Madelyn, Managing the diet

3 Different Diets + 1 Family = Learning Curve.

Posted on by Amanda Horner

Madelyn is 8 months old as of November 4th. She is doing amazing.

monthlys6

Madelyn can now walk around the table and from couch to couch while holding on.
She climbs the baby gate
chases copper and figaro.
She says mama / Dada and hi !
She is getting better at sleeping in her crib, though we still co sleep at the beginning of the night.
She is learning to wave and clap
She hums / sings to music
She likes to pull mama’s hair and jewelry.
She has 2 bottom teeth and working on another one soon.
She loves to stand
She pushes her toys around while walking.
She stands at the toy bin and pulls all the toys put then puts them back in
She pulls her self up onto everything.
She’s very busy and vocal
She is easily entertained by others and loves to watch other kids.
She has a new baby cousin. A boy! Who she will stare at and smile..
She loves to put anything Into her mouth .
She’s fast!
She celebrated her first thanksgiving and Halloween this month.


She still wears size 6 months clothing.
She got a new 3 and 1 car seat and jogging stroller this month to.
Her favorite foods are fruits and vegetables. Specially carrots and bananas. She prefers to feed herself. She tried many new foods this month like pancakes / toast / sole fish and rice.
She got her first cloth diaper.
She loves her elephant pillow and toys.
She had her hair up in a pony today for the first time.
She loves to sit and play in the bath tub every night as part of our bedtime routine.
She still loves her swing.
She does not like eggs or asparagus. She does not like her crib but it’s getting better.
She does not like the jolly jumper.
Our baby is growing and changing so much that I’m constantly astounded and trying new ways to challenge her and keep her busy while teaching her new things. Trying my best to keep up !
She weighs 14.6 lbs
I love her smiles and the way she giggles and the sounds she makes when she’s talking to you. I love the way she gives open mouth kisses and says mama and Dada.
I love our cuddles and watching her sleep or watching her play with her toys and interact in her environment . She so happy and full of smiles and giggles !
#daddysgirl #mommysworld #babygirl

At 6 months we started weaning. We started with home made purees due to her dairy allergy.  I made everything from scratch. We started with baby organic oatmeal and slowly started adding purees , introducing one new food every 3 days. but with in a couple weeks we started to introduce baby lead weaning and she took to it so quickly and it was clear she prefers to feed herself. She is such a great eater.  I was so worried about choking and feeding her this way. I did my research , I read books and talked to other moms and joined groups on fb.

now at 8 months old , she is currently sitting next to me in her high chair eating oatmeal bars that I made her the other day.

She already has such a variety of foods. She is not a picky eater at all like I was. I am always amazed buy how strong her little jaw and gums are to be able to eat foods with out many teeth!  One thing I love about baby lead weaning is that she is learning and challenging herself and developing skills and fine motor skills. By feeding herself she is control. She eats as much or as little as feels like at the time. She controls what is going into her mouth and how much. IF she puts to much in her mouth at once, then she gags and she learns not to put that much in her mouth. So far she has not choked on anything. she sometimes gags and clears it herself. I always sit beside her while she is eating. I watch her closely.

Babys gag reflex is a lot closer to her mouth then the back of a throat in an adult. So by feeding herself shes engaging this reflex and preventing choking. Babies who are fed purees on a spoon , we the parent place the spoon past this reflex and when they move to solids, the reflex has moved further back with age and they dont gag as quickly and it can lead to chocking.

Madelyn’s diet so far includes :

Toast and jam

Fruit – specially berries, banana, mangoes, peaches, pears , apples, papaya and avocados.

Steamed vegetables – Carrots are her favorite. Broccoli , cauliflower, Roasted vegetables like yams, potatoes and squash, sauteed veggies like mushrooms, peppers, onions , tomatoes, garlic .

Oatmeal

Rice

pasta

quinoa

fish/ sole and cod mostly.

chicken

sausages

pancakes

scrambled eggs with dayia cheese

we use coconut milk as a substitute when cooking or baking.

She is on a special formula for her milk protein allergy. She drinks nutramigen. We special order it from Vancouver just like my formula.

We omit dairy and milk from her diet. I dont cook with it and she has not had cheese or yogurt.  I make most of her food from scratch or fresh ingredients to avoid it. Any thing store bought i am very careful to read the ingredients so it does not contain milk soy or whey.

Most days I am cooking 3 different meals at breakfast and dinner. She does not eat lunch yet.  Cole has a regular diet, no allergies. Then Madelyn’s food , and my low protein. Though admittedly i have really let mine slide since the days i use to bake or cook or meal prep for me are now for her.

This has lead me to deal with some mixed emotions and thoughts surrounding having pku.

