Low pro food / cooking

Country sunrise chicken nuggets

Posted on by Amanda Horner

2014-03-15 16.42.53 2014-03-15 17.00.09 2014-03-21 17.19.17

 

PKU perspectives has a new line called Country sunrise. They have mashed potatoes, scrambled egg and omelette mix, hot dogs,  sausages, mushroom burger mixes, and more!

They are so easy to make. for most you just add water , and oil.

I have been eating the scrambled eggs for a while and adding cheese, mushrooms, onions and garlic.

I ordered the chicken nugget mix with my last order and was really looking forward to trying it. I saw a post online in one of the PKU groups that my pku friend and fellow Canadian PKU adult Carrie hall of the chicken nuggets that she made and coated with corn flakes ceral.

So I thought id try the same. Only I decide to bake them in the oven. They where good , but alittle to dried out and crumbled easy. I also had rolled them into balls, so they where a bit thick. I dipped them in sweet and sour sauce.

 

Tonight I made them again but I flattened them and pan fried them in a little bit of olive oil. They tasted much better and did not fall apart. I am defiantly a fan and will be making this dish again. Makes a great finger food too.

I like to have them at lunch with celery sticks, cucumber and other vegetables. They also taste great seasoned with sweet chili sauce or dipped in ranch salad dressing.

 

 

2
Epicure, Low pro food / cooking

Low Protein Cooking with Epicure!

Posted on by Amanda Horner

As many of you may already know I am now an Epicure Consultant. I am truly enjoying this new path! I am still working as a casual but due to some health concerns I am no longer in my night line and back on the casual list. So I am focusing my time between my health, the biggest loser program, working casually as an LPN and building my epicure business.

I am truly enjoying working with epicure and it has really broaden my diet as well as my palette. It has created so many new and exciting ways to cook and I am having a blast making low protein dishes more exciting with the tools I now have through Epicure.

I got into epicure because of the great quality of the product and the diverse line of spices, herbs, dips, and other products. I have been enjoying reinventing my favorite meals and experimenting with new ideas.  Epicure is finally a product I can stand behind that is not just some other pyramid scheme. It is local , organic, gluten free, low sodium and peanut free. Grown on a farm in my own home town.

I did not join it with the intent of a get rich quick scheme or even to make that much money. I got involved to take advantage of the products in my own home and share something i love with other people.

Since Joining Epicure I have hosted one catalogue party and reinvested all my commission into buying more product for cole and I . I have one outside party booked, and have been cooking with the spices, dips and sauces every night!

Some of my favorite low protein dishes to enhance with Epicure are the following:

salt. 2014-02-09 19.01.10 2014-02-09 19.08.56 Pasta salad with the Little Italy Epicure spice.

2014-02-14 18.13.35 2014-02-14 18.13.46  Low protein rice pilaf with the chicken boulioun and garlic sansel seasoning on the veggies

2014-03-03 17.07.27 2014-03-03 17.17.53  low protein pasta with the little paris epicure spice

2014-02-01 01.51.04 Guacamole low protein style

2014-02-04 17.04.46

2014-02-04 17.22.24 Roasted potatoes and vegetables with epicure spices. The meat is for cole of course.

2014-02-05 16.35.34 Stuffed mushrooms with Daiya cheese and garlic sasel seasoning

2014-02-05 16.43.30 2014-02-05 16.51.07  mashed potatoes with the 3 onion dip

2014-02-06 07.11.59 low protein scrambled eggs with herb garlic sea salt.

I would be happy to share any of my recipes with you if you are interested , and I will of course be adding more photos as I go! These are just a few I wanted to share for the time being.

Cant wait to get back into the kitchen and try my next recipes.

