Clinics

Every time that I sign into Facebook I see parents asking which clinics in the country are the best because they are so unsatisfied with theirs, that they would be willing to move anywhere to have the opportunity to work with a better one. How sad is this? Parents are having to uproot their whole lives and the lives of their children just so that their PKUer can get decent care! I totally understand this because I am less than satisfied with Marigold's clinic, and that is one of the many reasons that we are wanting to move, but I don't have my WHOLE life set up here. Sure, my family is here, and this is where I always saw myself settling down, but moving isn't a huge deal for my husband and I. As long as he finds a job we can pretty much go anywhere as a young couple with few commitments. This is just another reason why PKU advocates need to raise awareness of the condition and the hardships that those affected by it face.

Rainy Thursday

Every week a new bill comes in. Right now, Marigold has no coverage at all medically. She should, but because of circumstances that I could not control during labor she doesn't. Marigold, my husband, and I live in Canada, just a few miles away from the U.S. When I was in labor I went to a local hospital (that doesn't deliver) and they told me that there were some complications and that I needed to get to the nearest hospital ASAP. The nearest one just happened to be in the U.S. I am not a Canadian through birth, but through my parents, which means that Marigold cannot take up citizenship from me. In order for her to become a Canadian I need to prove that I can support her financially and pay insane fees and fill out piles of paperwork. So long story short, Marigold can't get covered in Canada because she is not a permanent resident or citizen, but she can't get any coverage where she was born because she doesn't live there. Then comes another issue...  I cannot work right now because Marigold NEEDS to be breastfed. There is less phenylalanine in breast milk than in formula. Marigold has a mild case of PKU, and doesn't need any diet intervention right now as long as she has no formula. I've tried finding a job where she could come with me, or where I could pump enough for her but it just is not possible where I live. If I were to go back to work she would need to have part breast milk, part formula, and then have some PKU formula since her phenylalanine intake would be too high supplementing with regular formula. The cost of the PKU formula, and childcare for her while I would be at work would cost $100+ more than I would make working full time.

I'm just venting and hoping that you might pray that my husband will find a better job than what he has right now so that we won't have to worry about her bills and care much longer. Unfortunately we have realized that we won't be able to live here, where I grew up and where my family is for many reasons. Including our lack of confidence in Marigold's clinic, the cost of her PKU needs, uncertainty of whether she will be able to take up citizenship anytime soon, and the lack of good jobs here for college-educated people.

Please just keep us in your thoughts, and thanks for reading this and praying for us.

PKU Awareness

I had never even heard of PKU when my daughter was diagnosed. I'm pretty sure that most parents of PKUers would say the same. It's just so crazy to think that most people are uneducated on the condition, but that so many people are carriers and don't even know it. What is really crazy though is that certain states are unaware of the fact that it is healthier and beneficial to people with PKU to stay on the diet FOR LIFE! I was looking up different state policies and WAY too many states only require formula to be covered until a child turns 18, 21 or there was one that stops at 6! THAT IS INSANE! One mom that I spoke to recently told me that in her state they are not covering her babies formula "because lots of babies need a special formula..." uhhh... so not the same thing. Yes some babies might need say a soy formula or something else THAT YOU CAN GET IN A GROCERY STORE, and that DOESN'T COST $400+ A MONTH! Sorry for all the caps but come on...

So I am writing this post out of frustration and to say that it is up to all of us who have been affected by PKU in some way to bring awareness to the condition. We need to write to our governments, share our stories and educate others. May (PKU awareness month) might have come and gone, but that doesn't mean that we should stop spreading the word.

You can find a PKU awareness t-shit at the link below. If wearing a t-shirt like this just is not for you, you can....

Make you own t-shirt
Put a sticker on your car (really they do raise awareness, I used to play a car game where I would google any awareness sticker I saw on roadtrips).
Write to your state or provincial government.
Share your story with local news, or on a blog, or just on your Facebook.
Hold a fundraiser in your community for one of the many good causes in the PKU community (e-mail me if you can't think of one!)
Share this blog or other PKU blogs and website with friends.

http://teespring.com/PKUchoice#pid=162&cid=1028

Some useful resources

 

I recently stumbled across some great resources I thought I should share! So Delicious and Gerber put out some PDF files with their phe content for foods, so here they are! As far as I know these are very recent and up-to-date.





https://drive.google.com/file/d/0B0DMCKPXRpH1SDVmYzg4SHlpTkE/edit?usp=sharing

https://drive.google.com/file/d/0B0DMCKPXRpH1R0NuMWZtRDZ4Y1U/edit?usp=sharing


The link will take you to my Google Drive account. Thanks So Delicious and Gerber! You rock! I'll post any more files I stumble across. I am still hoping that Glutino will FINALLY put in the effort to create a document to help people with metabolic disorders.

