CanPKU Newsletter

For those of you who don’t know me, my name Is Amanda Cosburn. I am 32 years old and I am a board member of CanPKU. I volunteer as a advocate for Adults living with PKU and I am a MPKU mentor. I have also been writing my personal PKU Blog for the past 6 years. ( www.pkustrong.ca)

I am originally from Victoria BC Canada; but moved to Kamloops BC Canada 6 year ago. I have classical PKU. I live with my common law spouse of 13 years and our beautiful healthy happy 2-year-old Madelyn who does not have PKU.

I met Cole in 2005, When I was 18 years old. We started dating shortly after my 19^th birthday that year.  and he is the love of my life. My best friend and my partner. At first, I hid my PKU from him and tried to eat normal foods. I had been struggling so much with my pku as a teenager. I was very unhealthy and pretty much a mess.  I wasn’t really “off diet” But I cheated and lied about it. I through out my formula and didn’t follow my diet.

I had been admitted to BC Children’s hospital 2 times for my extremely high and pro longed exposure to the high phe levels in my blood.  when I was 13 and 16-year-old. I spent 6 weeks the first time and 2 weeks the second time. I had to be withdrawn from high levels. My highest level that I can remember was 28 mg/dl. I suffered a lot from side effects and my health was extremely affected.  I struggled with self image and confidence and was battling anorexia.

Meeting Cole changed my life. He was everything I ever could have wished for. I swear he was heaven sent. I always say I never know what I did to deserve him. I think my grandma in heaven hand picked him just for me.

Once I opened up to Cole about my PKU he jumped right in. He taught himself everything including how to count PHE. He went to all my appointments, he bought me my low protein foods and he taught himself how to cook for me as well as taught me to try new things and expand my horizons by providing new possibilities. Cole introduced me to new foods and taught me how to cook and bake.  Cole inspired me to be better, to get better, to try harder. My life changed for the better.

I finally started working on my health and pushed myself to get better. I tried new foods and together we discovered new recipes. Cole told everyone in his family about PKU and how important it was for me to eat differently and why. His family has been supportive since day 1 and welcomed me with open arms. His mom is always thinking of me whenever we come for family meals and holidays. She always makes sure there are options for me and I never feel left out. She is always looking for new recipes and things for me to try to.  I cannot tell you how appreciative I am.

I went being from sickly and on 19 pills a day to manage my high-level symptoms and consequenceal ailments to being healthy and active. I was happy. I had goals and dreams and a future suddenly before me. I had ambition and motivation.  I brought my levels down in that first year together from 25 mg /dl to 1 mg/dl

Over the past 13 years I have had many ups and downs. I have been very successful on my diet and I have failed.  There have been times where Cole would come home from work and I would have a break down. Crying on the floor completely overwhelmed and so far off track that I could not pick myself back up or find my way out of the darkness.  I can remember  Cole  sitting down  with me on the ground of our first apartment and he held  me.  We would talk about how to make a plan to get through this  and what our next steps would be and where we would go from here.  He would remind me how important I was and my health.

This was all so new to me. You see I met Cole, just before graduating high school while still living at home. My home life was rocky to say the least. We never had family meals anymore and much of the time when I did eat, I cooked for myself and ate my food alone in my room.

So, when Cole and I moved in together, I had to learn to cook for others and not just me. I only really knew how to cook rice.  Cole helped me and showed me what to do and how to cook with spices and sauces.  Though to this day I do tend to over cook his meat as I am always worried about giving him food posing. I will admit, I have given him that a few times over the years. I blame the chicken.

I find cooking challenging because I can’t taste the food. After growing up knowing how costly foods are and really careful never to waste, I always worry about the taste. I worry if I ruin it.  I do mostly all the cooking in our home and always have dinner ready and waiting for when Cole gets home. I know he appreciates it but its hard to not know what it tastes like and if he will enjoy it. Luckily Cole will eat almost anything, and if he doesn’t like, he is honest, so I can learn. He will give me tips on what to do differently.

Since Cole and I have been together for my entire adult life, we have shared many experiences and made some wonderful memories. There has been a lot of firsts. My first trip past Vancouver, my first over night trip, my first real vacation, my first-time camping, my first trip out of province, going to college, working as a nurse, my first car, learning to drive, moving from my home town, dealing with anxiety and depression.  A couple of car accidents and severe injuries between us.  He has taught me sports and activities, we go out to dinner, to parties, to potlucks, we go on dates, we travel Through it all we have grown together and learnt together. I have learnt how to manage my diet away from home. What to take with me when I go out, what to pack when we travel, how to eat out, what to take camping, how to cook over a camp fire or on a propane stove. What restaurants I can eat at, who is accommodating and who is not.  Because of Cole, I have not had to navigate these things alone and we have done it together.  We learned together. It made us grow together and closer. We have grown up together.  We have changed from a young couple to a mature couple to a family.