 

2
Levels

Phenylalaine Levels

Posted on by Amanda Horner

I have had quit the journey with my Phenylalaine levels over the course of my PKU treatment. I was born with the highest recorded levels in BC , I am told my recorded phe level for my diagnosis was 60 mg/dl . I have classical PKU and am very sensitive to my PHE levels. Anyone who knows me , knows that it has been a life long battle. I have struggled with keeping my levels in range all my life. As a teenager I suffered from high level syndrome and had very high levels. I cheated and lied about it. I had a lot of side effects. I spent time in BC Children’s Hospital to be withdrawn from my dangerously high levels.  As an adult my levels have been some what stable but like anything , they are a up and down and dependent on fiances, sickness, stress, and just life.  Now my body is so sensitive to the slightest changes. I can feel it when my levels are high. I can feel it all over my body, even within a few hours. I never could tell before and would argue my friends and family that I felt fine.  I can feel the slightest change and I know when my levels are high.

I am at a point in my life and in my relationship that I am thinking about having a baby in the next year or 2 and have always wondered if I could have a successful pre-conception diet with levels constantly in range. I never felt that it was a possibly with me due to the nature of my levels, now with the new low protein food coverage in BC, having a child has become a real possibility so I am focusing more on my levels.

I find that I do better with my low protein diet when I am doing blood tests regularly , or once a week. It keeps me accountable. I have learnt about my personal patterns, trends and I have learnt to listen to my body. However I thought it would be interesting what my levels would look like on paper. After emailing my clinic today, I finally know . I find it so interesting and just wanted to share it with my followers.

 

Here are all my blood phe levels since 2004.

Test Test Date Result
phenylalanine 13-Aug-04 11.8
phenylalanine 23-Sep-04 16.9
phenylalanine 10-Nov-04 11.5
phenylalanine 30-Nov-04 14
phenylalanine 10-Feb-05 10.4
phenylalanine 06-Jul-05 15.4
phenylalanine 29-Dec-05 12.4
phenylalanine 29-Apr-06 8.2
phenylalanine 27-May-06 10.8
phenylalanine 08-Jul-06 7.7
phenylalanine 05-Aug-06 1.8
phenylalanine 02-Sep-06 2.3
phenylalanine 09-Dec-06 8.6
phenylalanine 16-Jan 6.9
phenylalanine 03-Feb-07 6.9
phenylalanine 23-Jun-07 6.3
phenylalanine 23-Jun-07 6.8
phenylalanine 22-Sep-07 9.4
phenylalanine 03-Nov-07 7.5
phenylalanine 12-Jan-08 11.6
phenylalanine 26-Jan-08 13.7
phenylalanine 13-Feb-08 6.3
phenylalanine 14-Feb-08 6.8
phenylalanine 17-Feb-08 5
phenylalanine 26-Mar-08 15.1
phenylalanine 09-Apr-08 7.6
phenylalanine 17-Jun-08 1.8
phenylalanine 07-Sep-08 6
phenylalanine 23-Sep-08 5.8
phenylalanine 04-Jan-09 8.1
phenylalanine 12-Feb-09 9.7
phenylalanine 12-Mar-09 8.7
phenylalanine 25-Apr-09 7.9
phenylalanine 23-Jun-09 7.5
phenylalanine 22-Jul-09 11.4
phenylalanine 15-Aug-09 11.2
phenylalanine 03-Oct-09 8.6
phenylalanine 04-Dec-09 9.3
phenylalanine 13-Dec-09 8.1
phenylalanine 04-Mar-10 14.5
phenylalanine 15-Jul-10 11.2
phenylalanine 27-Sep-10 5.9
phenylalanine 03-Oct-10 4
phenylalanine 10-Oct-10 5.5
phenylalanine 02-Jan-11 9.5
phenylalanine 09-Mar-11 7.1
phenylalanine 01-Apr-11 11.2
phenylalanine 05-Apr-11 10.2
phenylalanine 12-Apr-11 10.1
phenylalanine 08-Aug-11 10
phenylalanine 14-Oct-11 11.2
phenylalanine 13-Nov-11 12.6
phenylalanine 02-Dec-11 12.2
phenylalanine 07-Dec-11 12.4
phenylalanine 19-Dec-11 9.9
phenylalanine 07-Jan-12 8.1
phenylalanine 14-Jan-12 11.2
phenylalanine 21-Jan-12 9.8
phenylalanine 25-Jan-12 8.3
phenylalanine 01-Apr-12 14
phenylalanine 07-May-12 9.7
phenylalanine 21-May-12 8.9
phenylalanine 28-May-12 6
phenylalanine 07-Jun-12 7.7
phenylalanine 15-Jun-12 8.5
phenylalanine 21-Jun-12 8.2
phenylalanine 01-Oct-12 8.6
phenylalanine 01-Nov-12 3.9
phenylalanine 15-Nov-12 2.4
phenylalanine 21-Nov-12 2
phenylalanine 28-Nov-12 5.7
phenylalanine 01-Dec-12 7.7
phenylalanine 08-Dec-12 10
phenylalanine 13-Dec-12 6.6
phenylalanine 21-Dec-12 7.1
phenylalanine 28-Dec-12 5.7
phenylalanine 05-Jan-13 7.2
phenylalanine 12-Jan-13 5.6
phenylalanine 20-Jan-13 6.6
phenylalanine 27-Jan-13 6.5
phenylalanine 01-Feb-13 6
phenylalanine 09-Feb-13 4.6
phenylalanine 16-Feb-13 7.3
phenylalanine 01-Mar-13 8.4
phenylalanine 15-Mar-13 7.3
phenylalanine 23-Mar-13 8.1
phenylalanine 29-Mar-13 11
phenylalanine 01-Apr-13 11.9
phenylalanine 21-Apr-13 9.6
phenylalanine 02-Jun-13 8
phenylalanine 12-Jun-13 4.8
phenylalanine 16-Jun-13 4.7
phenylalanine 16-Jul-13 3.5
phenylalanine 23-Jul-13 1.5
phenylalanine 05-Aug-13 3.6
phenylalanine 08-Sep-13 4.6
phenylalanine 03-Oct-13 5.2
phenylalanine 17-Oct-13 8.6
phenylalanine 01-Dec-13 9.8
phenylalanine 21-Jan-14 3.3
phenylalanine 04-Feb-14 4.4
phenylalanine 13-Feb-14 6.3

