to try to stop taking Kuvan, but I wasn't sure if it was the best choice.

My husband and I both attended the National PKU Alliance conference in 2012 to learn as much as we could about Maternal PKU. Although there was not a lot of published information, we were able to meet with people who had successful PKU pregnancies. We were able to actually ask questions to doctors who had done Kuvan Maternal PKU studies. We were connected with the Maternal PKU Facebook page (a must for any Maternal PKU lady in my opinion). Through that, I was actually able to interact and ask questions with some of those ladies who were otherwise anonymous parts of those studies. Bottom line is we decided the risks of Kuvan were low, and the risks of no Kuvan for me personally were high.

Friday, July 19, 2013

Marsala Chicken and Mushroom Casserole

This is one of our new favorite recipes. It's simple, yet so delicious. I make one version with chicken (this recipe) and another PKU friendly "lower" protein recipe.

Enjoy!

Ingredients:

  • 2 tablespoons butter
  • 10 ounces sliced mushrooms
  • 1 1/2tablespoons flour
  • 1 cup Marsala wine or white wine
  • 1 cup heavy cream
  • 2 tablespoons chopped flat-leaf parsley
  • 1 teaspoon salt
  • 1/2 teaspoon pepper
  • 1 cup uncooked long-grain rice
  • 2 cups shredded chicken (I use shredded chicken breast)
  • 2 tablespoons grated Parmesan cheese


Directions:

1. Preheat the oven to 350 degrees.

2.  In a large skillet, melt the butter over medium-high.  Add the mushrooms and cook, stirring occasionally, until softened, about 5 minutes. Sprinkle the flour on top and stir in for 1 minute. 

3. Stir in the Marsala and cream and simmer, stirring occasionally, until slightly thickened, about 3 minutes. Stir in 2 cups water, the parsley, salt  and pepper

4. In a greased 9-inch-by-13-inch casserole pan, spread the rice in an even layer; top with the chicken. Pour the mushroom gravy on top. Cover with foil and bake until bubbly, about 35 minutes. Discard the foil, sprinkle the Parmesan on top and bake for 5 minutes more.


yum!

Marsala Mushroom Casserole

This is one of our new favorite recipes. It's simple, yet so delicious. I make a version for my husband and for my PKU self. This one is the 'lower" protein version (no chicken/no cheese). For the version with chicken, use this recipe

For my version, I actually do a 1/2 recipe and use a smaller 8 inch square pan. You can double to recipe and use a 9x13 as well. I do NOT use low-protein rice, and it is still low enough for me diet. If you would like to try it with low-pro rice, feel free. Let me know how it turns out.

Ingredients:
1 tablespoon butter
10 ounces sliced mushrooms
1 tablespoon flour
1 cup Marsala wine
1 cup heavy cream
1 tablespoons parsley
1/2 teaspoon salt
1/4 teaspoon pepper
1 cups water
1/2 cup uncooked long-grain rice (I use real rice, not low-protein)


Directions:
1. Preheat the oven to 350 degrees.

2. In a large skillet, melt the butter over medium-high heat. Add the mushrooms and cook, stirring occasionally, until softened, about 5 minutes. Sprinkle the flour on top and stir in for 1 minute.


3. Stir in the Marsala and cream and simmer, stirring occasionally, until slightly thickened, about 3 minutes. Stir in 2 cups water, the parsley, salt and pepper.

4. In a greased 8 inch casserole, spread the rice in an even layer. Pour the mushroom gravy on top. Cover with foil and bake until bubbly, about 35-45 minutes.

before baking...a lot of liquid



After photo COMING SOON...

Tuesday, June 18, 2013

White Wine Marinated Portabella Mushroom Burger

So I must confess, the mushroom burger recipe I posted a while back has had many views, but I got lazy...I made an easier one. I still really like that recipe. But let's face it...when your friends are grilling burgers, the last thing you want to bring is a messy/falling apart mushroom patty or spend a long time prepping. I gave in to the world of portabella mushroom burgers. 