We have had our share of house parties, potlucks, game nights. We love to entertain and host dinners for our closet friends. I have cooked a few turkey’s and ham dinners for my friends. I am actually pretty good at cooking a turkey. Who knew? I love to go all out when we have other couples together. I throw Halloween and Christmas parties. If it wasn’t for cole or his family I would not know how to cook , or have the motivation to learn and try.

We have had 14 Christmases, thanksgivings, and other major holidays that revolve around food together. Christmas use to be split between our families until we moved to Kamloops now, we spend every Christmas with his family.

I usually have a big dinner for our closet’s friends a week before Christmas as a thank you for the years and to spend time together in place of presents. I either make a turkey dinner or ham dinner and I make sure to have a lot of different options. On Christmas eve we have alternated between his brothers house and our house. My sister in law and I taking turn making Christmas eve dinner.

Christmas morning, we stay at home and I make a pancake breakfast with bacon, Sausages, eggs or hashbrowns. Then we drive out to Clinton or Horse lake to spend time with Coles family.

No matter who is hosting, there is always a lot for me to eat.

Salad, Pickled beats, cranberries, cooked carrots, brussels sprouts, mashed potatoes, home made apple sauce and I usually sneak a small piece of pie for a special occasion. I love apple pie. Specially Granny Sharon’s home-made apple pie!

I love Christmas with his family. It is nothing like mine. His whole family gets together. Aunts, uncles, cousins, grandparents. Everyone. We all pitch in and help.  We enjoy food together, socialize, share, catch up, I never feel left our or different. I feel included and special. I feel loved. It is in every way a true Christmas celebration.

I love our presents from his mom to. Every year his mom and dad plants this huge garden. Sometimes we can help plant it, other years we can help tend to it or weed, and we are always happy to raid it every summer! Coles mom; Tracy grows everything you can think of organically. Her garden is at least a couple acers big.  Every summer when we go to visit, we come back with coolers full of fresh and amazing veggies straight out of the garden. When we come over to visit, we get to held dig up fresh veggies and potatoes for dinner. We pick our salad right out of the garden. There is just something about the dirt she grows in. I have never had a better salad. Tracy’s garden is at least a couple acers.

So year-round she has organic goodies either canned or preserved. Tracy has taught me how to can foods, make jam, preserve beats, blanch and preserve corn, peas, beans, and other vegetables.

So, at Christmas Cole and now our daughter Madelyn gets “half a pig” fed and raised organically on their property.  It is butchard and made into bacon, sausages, pork chops, ham, and whatever else.

Then I get a gift basket with home made spaghetti sauce, squashes, a large bag of home-grown potatoes, canned applesauce, salsa, jams and more. Even shortbread cookies and lower protein goodies specially made so I can enjoy them to. It really is the most special gift, so thoughtful and appreciated. I look forward to it every year.

With holidays and parties or celebrations, sometimes drinks may be involved. I am not big into alcohol, but Coles grandpa makes a lovely hot spices rum that he modifies so I can enjoy it to. I stay away from beer as its high in phe and I am allergic to wine like my mother. I usually only have a drink or 2 At Christmas and in the summer for special occasions. My summer drink is rum and orange juice or pineapple juice. I also love a good peach belini, daiquiri, margarita.

For so long now, I have not felt left out of experiences of different because of food. I don’t feel like I am missing out anymore. I don’t let it hold me back. I am not anxious about social gatherings. So much social activity revolves around food, but it doesn’t bother me. If anything, I feel empowered. If anyone notices my diet differences, I now view it as an opportunity to educate and spread awareness. I no longer hide or shy away.  Cole and his family gave me that.

Together Cole and I have supported each other through job losses, career changes, personal highs and lows, challenges and successes. We have carried each other and supported each other. I remember one time in 2008 after I had my knee surgery, I could not walk or cook or do anything. I was laid up on the couch for weeks as I ended up getting an infection. Cole had made sure we had done a big food order and he cooked all my meals and carried them to the couch for me. He learnt how to cook the pastas and the cambrooke foods perogies. He even kept track of the phe himself! He can do the math in his head!!  Like I said I am truly blessed to share my life with him.

In 2007 Cole and I were invited to a class about Maternal PKU at my clinic. Where I met and made a life long friend in a PKU mom who had a baby!