I find this so interesting. I can look back at this list and I know that it is snap shot, how much these little numbers represent is the difference between brain damage , sickness , and health.

 

I can tell you in 2004 , it was before I met Cole and was still in high school. I was coming to the end of my illness and constantly high levels. I was coming out of some serious traumas and starting to accpet my PKU and what it truly meant.

I met Cole in July 2005, we moved in together in June 2006. You can physically see my levels begin to drop after we moved in with each other. Cole has been so supportive of my life, and my PKU. He taught himself early on everything there was and has always encouraged me to be healthy . Cole inspired me to get healthy and to care more about myself and my body.

2008 is when I began on my path to PKU advocacy and started working on my first PKU Walk-A-Thon, It is when I finally opened up to my friends about my PKU . It is when I began to become interested in treatments, research, advocacy and the future of PKU. It is when I first joined facebook and started to meet other people around the world who shared my experiences.  However it is also when I had my accident, so there are some rocky times and not everything in my life was stable.

2009 and 2010 is when I was taking my LPN course in college to become a Nurse!

2011 and 2012 where my last 2 years in victoria, working casually as a nurse, dealing with depression, and anxiety but managing ok.

2013 was my first year in Kamloops.

Looking at this list I can see how much life has effected my levels, where I was at and where I have been and how far I have come. What you do not see is prior to 2004. From 1999-2003 where my levels where as high as 23-26 mg/ dl

My journey with my phe levels and the close relationship I have with my body has taught me much about my health. I understand that everything is connected and the impact life can have on levels, but that levels can have on life. I feel that my experiences have made me who I am today and though I wish I could say that levels are good, and that I wish I never suffered long term permit damage, I have an I have accepted it. I regret what I put my body through , the risk I put myself through and what I did to myself. I wish I could change it and have never fallen off track with my levels, BUT it has made me who I am today. I know now how important it is. I know what can happen. I have experienced the bad and the good and I feel like It has made me a stronger better person. NO one should have learnt the hard lessons I have had to learn , but looking back I am glad that I have. Now I can use my experiences to help others never get where I was. All I can do is take one day at a time, each day as another chance to do better for myself, my health and my body. To learn and to grow and be better. To never get to where I was again , and that makes it worth it.