The other day I was in the kitchen making Madelyn some new foods to freeze. I was making her home made oatmeal bars ( oatmeal , water and fruit then baked in the oven) and some quinoa fruit balls ( 1 1/2 cup quinoa, 1/2 rolled oats and fruit of our choice, rolled into balls then baked in the oven for 15 mins) and i realized that I cant eat as healthy as her. I eat healthy for me, but nutrition wise, my diet is not as healthy. I cant even modify her recipes or make them PKU friendly. I dont even have anything similar in taste of texture. I have made such an effort to ensure Madelyn is eating healthy and having a variety of nutritious foods. A well rounded diet and striving to give her the very best so she does not develop issues with food like I did. I want her to have a positive relationship with food. I dont ever want her to feel how I feel. I realized i didn’t want her to feel shame when she eats. It made me sad, cause I thought back to my youth and remembered when i use to hide and eat alone. Because I felt shame. I hid in my room at meal times . and refused to eat at school in front of my peers as they always asked why my food looked weird or why i drank that stinky milk.

I developed weight issues and still struggle. I dont want to pass these onto my daughter.

Now that Madelyn is eating more and more, I am finding myself struggling with resentment towards having pku. To being angry and frustrated.   Baby lead weaning books recommend we all eat together or eat the same thing and that whatever i am eating should be safe for my baby to eat should she want to share or try from my plate. But I cant share my foods with her.

This morning that became more evident. She wanted some of my toast.  My low protein bread. With honey on it. So one babies cant have honey before age  1, 2 its white low protein bread and not very good for her. So I had to tell her no and she cried. She didn’t understand and it hurt my heart.

I dread having to explain to her one day, that mommy cant share her food, though we teach children to share most everything but food. Or why mommies food looks different , or why i cant eat what she is having. or when she reaches her little hands up trying to share her food with me and i pretend to eat it but dont actually. One day she will notice. One day I will have to explain to my baby girl that mommy is different and tell her about PKU. She wont understand at first, there will be alot of questions and I will probably have to tell her several times as she grows up.

I think back to when I was pregnant and my tolerance went up so high and I could eat real foods and the healthy and nutritious foods I had to choose from. The healthy choices and options that suddenly  became an option for me . Like oatmeal, oats, real bread and whole grains and rice. Not white sugary and full of carbs o nutrition. I realize now that those options are only available to me when i am pregnant.And I suddenly realize now why treatments like kuvan and peg pal are sooooo important. I am considering trying to make it through the kuvan trail again to see if i am a responder. If I am not , then hopefully one day I can try peg pal. I didn’t think i would ever want to. I use to think the diet and formula was enough and I wasn’t worried. But now I think , given the opportunity , I would jump at it.  I want to loose 6o lbs and I want to eat healthy and clean and still feel full. Something I struggle with on the low protein diet. I want to eat like my daughter. I want to eat oatmeal again.   I am learning so much more about nutrition when I thought I already knew so much and I am feeling more limited then ever and wanting to feel “normal!” I dont know anyone or myself can loose weight on this diet and still feel full and satisfied. I over eat because i burn through the low protein foods and fruits and vegetables way to quickly. I have way over the recommended calorie intake for a women of my age. But when I think about restricting myself , going back to limiting myself, going back to tracking calories and protein and phe . I think about how hungry I am. I feel guilty that I was able to excel when i was pregnant and stick to it so amazing for 10 months only to fall back after.  Then I think to myself, pregnancy was easier. She was taking everything she needed. As my pregnancy progressed  or when I got hungrier my tolerance went up. I had flexibility and choices even when restricting. I wasn’t stuck at 375 mg of phe and 1600 calories for the whole 10 months. I was having like 2000 calories and never gained more weight then what baby needed. Now I cant loose the weight and am stuck here.

So maybe if I responded to kuvan or to peg pal , I could have a more regular diet, with healthier options like oatmeal, whole grains,and proteins that could fill me up more with out packing on the weight or filling up on low protein pasta and empty calories!

So I get it now, I get why we are trying to fight, why we need this passed. I get it now, being on kuvan or peg pal will give me the chance at a healthier life , with flexibility and quality of life with out revolving and focusing on foods. With out every aspect of life being impacted by food. It is freedom. normalcy. Wouldn’t it be nice if I was a responder despite having classical pku and one day when we have coverage I can eat the same as my daughter, loose the weight, be more active and lead a healthier life style and set an example for my daughter and our family I could be proud of, that i have always drempt of. When I think of the future, I think of being that soccer mom, an active mom, a healthy mom who can keep up with my kids. That has the flexibility to grab a quinoa ball on the go, or a protein bar, drink a protein shake, have a multi grain bagel or sandwich , real rice, nuts and seeds? I cant ever see myself ever eating meat. or a meat alternative like tofu. Yuck! I am not big on chocolate or cheese either, or crap foods. But yogurt ? that might be nice. Oh and not to be pregnant to eat normal lol.