She actually did it. She had a happy healthy son.  Up until that point I didn’t think it was possible.   I had secretly hoped and wished for so long. I have always wanted to be mother. From that point on I knew one day my dream would come true. There was no going back for me. One day it would happen. I have ached and longed since that moment. I have never wanted anything so badly as I wanted to be a mother. With every part of my being.

We put it off though for years. Life got in the way, my struggles with compliance and my constant merry go round of up and down levels made it seem like it was never going to happen for us. I had almost given up hope.  That feeling pushed me to fight for PKU awareness, for access to treatments. It motivated me to use my voice, to stand up as an advocate and join the fight with CanPKU to get low protein food coverage. I even met personally with the previous BC health minister Terry Lake personally and told him about my dream and my plight. What my obstacles where and what I need to achieve my deepest dream.  Thankfully our voices where heard, Our hard work paid off. We won food coverage for all PKU patients in BC in 2014. Terry Lake personally called me at home to tell me before the announcement.  I remember he said to me, the next time I hear from you I hope its because you are pregnant.

In June of 2015 I got pregnant. Terry was one of my first calls once it was safe to start telling people.

Being pregnant was the most amazing experience in the whole world. It was both the hardest thing I ever did and the most rewarding and miraculous.  Creating life, growing life, life its self, and the whole birth experience is amazing.  My daughter is the answer to all my wishes and all my prayers. She has brought so much joy and happiness to our life. She has fulfilled us in ways I never thought where lacking. I seriously never knew my heart could love like this. It is really amazing. I feel so full I could bust over.

I worked tirelessly and the hardest I had ever worked in my life to ensure her health. To give her the best start in life.  Cole supported me every step of the way.  I will never forget watching him hold his baby daughter for the first time ever.

I had remarkable levels my whole pregnancy. Well once I found out I was pregnant anyways. My tolerance went from 200 mg phe to 2000 mg phe! over 40 grams of protein.

After giving birth, it was so rough trying to adjust back to such a restrictive diet. I finally get the appeal of things like Kuvan and peg-pal.

I will admit it has not been easy and in the 2.5 years since my daughter has been born, I have struggled with managing my diet, cooking for our family and changing my career from being nurse to a stay at home mom, to opening my own licensed family daycare in our home.

When Madelyn was 3 weeks old, she was diagnosed with a cow’s milk protein allergy and she needed to have a special formula. So, when she started eating solids, I was cooking for 3 different diets.  Madelyns nutrition was so important to me, I did not know much about the needs of babies and infants.

I did a lot of research into what her requirements where and the best way to ensure she was meeting them, so she could continue to develop and grow.  I bought a lot of books, joined a lot of food groups on Facebook, researched recipes online. Talked to medical professionals and even drew on my own dieticians’ knowledge as well as other mothers around me.

With all my experiences in diet and restriction, allergies, and nutrition I can fully appreciate how important nutrition is and how powerful it can be to fuel the body and treat anything unexpected. Food really is the best medicine for the body.

For the first 3 weeks after Madelyn turned 6 months old, I pureed everything and made all her meals from scratch. I portioned them out and froze them in our freezer.  We even all have our own freezers, pantries and cupboards.

I made her muffins, oatmeal bars, snacks and more all from scratch. And with out dairy.

Then I learnt about baby lead weaning and our lives changed again. We switched over fully to baby lead weaning before she was 7 months old.  We supplemented dairy and milk with almond milk. She had dayia cheese, like me.   I found her coconut yogurt and other alternatives. I tried my best to make her meals nutritious, taste good and be appealing. I did not want her to feel different like I had. I made her meals as close to ours as possible and we always eat meals together.

The benefits of baby lead weaning seemed so obvious to me and would prevent some of the problems I had growing up like being a very picky eater!

Madelyn out grew her cow’s milk protein allergy just before she turned 2. She does also have eczema that seems to be brought on by a food allergy; we are just not sure what. She also has child hood viral induced asthma. Both are very common with children who have or have had a cow’s milk protein allergy. Now that she has outgrown her cows milk allergy she can and will eat just about anything. She specially loves to eat meat.  She eats peanut butter and jam sandwiches almost every day. She loves pasta, chicken, pork, yogurt, cheese and rice. She loves soy sauce. She will put it on everything if you let her. She could live off fruit if we let her too. There is not a fruit she does not love. I think she eats a banana every single day. She has been known to climb the cupboards and help her self.  I have even caught her sneaking into the fridge and helping herself to some yogurt or whatever she can reach.