I knew they were easier, but I just hadn't enjoyed the texture in the past. Every time I tried them, they were too chewy rubbery. But after a friend attempted to marinate one in some Italian dressing for me, I got an idea. (The Italian dressing marinate was great, don't get me wrong...but my idea fits my taste buds perfectly).

White Wine Marinated Portabella Mushroom Burger with (imitation) Swiss Cheese

1 portabella mushroom (try to find one the same width as the bun you will use)
1/2 cup white wine (cooking wine is fine)
1 tsp. thyme
1/2 T. butter (just enough to "grease" the pan)
Imitation Swiss Cheese Slice (I use one of the kinds you can buy at Walmart, but any cheese will work).
1 "hamburger" bun of your choice/phe allowance


PREP: Remove mushroom stem and wash mushroom well. Place mushroom in a plastic Ziploc bag with the 1/2c. of white wine and the thyme. Let sit for at least 30 minutes.

GRILLING: Bring to the grill and place on the grill just like anyone else would place their burger. I can't help with timing, because it all depends on the grill. If you are worried about the white wine dripping, you may place the mushroom on foil before placing it on the grill. I always hand it to the men in my life and let them do the grilling! Sorry, not much help there. The real point is that I can throw all the prep stuff into a bag in about 5 minutes and bring it to a friend's house. 

PAN:
1. Set burner on medium heat and melt butter.
2. Add mushroom from bag (save "juice" in the bag). Allow mushroom to cook in the butter, a few minutes each side. Flip as needed.

Mushroom with thyme, cooked and almost ready


3. When the pan starts to get dry, add the "juice" from the bag. Allow mushroom to simmer in the white wine until liquid is ALMOST gone.



4. Turn burner to low and place cheese slice on top of the mushroom. If you have a PKU-friendly non-melting cheese like I use, just leave it there until it is warm and the rest of the liquid is gone. If you are impatient, you can put the mushroom and cheese in the microwave for a few seconds.

Add cheese when only a little liquid is left

5. Place mushroom on bun and add ketchup and/or other exciting things you might want to add.

That's it. Very simple, low prep work. I still enjoy the other recipe, but this one is so easy. The white wine and mushroom and "swiss" taste is great together, and it's simple to bring over to a cook out. I would imagine non-PKU people might enjoy the flavors as well (with real cheese of course). Feel free to pass the recipe along. Enjoy.




Yum! Ignore the non-melty cheese and the bun that is too small. It tasted great.

Wednesday, March 06, 2013

Our Mushroom "Farm"

If you haven't figured out from my recipe blogs, we eat a lot of mushrooms in our household. I often use them as a low protein substitute for meat. For Christmas this year, my creative and thoughtful father bought us mushroom kits.

For the past few months, we have grown our own white button mushrooms. It was fairly easy to "assemble" (mix the dirt/spores). We water it every now and then and have fresh mushrooms every couple of days. The mushrooms were WHITE...I didn' t know they actually came in real white...but they do. They last a long time since they are much more fresh than store-bought, and they tasted great.

If you want to try this at home, I will warn you- you MUST harvest on a regular basis. We left the kit alone in our guest bedroom for a few days and had 2 lbs. of mushrooms that had grown past the appropriate harvest time. It was sad to toss them, but we still had plenty more left.

Mushrooms grow in a bag inside a box
(sorry the picture is fuzzy)

Our second kit, the portabellas, did not produce much...so far we have 3. But the first kit provided plenty of mushrooms (I can't imagine what we would have done if we had double the mushroom harvest...we already have much more than we need! )

I'm not entirely sure where my father purchased our kit, but there seem to be many available online. For those of you that like mushrooms, they taste so much better and were so easy to grow. We may have to get another kit and start growing year-round.

First harvest, very large fresh mushrooms
I'd love to figure out how to make our own "kits" (aka mix our own spores/dirt/compost) to save money...if anyone reading knows how, feel free to share. Meanwhile, we will stick to the kit!