This is my battle, my eternal struggle. I am sure I will adapt and meet these challenges in raising Madelyn as we get to them.  Being responsible for my baby girl is a whole world of new lessons. I just hope I can keep teaching her, leading her , inspiring her and challenging her to be her very best. Most days I dont feel like I know what I am doing but I am trying my best to keep up to her. I never thought about the choices id have to make for her till she is old enough,. something as simple as what to feed her can have such a huge impact.

I can sympathize what is like for a parent with no diet challenges to raise a baby with PKU. I bet you feel the same as I do most days. Its a learning curve for us all and we just do our best. I am sure you are doing your best to. I tell you one thing, my beautiful girl is growing up so fast and everyday is something new. This first year has gone by so fast. Some days I am like wow , she is 8 months old, then others its like she is ONLY 8 months old. How will I teach her to be kind , to be a good person, to love and be respectable and give respect. to be honest, humble, compassionate. How will i show her this? The decisions I make for her  now , will impact a life time. Starting with Learning to walk, to talk, to run, and one day their will be puberty and other obstacles to navigate. Oh the joys of parenthood. Non PKU or not, the challenges are the same. how we deal with it not only shapes our children, it shapes them to.

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Managing the diet, That's my PKU life

Kids today.

Posted on by Amanda Horner

Though I am very happy to see how far treatment and quality of life for PKU has improved over the years , even just in my short 30 years  .

Then there is another part of me is jealous of PKU Kids today.  So much is geared to ward todays children.  Parents are much more involved and advocating to make sure they do not miss out and lead a normal life and have a good relationship with food and a healthy life style.

There is a much greater sense of community , thanks to social media. There are more resources for support and families are connecting more.

I did not meet anyone else with PKU until I was 13.

Today youth can log onto fb and look for recipes, share meal ideas and photos, take part in discussions, ask questions, seek advice and connect with people there age. Parents and caregivers can join groups and have the same resources available to them.

There has been advancements with tools for tracking diet like How much phe and apps.

Families are coming together to socialize and hosting events.

Even the foods have improved.  We have so many more choices and imitations of regular foods that kids dont have to feel left out eating anything different from there family and peers.

You want a cheeseburger like the rest of your friends? Here is a camburger and dayia cheese? Want to roast hotdogs while camping with family? Here are brooklyn dogs? Pizza? icecream? pancakes and waffles? bagels and pasta?

Lets not forget the formula? Chocolate, strawberry, vanilla, orange, tangerine, swirl, GMP protein. Powders, liquids, pre made mixes, bars, sachets, gels, shakes, puddings! Various brands and low protein companies. Variety ! Why not mix it up and have 2 different ones?

We have choice now!

Choices I did not have . Choices I missed out on. That I feel if I had of had from an early age I never would have cheated on my diet! I never would have hid my food from my peers, or thrown it in the garage when I got to school.  I may never have had levels above 12 . I would be saved from high level symptoms and hospitalizations.

Kids today dont need to face the battles I did. They wont feel different or left out.

So when I am at events and I hear parents lobbying to the government for more advancements such as kuvan so they have the quality of life they deserve , I stand in support but I also think.. What about the adults?

How do we achieve the quality of life we deserve when many of us have already learnt these bad habits, have a bad relationship with food? struggle with compliance?  when we are not use to some of the low protein foods because we didn’t have them so we developed a taste for ” regular foods” ? How do you make yourself eat the low protein rice that might as well be pasta made in the shapes of grains when you have the taste and experience of real rice?

Or what about the adults who have no aces to low protein foods, because they have either aged out of the government funding, or they have no private insurance?

My heart aches for the adults like me who ride the roller coaster of com pliancy. Who are stuck on the merry go round of high level symptoms or battle with side effects such as eating disorders or mental health issues developed by not staying on diet?

This is why I decided 8 years ago to dedicate my life and my voice to being an advocate for the adults. Sometimes its very frustrating being the only one up trying to get the attention we need.  In my experiance so many adults have shyed away from anything to do with the diet.  Its like pulling teeth to get them to part take in social events, come out to seminars, partake in the community.  Try new low protein foods and recipes and find there way back and value their health.

I see adults blame everything wrong in their life on their high levels from relationships to work and jobs and any failure and I get frustrated , and want to scream come to the events, get involved and be inspired and get back on diet.  It is so much easier now.

Or when a maternal PKU mom only returns to diet long enough to have her baby then goes right back off again because the temptation of a real cheese burger or meat is to alluring. She is not use to the textures and tastes of the imitation low protein options. Or insurance wont cover her now that shes had her baby. I fear for her and the impact that bad levels will be on her to parent.