I hope you find this snap shot as interesting as I have, if you have any questions or comments please feel free to leave me a message and I will do my best to get back to you!

 

 

 

 

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facebook

4 New PKU facebook Support Groups.

Posted on by Amanda Horner

Here are 4 new facebook groups created this morning. If you are interested in joining copy and paste the link into your facebook search bar and send the group a request to join.

These groups are only for PKU patients.

New friends and family PKU group coming soon.

Group 1:

Canadian PKU Preconception and Pregnancy Support Group:

For Women with PKU it is recommended that they follow a low protein restricted diet for 6 months prior to conceiving and for the duration of the pregnancy. To prevent damage and mental retardation, maintaining levels between 2-4 mg/dl is considered safest for the women and her unborn baby. This group is for Canadian PKU women who are either thinking about becoming pregnant, who are pregnant or who are already a mom. A place to share experiences, stories, exchange information and ask questions. This is a closed group. All posts are confidential.

this group can be found at the following link :

https://www.facebook.com/groups/1448387172060994/

Group 2 :

Canadian PKU Women’s Only Support Group.

All new Canadian Women’s PKU support group. For Female patients who they themselves have PKU. A confidential closed group to openly discuss anything related to living life with PKU.

This group can be found at the following link:

https://www.facebook.com/groups/216795168510508/

Group 3 :

PKU Men’s Only Support Group

All new PKU Men’s only Support group. A closed private and confidential group for the Men of PKU to talk openly about life with PKU from a Man’s perspective.

This group can be found at the following link:

https://www.facebook.com/groups/420227808123783/

Group 4 :

Canadian PKU Men’s Only Support Group

All new Canadian PKU Men’s only Support group. A closed private and confidential group for the Men of PKU to talk openly about life with PKU from a Man’s perspective.

This group can be found at the following link:

https://www.facebook.com/groups/1427941864112824/

We hope you enjoy these new groups and hope they become a valuable tool in the managment of your PKU life.

If you have an idea for a new PKU group on facebook and would like some help making your idea a reality please feel free to message me for support!

Amanda

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That's my PKU life

Reluctancy

Posted on by Amanda Horner

I am sorry that I have not posted in quite some time. Things have been hectic and I have been very busy with work, the biggest loser program and home things.  Also I have had massive amounts of pain, and a small knee injury last week that set me back in my program.

I am enjoying the biggest loser program. We are in week 5 today, and today is also weigh in and measurements day. I have currently only lost 1.1 lbs and have been working so hard. So I am feeling discouraged and frustrated. My mind is fighting my body wanting to push forward, not give up , work hard and get the results. My body is fighting back with new pain. My current pain management is no longer sufficient and I am having to try new things.

so this week I had an assessment done at a chiropractor. Which I was reluctant to do as I felt that in the past Chrio has made my back worse. However one of my personal trainers talked me into it. So I made an appt last Tuesday and  she informed me that I tested positive for the early signs of osteoarthritis with degeneration in my hips. She feels that a lot of my back pain is no longer muscular or from my disk, its from my hips pulling me down. I tested positive for osteoarthritis to almost all my joints, including my neck from c2 to c6 , my spine, my left shoulder, my lumbar back and left knee , ankle and foot. So next week off to x-rays to confirm.  The Chiropractor recommended glucosamine sulfate or collagen supplements but they contain PHE and I am not able to take these. Tylenol gives me no relief.  After leaving this appointment I called cole and talked it over with him, and my physio and personal friend in Victoria that has been following me for 6 years. We all agreed that it made sense. I must admit I never considered it, the thought never crossed my mind. I am not upset or disappointing because I can understand it and it makes sense. I knew that I was at risk with my PKU for osteoarthritis and osteoporosis I just  thought I was to young to get it now. I thought I still had many years. Unfortunately it is not irrivesable so all i can do is maintain and do my best. Working with the Chiro and my massage therapist for therapy and maybe look into some anti inflammatory foods and adding them to my diet.