Life has been so busy with a toddler, a home and family, taking courses and getting my daycare providers license. Starting my own business and running and managing a daycare. I have 6 kids registered in my daycare not including Madelyn.  I am open 730 to 5 pm. I provide snacks and parents provide lunch. We eat lunch together every day.  Sometimes when I am cooking meal, prepping activities, planning snacks, field trips, arts and crafts and tweaking our daily schedule it has become very easy to let my own diet slide.

I will admit I fell quite a way off track this past summer. I eat way too much minute rice as its so easy to make and so quick and easy. After my daycare kids leave at 5 pm , I throw some meat into the electric pressure cooker, steam up some veggies and throw on the rice cooker while I clean up and tidy the daycare, our home , spend time with Madelyn or just sit down for a few minutes for myself .

The last thing I want to do is log on to how much phe, track my intake and plan a meal by crunching numbers. I don’t have time on the weekends to meal prep, bake or cook because weekends are time for errands, groceries, and family time. Or just time to rest.  Since I haven’t had time to do any baking or meal plans when it comes time to make food, I just make something up quick and easy, add meat to it for Cole and Madelyn and be done.  I do of course still drink all my formula. I love my formula actually.

I eat breakfast with Madelyn every morning, she usually has peanut butter and toast with fruit. I usually have something low protein. We both have our milk. Lunch we eat with our daycare kids, and I prep out the snacks for the day.  Usually they have fruit, yogurt, cheese, and water . Lunch is either pasta, chicken nuggets, veggie sticks, or sandwiches, quesadillas etc.  I try to match them as best we can. Snack I have an apple and a formula. Dinner is the hard part. I am so hungry and tired by the time dinner comes around. It usually ends up being minute rice with veggies, mashed potatoes and veggies, or a low protein pasta salad. If I make it a pasta night, I am making 3 different dinners. Low protein for me, regular for Madelyn and no carbs for Cole so he ends up with a salad and meet. He has stopped eating carbs, sugars and has been doing intermittent fasting. If he does have pasta, I must make sure its whole wheat and I don’t have sugary sauces.  On the weekends Madelyn and I have a small breakfast then we do a big brunch at noon when Cole takes his first meal. Usually I have 2 frying pans on the stove. I make them a fully loaded hash, with bacon or sausages, hashbrowns, eggs and cheese all together. Then I have mine and I make similar with regular hashbrowns, onions, mushrooms, peppers, spinach, spices, low protein earth islands cheese, no eggs and some avocado.  I love carbs and starchy foods. They fill me up. I do not eat enough fruit or vegetables. So, this past couple week I have been doing a lot of research online and on facebook about plant-based eating and how to manage it with PKU. So basically, not adding tofu or nuts and grains.  I have been experimenting with new recipes once a week on the weekend and how to make it work for all 3 of us with mild alterations and substitutions so I can come back to it and make it again quickly during the week.  I really need to increase my activity and better my diet buy introducing some variety and cutting out such highly processed foods. I am very reliant on low protein medical foods. I need to focus more on the fruit and vegetables side of PKU diet.  Because I eat mostly low protein foods, I have gained a lot of weight so im trying to find a balance between my eating and my activity to help loose my extra weight. My goal is 50 lbs. I have found a lot of great support online in the PKU Facebook community and I feel blessed that we have access to so much more information and support now then when I was growing up.

I must send a shout out to my PKU team, my community, my mommy village, my friends and my family. For with out them I would not be who I am today. With out their constant support I am not sure what would have happened to be during my dark times.  I have truly wonderful and supportive Dieticians at Vancouver general hospital.  Who time and time again have gone above and beyond for me. Who have listened to me and all my crazy ideas and guided me through my ups and downs.  With all the love and support around me, I never feel alone anymore. I am not that scared messed up 13-year-old with no friends and hounded by relentless bullying, teasing and drama. I have over come everything ever put in my path and faced challenges head on because I know, I am not standing alone. I am not fighting alone. In some ways, I am lucky to have PKU because it has brought me some amazing friends. I have this amazing network and am apart of a community. I am apart of a team. I get to volunteer and work with some impressive people. I have formed many new relationships with media, MLAs, government officials. I have developed skills, social skills, team building skills, speaking skills, writing skills, and learned valuable lessons I might not have learned if this was not my world.  My Experiences have helped shape the person I have grown up to be. Even in my struggles I found strength. I have achieved some of my dreams and met my goals. If I could teach anyone who lives with PKU in their life, one thing, I would teach them, “PKU is not who you are, it is apart of you.  Don’t ever let it hold you back. Accept and embrace it, it can be a very positive experience. “