My thoughts always go back to if only they had the opportunities kids today have.  If only we had all these options and choices as kids , we would be repping the benefits now. The next generations will learn from us and it will continue to improve.

Being born today with PKU is not a curse.  Today is a great time to have PKU and it will only get better.

In the mean time… how do we help the adults?  How can we bring them back on track? and improve their quality of life too?  I want to hear from you ! Please write me at my email or leave a comment to have your answer featured on a part 2 blog post.

 

 

 

 

 

 

 

 

 

 

 

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Managing the diet

High PHE Level Syndrome

Posted on by Amanda Horner

Even though, I have been on a well controlled diet with acceptable levels within range for many years, every now and then I still struggle.  AS I have talked about in the past 3 posts and make reference to through out my blog , as a teen I struggled immensely and suffered from High PHE level syndrome for years.  High PHE level syndrome is prolonged levels in a high range and the symptoms brought on by the high levels.

Now when I have high levels i am very sensitive to the slightest change and I can recognize it in my body with in days.  I can feel it the same day if I have eaten to much protein.

I have been asked a lot lately what id feels like. So I thought id share a post today about what high levels someone may experience and how it feels to me.

Headaches-  Different from tension headaches or migraines. When my levels have been to high and I have a high level headache. This headache feels like a full head pain. Like being knocked on the head. Strong behind the eyes similar to a sinus headache but wider. It radiates at the top of my head and it makes me feel tired . Sensitive to light.  I tend to hide out in my bedroom more .

Brain Fog-  I use this as a broad term to cover many different feelings.  For me having brain fog means that I have trouble focusing , retaining information,  finishing trains of thought.  simple problem solving.  It also effects my ability to learn . I also have problem recalling past information and facts.  I also have a very hard time with math.

Behavior-  I get agitated quicker. Overwhelmed and irrational.  I feel angry for little or no reason.  Or I cry easily. I take things the wrong way and become very emotional.  I call it feeling crazy, and all over the place. Like my head is spinning a mile a minute around me I cant keep up.

Mental state- I have struggled with depression for 7 years.  2008-2015. Due to multiple injuries and circumstances but made worse when my levels are higher. Also when my levels are high I have anxiety. Mostly about driving or being alone. I hate doing things alone or going somewhere alone. I wont drive certain distances, or go out after 3 and not after dark either.  I get panic attacks too.

Verbal- I tend to ramble more,  my writing is effected in such that i am more repetitive .  Friends and family can tell just by talking to me that i am off or not making sense. it is like I have a harder time articulating what I mean to say. it makes sense in my mind but dosent come out the way it was in my head.

Fine motor skills- I find my reaction times are effected and my reflexes. They feel impaired.

Physical- I find my chronic pain is increased .  It feels like an all over pain . My muscles feel heavy and inflamed. My joints ache. I feel like muscles are pulled or ripped. I have a very hard time relaxing.

 

When you are feeling like this it can be very hard to pull yourself out of the merry go round  . Thankfully I have a wonderful support system and am apart of an amazing community  and have built friendships and relationships that have gotten me though and held me up when i have fallen and helped me find my way again.  I know with my friends and family and my team behind me I can get back on track and I will !

 

 

 

 

 

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Managing the diet

Chances

Posted on by Amanda Horner

How many first, second, third + chances can one person have? Is there a limit? No!

Here I am again sitting before this screen writing my confession. A scene that seems all to familiar and equal parts shame.   The same struggle, the same bad habits, the same failure.

High levels.  High PHE levels. My current level is 14.5 . I am feeling it. You yourselves can probably tell just by reading my words. I find I am more repetitive trying to describe my point.  Or I drag on and on about the same thing. Rambling. Which is pretty much the previous sentence in different words.

Why was this so much easier when I was pregnant? When I was pregnant my levels where the best they have ever been. I was able to maintain them to.  By the end of the 10 months ( yes pregnancy is actually 10 months not 9 ) It was second nature and I went into the post partum period with confidence about maintaining my awesome control well into the future.

But one bad choice lead to old habits and a downward slope. One lazy over tired un planned bad meal choice lead to another and then the slope got steeper.

In fact I know I have already written a post about struggling to stay off track after Madelyn was born.

Things were suppose to be so much better PKU wise . My Madelyn providing the motivation to keep on the wagon. To lead by example in a healthier life style.

We have low protein food coverage now, and I have always drank my formula. So why is this so hard?

The high levels are clouding my ability to problem solve about how to start to get back on track. It seems daunting. Not to mention how hungry I am!