I would really like to see my weight start to drop , I really want to be working out more, like everyday . I plan for it and attempt but then my pain makes me take rests days. 5 weeks in I was really hoping for some obvious changes. If I was doing this on my own, I probably would have given up by now. Luckily being apart of this program I have support from my personal trainers and they have been very supportive. Helping me work on my core, modifying exercises to get me though the pain, stretches for before and after and sometimes just let me rant.  I am determine to make week 6 a better week and start seeing some results. Fingers crossed! One day at a time right?

 

This week comings goal, get back into yoga and back into the pool! with 3-4 sessions with my personal trainer and cardio everyday!

1
PKU Adoptions

Looking to Adopt?

Posted on by Amanda Horner

Finn

This week there was a message that went out to the global PKU message listserver regarding 2 baby boys with PKU looking for their forever home and adoptive parents.

“There is an adorable 2 year old boy with PKU available for adoption.  It was detected early and he is on his special formula and diet.  He is developing on track, can run and climb and talk. If you want more info, email  There is an adorable 2 year old boy with PKU available for adoption.  It was detected early and he is on his special formula and diet.  He is developing on track, can run and climb and talk. If you want more info, please email Kathy@wiaa.org .  I tried  to attach a photo but am not sure if it attached. There is also a short blog about him  and video here http://wasatchadoptions.blogspot.com/ You have to fill out a request for password. He is listed under China and there is an older picture of him here http://ourlittlestmatryoshka.wordpress.com/”

If I could make this work, I would adopt him in a heart beat. I think I am a very good person to adopt a PKU baby, I dont think it would be challenging and I know I could provide him a safe loving home , where he can get the quality of life, and treatments that he would need to live his life to the fullest. I have a lot of love to give and would love to give this little man a home and family. However I know in my heart, Cole is just not ready. For a biological baby or to adopt. It is a a huge life long commitment and responsibility.  Since I cannot adopt this beautiful Child, I am posting this in hopes of helping Connect this child with his future family.

2
Epicure

Amanda’s Epicure Selections!

Posted on by Amanda Horner

I just joined Epicure to be an consultant. with my Best Friend Laura Stanford of Laura’s Epicure Selections. I am so excited and anxiously awaiting my kit.

I Love Epicure for everything from the quality of the products, the rich flavours of the spices, the delightful tea, the delicious  easy recipes. To it being a local and Canadian Company. Started right in my home town , Victoria BC.
The reason I joined Epicure is so I could share the products with my friends, family & Community.  I can introduce others to a healthy way of cooking at home. While enhancing my own special metabolic PKU diet.
Epicure means to my family and I, having access to the benefits of tasty products and knowledge to enhance the way we eat at home, host family and friends, increase the variety of healthy nutritious meals in our diets.

I look forward to “spicing” up my PKU low protein diet with these products. I know its going to give me such a variety of new ways to cook and make my diet more interesting again.  I am hoping to use the recipes from Epicure and convert them to low protein! I will be sure to post and share my creations.

If you are interested in Epicure please feel free to like my page on facebook or visit my Epicure Website.

Facebook FanPage :

https://www.facebook.com/pages/Amandas-Epicure-Selections/571351512956932

 

Epicure Consultant Webpage:

http://amandacosburn.myepicure.com/

0
BC Residents and news

Pedal 4 PKU.

Posted on by Amanda Horner

I am so excited about Avery’s Ride for PKU and so honoured to have her Uncle Kevin take on such an amazing fundraising and advocacy event.  This is sure to catch the eye of the government, the people, and the media. I am sure it will bring much more needed awareness to PKU and am looking forward to helping out any way That I can.

 

I am offering to host Kevin if he shall chose. I also and offering to host and organize an event in Kamloops when Kevin rides though. Maybe If i am in shape enough by the time he reaches here Cole and I can meet him on our bikes!