Tuesday, February 26, 2013

Swimsuit Shopping


Today I got a catalog in the mail that actually made me want to buy a new swimsuit.
In fact, every time I get this catalog, I want a swimsuit.

After years of struggling trying to find modest swimsuits that didn't look granny-ish, I finally found the brand that works for me. As a youth worker, I need a suit (they hate when act "old" and don't actually get in the pool). And as a church youth worker, I need to make sure my top half is contained. As a 30+ woman, I need to make sure my thighs are contained. :)

 See the example of the modest shorts style in the center
 I promise I'm not being paid to "sell" you these suits, I just felt like Athleta is a secret that almost no one knows about. I need to share.

Not only do they sell modest bottoms (actual short length with a loose fit), they sell bra size tops. Plus they are all actually lined with support (they lift and and have thick lining).They also sell most tops/one pieces in tall sizes, a must have for my tankini tops. If you are one who likes a little more skin to show on your suits, they have those too. But their suits still have the supportive tops and are much better quality. I actually ended up with two tops and two bottoms of the same suit, so I can mix and match.

Now, not all suits are bra-size tops, but many are. Not all the shorts are loose...some are the tight fit style that most places sell. And a few of the prints are kind of...well...let's just say not my style. But they have some great options...just be sure to read the details if you are looking for a particular style.

I was really hesitant to order a swimsuit online, but they have free returns. After spending many hours EVERY summer trying on suits and ending up in tears and frustrated, I decided it wasn't much of a risk. I am so thankful my friend Grete shared the "insider information"with me. My swimsuit shopping has been tear-free ever since. I hope this helps some of you enjoy the same "tear-free" shopping.

P.S. They have other cute stuff, but I have no idea if it's great. Athletic wear for me is rarely needed and is usually a t-shirt and basketball shorts.

Sunday, January 20, 2013

Cambrooke's Swirl Caramel (updated)

A PKU Review

Swirl! My sampled arrived in the mail a few weeks ago. I actually tried this at the PKU conference this summer in a "secret taste test", so it wasn't new to me. But having it in the comfort of my own home was new. I was excited.

The taste test I did at the conference included 3 flavors, and none of them tasted like formula. I must admit that of the flavors, the caramel was the one I like the least. It reminded me of butterscotch pudding...not bad at all, but not a pudding flavor I ever pick. I'm excited for the chocolate flavor to come out someday soon.

Once again, Cambrooke managed to created a product that does not taste like formula. It is very rich (too rich for a morning formula for sure!). It is also messy. I made mine in my normal shaker cup with 3 oz. of water. I actually ended up stirring it after shaking because it still had some power-looking texture. I ate as much as I could scrape of the sides, but I felt like I wasted a lot of it. It stuck to the sides and was difficult to clean up. I even searched online to see how Cambrooke suggested making it, and they actually used the same exact cup I did. They just didn't zoom in on the mess made inside the cup.

I don't know that shelf life would allow this, but I would LOVE if swirl came in "snack pack" size cups premixed. I'm all about tasty formula, but as an adult with a full time job, if it's not convenient and easy to make, then it is not practical for life. I don't mind the cutesy official name "Kick'n'It Karamel", but I am very glad they didn't put that on the actual package...and I hope they don't add it. It's never fun to have people think you are snacking on/drinking/eating kiddie food.

With my second pack, I'm going to try the Swirl mixed as a "smoothie". I am sure it will taste great, and I'll update more later.

UPDATE:
I mixed the second pack with 8oz. of water and it was a nice texture. It tasted the same (good, but butterscotch-like) but was less messy since the liquid did not stick to the cup. I wouldn't mind this as a formula choice, but it is a bit rich. If they come out with the chocolate flavor, I would really like to have this as an evening "dessert" formula, since it really does taste like a sweet flavored shake/smoothie.


Looks just like pudding...yum

It stick to the side of the cup & needs to be scraped out :(