Then there are the physical symptoms. The headaches. Oh god the headaches. They really do put a damper on your mood. I have been much to lazy to long.  Quick and easy meals.

Larger and larger portions. To much white minute rice. To much mashed potatoes. Not enough fruit and vegetables. No Salads what so ever. Stuck in old patterns of eating the same thing day after day.   Sick of boring foods but to lazy or tired to meal prep and plan a head. Or lack of time. Its amazing how fast your day goes by between feedings and nap time and play time. I can only imagine how it will change as she grows even more. Or when she starts to crawl! Then I will really be in for it.

Now that she is starting to eat solid foods it is even more important that I learn to branch out and in coles words ” not be a lazy cook” dare to experiment.

I have always been so scared to experiment , being such a picky eater , i was worried if I didn’t like it , it would be wasted and we all know how precious and expensive food is. Specially low protein food.

I need to re focus going forward and make my first goal to get these levels down ASAP. I cant even begin to describe how it feels to see and feel levels this high after having levels under 3 for 10 months. I knew they where high based on how I am feeling ,but seeing it.. well thats the real shock to the system. Seeing it in the email from the dietitian made it right there in my face. I could not hide from it, deny it , or ignore it. There was that big bold number staring out at me. Calling to me and reminding me of my failure to stick to my goals and to do right by Madelyn. She deserves me to be at my very best so I can give her the best possible care and healthy life too.

After I get them down, and while getting them down, I need to find new ways to cook and prepare meals. To make things more exciting. To put my time management skills to the test and plan things out. Take the time to try new things.  One of my biggest challenges will be healthy pasta recipes since it will be my biggest staple for dinners and I am bored of the 3 ways I always cook it.  Also new ways to eat vegetables and incorporate  them and fruit into my day to day.  Other then just eating them raw  with dip.

So this is where I am again. This is the challenge ahead of me , with yet another chance to get it right.

As I always say ” one meal at a time, one day at a time” and ” every day is a fresh start and a new chance to do better than yesterday” words I need to learn to live by and not just speak.

Day 1 :

Breakfast:

Bettermilk

Low protein cambrooke omelette

Lunch :

bettermilk

Raw Vegtable platter

 

Dinner :

Bettemilk

Roasted veggies and Aprotein Penne Pasta.

 

 

 

 

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Madelyn

First meals.

Posted on by Amanda Horner

IMG_9141

Growing up with PKU your whole world revolves around food. Meal prepping, cooking, baking , measuring, weighing, calculating, and tracking.  So much so that it becomes second nature , specially now at my age. I have been managing my diet since I was 13 years old.  I dont really put a lot of thought into what I eat or the ” real” nutrition of it. My focus has always been on if its low protein and how much protein, vs calories vs phe.  As I have had said numerous times I have been pretty slack with my diet. Then I was pregnant. And focus changes to counting every single gram, every single mg of phe and keeping my blood and body safe to help this little human grow and develop safely.

After giving birth, the focus changed to bottles and formula for us both. Mls of how much formula she is drinking and how often. Checking her weight and making sure she is growing and meeting her milestones. So much so that I let my own diet slip .

Watching her grow and change every day leaves me in awe. She amazes me. She can sit with help now.  She waves, she giggles and says mama and dadda. She rolls around the living room and she reaches for us and she loves copper. We got for walks and she loves to explore. she loves to look around at people and observe.

Today we embarked on brand new adventure into the overwhelming and exciting worlds of solid foods. Madelyn tried baby organic oatmeal for the first time.  This opens the door to so many new learning opportunities for us both.  I was avoiding giving her solid foods till she was exactly 6 months as I read it was preferred due to their immune system being stronger and it helps prevent food allergies but she has been showing all the signs. So even though she has been showing signs for a while now,  I was uneasy and was trying to avoid it.  So I made the decision to try it and see what happens. She grabbed the spoon and chewed on it!

Ive been reading about nutrition for babies. I have been reading about baby lead weaning and what order to introduce foods and recipes.  Since Madelyn has a milk protein allergy we are making her food from scratch. I figured I already make my own foods that it would not be any added work to puree up fresh foods for and freeze them.  Trying to prepare myself for this day and what method to choose. I have decided to start with the baby organic oatmeal and then purees in the morning and then move to baby lead weaning.

The thing with baby lead weaning is you give them whatever you are eating but steamed or mashed and let them eat themselves and try the foods.  So it has made me start to focus on my own diet again and remind me the importance of nutrition and whole foods. I am learning more about the foods I dont eat and more about nutrition and meats and proteins to make sure she will get the best nutrition. I dont ever want her to worry about her health or have hang ups with food and dieting and weight and health. I want to improve my own habits and lead by example for her . I dont want her to ever worry about food like I have.. I want her to enjoy it and I want her to be healthy. I want us all to lead a healthier lifestyle.