I also hope to Collect Donations to donate to Kevin and CanPKU.

 

I am also going to reach out to Thompson Rivers University and my nursing student friends to see if they would like Kevin to guest speak on PKU , while he is in town.

There are many ways we can all show our support to Kevin, Avery , PKU and CanPKU. For more details on how you can support this event or on the ride across canada please check out the website at : http://www.rideforpku.ca/

One of the major ways you can all help is by using your Twitter account (if you have one) to spread the word.  Please post one or more of the following tweets to spread the word

Suggested tweets:

  • ·         We are happy to announce Avery’s Ride for PKU! Ride starts in #Victoria June 7th. Follow her Uncle’s journey here @Averysridepku #cdnhealth
  • ·         #PKU uncle will cycle across #Canada in 71 days to raise awareness and $25,000 http://bit.ly/1czLeYi #cdnhealth #cdnpoli #rarediesease
  • ·         @Averysridepku will travel coast to coast to make a difference for those living w #PKU. Find out more & support here http://bit.ly/1czLeYi
  • ·         “a cross-Canada bike ride would be a great way to advocate, raise awareness & fundraise for those living w #PKU” @dube_kevin #cdnhealth
  • ·         “There is not a single province/territory in this country that doest need to improve #PKU funding in some major way” @johnadams51677
  • ·         Help support @Averysridepku!! Find out more here http://bit.ly/1czLeYi#pku #rarediease #cdnhealth #cdnpoli

 

I will do my best to Blog about the Ride , events and details along the way! So be sure to check back  :)

 

Your PKU Friend Amanda C

 

0
Avery's Ride for PKU, CanPKU

Avery’s Ride Across Canada for PKU!!

Posted on by Amanda Horner
7,382 km
Across Canada
Saturday, June 7 to Sunday, August 17, 2014
Traversée du Canada
Du samedi 7 juin au dimanche 17 août 2014
To learn more, please visit:
Pour en savoir davantage, veuillez visiter :
To donate:          Pour faire un don :

153

Dear  Amanda,  

 

Hello, my name is Kevin Dube and this is my sweet little niece Avery. She was born on August 24, 2013 and was diagnosed with PKU just a few days after she was born.
In June, I will embark on a journey across this great country.  My niece is my inspiration for this ride, however, this is also a national issue and I hope my ride across Canada will:
Raise awareness regarding PKU;
Advocate so that better coverage for medical food, formula and other treatments may be available to all of those who have PKU, including Avery;
Raise money for Canadian PKU & Allied Disorders (www.canpku.org) to help them accomplish their goals; and
Promote a sense of community for Canadians living with this rare disorder.

There are many ways you can help, including:

 

– Organize a local event (such as a picnic) at any of the route stops;

 

– Volunteer at a local event;

 

– Attend a local event someone else organizes;

 

– Be a driver for the support vehicle for the whole route or whatever part you can manage;

 

– Ride-along on your bike for a portion of the Ride

 

– Offer food and/or lodging for Kevin and the support driver if you live in or near one of the stops;

 

– Donate gas, hotel or restaurant cards to the Ride (remember that you can cash in Air Miles™ or other rewards points to obtain these for free!);

 

– Make a donation atwww.corddonate.ca/AverysrideforPKU (you will receive a tax receipt for any amount over $10);

 

– Forward this information to your friends and family members to see if they are interested in helping with this exciting project;

 

– Post the link towww.rideforpku.ca  on your Facebook page, or tweet about it (follow us @canpku);

 

– Find out if a school in your area is interested in having Kevin speak;

 

– Reach out to any contacts you have with the media, business, or communities groups to promote this event or become a sponsor (check out the Sponsorship Packages for this event posted atwww.rideforpku.ca/english/sponsors/)

 

Please let us know how you can help make this wonderful event a success by contacting the CanPKU Secretary, Tanya Chute (Tanya.chute@canpku.org) or Vice President, Nicole Pallone (nicole.pallone@canpku.orgor 250-910-6426).

 

 

0