Formula?

     So now that I'm not so new to the PKU world I've been researching different types of formula since my daughter will have to drink it every day for the rest of her life (hopefully at least, my goal is to teach her how important being on her diet is). What I've found is really quite discouraging! Just looking at the back of a leading PKU formula and reading the ingredients makes my head hurt. The VERY FIRST ingredient on every formula I found is Corn Syrup Solids... Uhhh.... no thanks. It is great that the formula has all the vitamins and minerals she needs for the day, but while I was pregnant I was sick everyday because my body couldn't handle all the things that were in my vitamin at once. So why would I want my daughter's body to have to work even harder just to deal with some of the crap in her formula AND all the things she really needs?

     I haven't found a solution but a few promising leads, and the main reason I'm writing this post is to ask any PKUers or PKU parents if they feel the same way, and what they do. I've found a product from PheylAde, their amino acid blends...

                                             
 A phenylalanine-free, powdered medical food for the dietary management of phenylketonuria (PKU) in toddlers, children and adults, including pregnant women and women of child-bearing age.   
      I haven't done enough research on this product to have a full opinion, but it seems like a much better option than formula to me. I'd have to make sure that MK got her vitamins from foods and supplements at different times of the day, but this seems to be better for her little kidneys when she is a toddler and she'll get all the amino acids that she won't receive on a low-protein diet.

    Anybody want to share their experiences with me or even their opinions? E-mail me at pkumomma@gmail.com please!

10 Things parents of PKUers are tired of hearing...

1) So your kid has to have a low protein diet, that just means she has to be a vegetarian, no big deal!
2) My kid is lactose intolerant so I understand!
3) That is what you get for eating unhealthily during pregnancy!
4) She'll grow out of it.
5) She'll be so healthy eating fruits and veggies all the time!
6) So does that mean she'll have to be gluten free?
7) 350mg sounds like a lot! (when referring to phe intake)
8) What is phenylalanine? What is an amino acid?
9) My baby had to have a heel prick once, it was horrible, I know what you're going through!
10) Maybe you shouldn't have anymore kids if you're going to give them PKU again.

Heard all of these at a family BBQ last week! Good grief...

How I feel about PKU two months later

      Marigold is 2 months and 2 weeks old. So about this time 2 months ago I received the news about her PKU. It's amazing how much I've learned the last two months, both about being a parent and about PKU. I've learned that it is not as scary as I thought. I've learned that she WILL have a normal life, and be able to do everything she wants, some things just may take extra effort. Most of all I learned just how much I can love someone, and that I would do anything for Marigold.

     I've talked to dozens of parents of children with PKU in the past two months, and I've spoken with a few adults with PKU. We all would surely agree that our children (or ourselves) are capable of achieving whatever they may want in life, if they follow their diet. Sure, I still get a little sad sometimes when I think of how Marigold may feel different or get teased when she is older, BUT WHO DOESN'T AS A CHILD!? I got teased for being too skinny, for having crooked teeth, for being a vegetarian, for my initials... for tons of things! Marigold is going to get teased, there is no doubt about it. I just need to do my best to make sure that whether she is teased about her PKU or when someone calls her "Goldielocks" because of her name that she does not become too insecure about it.

     I realize that I am blessed to have a beautiful, smart, healthy (YES! HEALTHY!) baby girl. Really, what if it had been CF, or a tumor, or what if she had any sort of fatal condition? That would be devastating! PKU isn't though. It makes her unique, it is what helps to make her her. Her beautiful, perfect little self.

     It took me two months to get here, but I am no longer devastated by PKU. It's just part of life now.

Sleepy time song for Marigold

Fermes les yeux
Ma petite Fleure
Je t'aime beaucoup
Please don't be blue
It's time for some sleep
My hearts yours to keep
Because I love you