 

Over the years I have developed bad eating habits, specially when I am struggling with my weight like now. I struggle with portions and making healthy choices. I prefar 3 big meals a day and lots of carbs and warm foods. I am a picky eater . I do not want her to pick up on my habits and now that she is getting to the age where she is really watching us and learning everyday its time to make those changes. Starting with baby steps and first meals.

I am learning so much of this for the very first time. I never thought before about feeding a baby and teaching them these lessons. Leading a healthier life for us all. I have cooked for Cole for years and for friends. but never thought about those early times, the first foods, the first tastes, and the first experiences that form the foundation and the base of a relationship for food. The do’s and the dont’s. The how to’s and the recipes !

carefully planning, preparing foods for someone other than myself. What order to introduce foods, how to cook , prepare, store purres. What foods to avoid. I read you try one food each day for 3 days to see if an allergy starts.  So today is offically day one of baby oatmeal!

 

a week ago she tried a peach from our peach tree. she took it from my hand and tried to put it in her mouth like everything else. She had no idea it was a food and got quit a shock with the fuzzy peel . She made the cutest face.

Then at a family lunch at a local restaurant last week she sucked on a cucumber from my salad. but today was the first real food, the first real taste, the first chew and swallow of many!

Madelyn is 5 months old and 11 days.  ( 23 weeks and 3 days! )  Here is a video from our first foods today.

Dont mind the Gilmore girls tv show playing in the background lol

 

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BC Residents and news, CanPKU, Events

3rd Annual Kamloops Walk For PKU

Posted on by Amanda Horner

 

 

Today, May 28th 2016 Brienna Wells and myself Co-Hosted the 3rd Annual Kamloops Walk for PKU at MacArthur Island Kamloops BC Canada. From 1:3o to 3:30 pm . We had around 60 attendees including the Honorable BC Health Minister and local MLA Terry Lake,  Kamloops City Council member Arjun Singh . As well as The President of Canadian PKU and Allied Disorders John Adams himself. Who flew in from Toronto to join us on this rainy overcast day.

We spent the first few moments socializing and mingling. I got to meet my daughter Madelyn to Terry Lake. She had just woken up so she was shy on smiles for the first part of the day.

We opened the event with a few works from John Adams , who presented Terry Lake with a friend of PKU award. Terry said a few words and talked about his part in our PKU community as well as how we met and what we have done so far , with mention of Kuvan in the future.  Councillor Arjun said a few words, He even mentioned he reads my blog!!!! What an honour!  After I thanked everyone for coming and how great it was to see so many supports. I thanked Bri for her hard work and dedication. This event would not have been possible with out her!  John then announced the walk and everyone headed out in small groups around the park.  Cole, myself, Bri and Amanda J stayed behind.  I did walk out to the end of the trail to meet everyone on their way back to take photos, and I had the pleasure of walking back with Councillor Arjun.  We where able to connect briefly and discuss some of my history with diet .  I do hope to keep in contact and further our conversation in the future.

After we enjoyed refreshments of cake donated by Costco and low protein cupcakes and donuts baked by Bri. Coffee and regular donuts donated from Tim Hortons. We had another chance to bid on the Silent Auction and then we wrapped up the event and announced our grand total.

Insert Drum Roll Here:

We raised 1500 Dollars for Canadian PKU and Allied Disorders INC !

The Event was a huge success. Our biggest yet. It was truly amazing to see so many families out showing their support of our community. It made me quiet emotional. I had trouble speaking and looking back now I wish I had of said more. OR at least taken Madelyn out of her Ergo carrier so she could see Terry Lake  , or we could have had a photo with her actually looking out.

Madelyn was awake until Terry Left then she passed out on my chest in her carrier till the end.

For those of you who are wondering, Madelyn is doing very well. She is the light of our lives and such a wonderful baby. The changes and advancements I see in her daily astound me.

If you had of told me years ago that one day  I would be standing in front of a crowd of PKU families , friends and supporters next to the BC Health Minister holding my baby girl on my chest I could not have imagined.  Madelyn is so healthy and she is because of my amazing control of my diet, which I could not have done with out the Low Protein Food Subsidy that Terry Lake made possible.

So in away, with out Terry Lake, Madelyn would not be with us today. He has changed out lives, and the lives of all the PKU patients in BC.  We are forever grateful.

So wraps up another annual PKU event. Chalked up as a great success and already has my wheels turning for next year.  Always striving for Bigger and better.  Ways to improve, things to change or add . We learn each time.

If you would like to host a PKU Walk-A-thon please feel free to contact me for advice or visit the new CanPKU website.

 

 

 

 

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BC Residents and news, CanPKU, Events, News

Kamloops Walk For PKU

Posted on by Amanda Horner

PKU or Phenylketonuria is a rare metabolic and genetic disease where people who have PKU are born with out the enzyme to break down an amino acid in protein called Phenylalanine into tyrosine.  The more protein they consume the more phenylalanine is consumed and it accumulates in the blood and causes neurological impairments leading to mental disabilities and brain damage.  PKU is a serious disease that affects the brain but can be controlled with a restricted low protein medical diet.  A person with PKU must drink a special medical formula, eat medical low protein imitation and chemically altered foods and test their blood regularly to keep phenylalanine levels in a safe and non toxic range. 

The PKU diet is for life. The is one drug currently approved in the treatment of PKU but it is not covered in most canadian provinces.  

 
when a women with pku wants to become pregnant it is recommend that they be on a pre conception diet for 3 to 6 months prior to conceiving. As levels in the uterus is 1.5 times higher in the uterus and can cause damage to a fetus.   If a women with pku is pregnant and suffers from high levels it can cause brain damage and physical defects to the unborn baby.  Blood levels must be maintained between 2 and 6 mg dl to maintain a non toxic environment and optimal growth development. 
 
 weather you are a women with PKU or or not, the low protein diet is very time consuming and challenging.  Many adults who have PKU struggle with depression and anxiety as well as complying with diet. 
 
All food even low protein medical foods all need to be weighed and measured , they need to be tracked by amount of phenylalanine per milligram .  
 
Every day a person with PKU must track everything they eat, weigh out all foods, and 
meet a daily intake of phenylalanine . They cannot be under or over their daily amount.  
 
Intake can be tracked by phenylalanine, grams of protein and calories.   Every gram of food, including oils, spreads, condiments, spices, fruits , vegetables , snacks,  desserts and everything has to be counted. As every thing has protein in it. 
 
If someone is not on diet or has control of there levels, they can suffer from a wide rage of side effects that can impact activities of daily living, maintaining relationships,  and quality of life. 
 
However if diet and control are maintained people with PKU can live a very normal life. 
 
Despite having PKU , I have gone to college, became a nurse and worked in long term care for 6 years and now have an 8 week old healthy baby girl!!!!
 
I also spend most of my free time volunteering for CanPku , advocating for PKU , hosting events,  and writing a blog about my life with PKU. 
There is approx 200 people in BC living with PKU. There are approx 8 families in kamloops that has a loved one living with PKU.

On May 28th 2016 we will be hosting our “kamloops walk for PKU” At MacArthur Island from 130 pm to 330 pm and we hope to raise  $1000.00 .

100 % of Donations will  donated  directly to Canadian PKU and Allied disorders INC to help fund education seminars, socials, patient suppots, research, and lobbying campaigns for coverage of medical supports in each province.

Please consider making a donation to support PKU and CanPKU.

CanPKU is not a charity so therefore we cannot issue tax recpits.

Please feel free visit the following links for our fb event page and our go fund me page :
Go Fund me page :
Fb Event page :
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PKU Photo A Day

May 4th 2016 #PKUPhotoADay

Posted on by Amanda Horner

2016-05-04 08.55.56

 

May 4th :Low protein foods

Here is a snapshot of some of my favorite low protein foods. This photo includes,  cambrooke bagels , maddys homestyle muffin mix, aproten pasta, cambrooke eggz,My morning breakfast cambrooke eggz omelet!   aproten cookies, my bettermilk formula, apples and plums!

These medically necessary foods make up the majority of the low protein diet. You are required to have a prescription to have access to these foods. You also must be followed by a metabolic clinic and attend regular appointments.    Low protein foods consist of chemically altered and artificial imitation foods. That are made to not have protein in them so therefore are very low in phenylalanine . Unfortunately most are high in carbs and refined sugars. Also high calorie.

There are several companies that specialize in the production of low protein foods.  The most popular is Cambrooke Therapeutics. They have many pre made and frozen foods.

I use to rely heavily on mostly baking mixes and pastas and made a lot of my own food from scratch.  This way I could control what was going into them.

Up until a few years ago, British Columbia Residents paid out of pocket for these medical foods. These foods are very costly. For Example a bag of pasta is 9 dollars. A box of baking mix is 54 dollars. 1 Box ( 1 serving ) of  imitation mac and cheese is 18 dollars, and a bag of rice is 21 dollars.

Thanks to CanPKU , Their team of volunteers including myself and BC Health Minister Terry Lake BC residents now have a low protein food subsidy of 250 dollars a month. We also now order foods from the National Food Distribution Center in Montreal and they have a freezer section so now I have access to the pre made cambrooke foods. The convenience of the low protein foods give me more freedom and time  to focus on other things. I use to bake food once a week on the weekend and make enough to freeze for the week. Now I can grab something from Cambrooke on the go.

My favorite foods are the Cambrooke Eggz, Aproten Pasta, Aproten Biscott cookies, Fruity Banana hot cereals, and the cambrooke pitas, pizza rolls, bagels , tortillas, and mix quick.

I also love the baking mixes by taste connections . I use it to bake perogies and english muffins.

I also frequently bake my own recipes for pizza pockets , pizza , apple strudels, and buns with wheat starch.

I regullary acess low proten recipe sites such as http://www.Cookforlove.org and Cambrooke foods to help make meals more interesting and keep a variety in my diet.

 

 

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Managing the diet, PKU Photo A Day

May 3rd 2016 #PKUPhotoADay

Posted on by Amanda Horner

PKU infographic and facts:

wheel

 

The Diet and Formula are the oldest and most well researched and tested treatments for PKU.

When PKU was first discovered in the late 1960s , treatment started with the amino acid formula.

Secondly it was the low protein diet as the main treatment for PKU.  Patients with PKU where placed on a restricted diet with limited protein.  The less protein in the diet, the less phenylalanine in the blood.

They actually use to think that PKU patients could come off the diet after age 7 as they use to believe the brain stopped developing. Patients who were taken off diet at such a young age, now suffer from delays, developmental and social disabilities. Thoug they are not mentally handicapped. Being taken off diet as children has impacted their ability to be high functioning , maintain relationships, hold steady employment,  impaired reading and writing skills , learning troubles, or struggle with depression and anxiety.  As well as challenges maintaining diet and compliance to diet and  managing lower phe levels.

It was in my generation when scientists finally had enough evidence to prove Diet should be for life. There is no cure for PKU. You do not outgrow it, and your brain never stops developing.

The Low Protein / Low Phe Diet consists of :

Mediabolic amino acid formula

Medically necessary Low protein food products that are artificially made not to have protein or phenylalanine in them.  These foods range from baking mixes, Pastas, pre made frozen foods made specially by Cambrooke foods and more.

Limited amounts of Fruits, vegetables, fats , spreads, oils and spices. Some hard candies and fruit juices are also low in phe.

Foods high in phe or protein such as Meat, Dairy, Fish / Shellfish, Nuts / Seeds, Legumes,  beans, peas , Soy, Tofu,  eggs, grains, and regular pasta must be avoided.  Also higher protein vegetables like corn and potatoes must be limited.

 

 

 

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Low pro food / cooking, Managing the diet, PKU Photo A Day

May 2nd 2016 #PKUphotoaday

Posted on by Amanda Horner

 

2016-05-02 09.40.26

May 2nd 2016
‪#‎pkuphotoaday‬ bottoms up/formula

One of the main treatments of phenylketonuria (pku ) is a metabolic amino acid formula.

It was the first treatment for pku and is essentially a medication. It requires a prescription and dosage is based on body weight.

All of my life I am required to drink this formula 3 times a day
The formula is made up essential amino acids , vitamins , minerals and protein with out the phenylalanine that I am allergic to. My brain and my  body rely heavily on my formula as it is essentially my life support system.

As a child our choices were very limited and my formula was made from potatoes starch . We flavored it with strawberry nestle quick.

Now for the past 3 years I drink this new gmp / whey protein
formula called bettermilk and in flavor it wit Mio water enhancers !
I’m very lucky that I enjoy my formula and have never had issues drinking it. I drink 2 packages in the morning with 16 oz water, 1 package at lunch with 8 oz water, 2 packages at dinner with 16 oz water and each time I pick a different flavor of mio too add. My favorites are the sports , blue and orange!

 

It took me a while to adjust to the different taste and texture of Bettermilk. In fact at first I could not stand it. I switched to it and switched back a few times. But the benefits of GMP and bettermilk made me want to give it another try. It is very good for digestive health and I have always had tummy troubles and struggle with IBS. So it has really helped me.

Many people ask me what it tastes like, I find this a difficult question since I dont have anything to compare it to. So What I can say, is that I love it! It is sort of creamy and is suppose to be an imitation of real milk. It took me a while to adjust to that because it does not have the grittiness of regular PKU Formulas.

So what is GMP?

GMP is a naturally occurring whole protein for the dietary management of PKU . I believe it is made during the process of making cheese . Is the only form of naturally occurring protein that does not contain phenyalaine in a pure form. There is some phenylalaine in bettermilk. Approx. 23 mg per package. So be sure to account for it in your daily intake!

The formula has always been fully funded by each provincial government across Canada.

 

#PKU #phenylketonuria #MPKU #lowproteindiet #dietforlife #PKUAwareness #lowlevels

#Lowphe

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