That's my PKU life

Friday February 22nd 2013

Posted on by Amanda Horner

Well we have arrived in Vancouver for BC PKU 2013 tomorrow!!! we picked up Amanda J at 730 and left Kamloops around 8 am. We arrived in Vancouver at 12 noon. We went for lunch and starbucks then we had our clinic appts. I talked to Taryn my dietican about KUVAN again , and future pregnancy  I learnt some information before that I did not know before. Like when pregnant the babies levels are 1.5 higher than the mothers. This is why they recommend that my levels be 2-4 . As well Cole can be tested to see if he is a carrier but if we dont care if our future baby has PKU then it dosent really matter. There are 2 tests. The first test is not as reliable he would come into clinic and they would load him up with protein ( phe) and take his blood. Or we could pay for a Genotyping tests. This is not covered by medical and costs 800-1000 dollars.  So its ultimately up to cole but he dosent care if the baby has PKU either.  Also There is new information coming out that recommend pku levels should be aimed at 6 mg/dl or 600. 

Also I switched back to bettermilk on Monday and I am so so very happy! Its creamy again and tastes fantastic. They fixed it! So now I am drinking 2 packages with dinner and lunch and my green smoothie for breakfast!  for my 2 pkgs of bettermilk its 23 mg phe and 280 calories.  I am also flavoring it with MIO – its an artifical sweetner made with Surculous and has no PHE, no protein and no calories. There are many diffrent flavors its been great. Last night I had mango, today I had strawberry and the other night I had berry pomagrante. Its going to work out so well for me and I am very happy! 

Also on thursday was my LIVE radio interview in kamloops at 610 AM Radio NL on the Jim Harrison. I was so nervous and I totally screwed up a few senstances with my nerves. I had 8 mintues I got there and went right in!  I have posted the link on my facebook fan page and here on my blog! IF you listen to it please let me know what you think! 

 

Well thats all for now! i am super excited for the event tomorrow. I will be live tweeting during the event with the hash tag #BCPKUDAY2013.  you can follow me at my handel @Project_PKU 

the event runs from 9 am untill 5 pm. We have a great line up of speakers, diffrent low protein vendors and will be having  a press release at  11 am for the media and some important news in the PKU community. This is not an event I would want to miss ! if you are coming to the event please come by and say hi :) 

Also bring your pennies! we are having a pennies for PKU Drive! 

We are going to head down for dinner soon with Amanda and my friend Claudia may join us. Tomorrow night we are meeting my old friend Olly for a double sushi date! Olly has PKU like me and is the very first person I ever met with PKU when I was 13 years old at my first admission to BC childrends hospital. he was a big influence and a great friend during that hard time of my life. I am looking forward to seeing him :) 

I am so looking forward to not being the only adult attending the event tomorrow! My friend Kim whom I met in 2008 in Victoria at the first walk a thon I held and is also an RN is coming down from Kelowna and a guy a year younger than me,  who just moved here from Ontario.  I am not sure if anyone else is coming but I look forward to finding out! 

I will be the event photographer tomorrow so be sure to check back for photos by the end of the week! 

Sunday morning we head to Victoria to visit my family for a few days! ( that’s a surprise though they dont know yet! ) 

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That's my PKU life

February 19th 2013 1:28 am

Posted on by Amanda Horner

Night shift tonight at work so thought id would take the chance to update my blog. I have not been sure really what to talk about as of late.  I feel like my posts are repetitive and mundane  usually just updates on what has been going on. 

so lets see where to begin? My smoothie challenge is going well! Day 5 and Its been better than i thought. I must explain a bit more about this challenge as a few people have asked me about it.. It is not a fast. I am not just having smoothies. I am having my formula and eating regularly  The purpose of the smoothie is for the vitamins, nutrients , for the health benefits and to help me have more variety in my diet. The Challenge part is to have one a day, even if you are a picky eater like me and dont like alot of foods. To be open minded and give it a try. That has been the learning experience for me. I am a very picky eater thats why I did this.  Young and Raw sends out the recipes every night at 6 pm and the variety is amazing.So many thing I would not have thought about putting in a smoothie.. like celery??? and cucumbers? I thought you could only juice those. Luckily I have a good blender. My smoothies are not chunky and the tastes are not what I expected. So far day 3 smoothie was the hardest I think I used to much Ginger , and it was  parsley, celery, cucumber, ginger, and lemon all together! so it was quiet tart and strong! took me about 40 mins to get it in. I would have not done that before. I would have tasted it and gave up if I did not like it. Day 4 was my favorite smoothie. Today’s smoothie is lemon , lime , oranges, celery and spinach. That will be interesting after a night shift! I have been taking photos and posting them on my fb fan page along with the PHE and Calories. I also post them in the Young and Raw group on fb.  The recipes so far have been using coconut water. I got organic coconut water from the new coopers by my house and I was not a big fan of it the first few days. I tried it by itself first and spat it out! WOW! not what I expected and I do like coconut flavor things. The first 2 smoothies I could really taste it. But I didn’t taste it at all yesterday. I wanted to give it a good try since its suppose to be more hydrating then just plain h20 and it helps absorb the nutrients in the smoothies.   

So what I have been doing for this challenge is I wake up in the morning and I have a glass of water with squeezed lemon with my morning pills then I make my smoothie and sit down to check fb email and all that, I may or may not have a low protein wheatstarch bun if I am still hungry. With butter and organic jam ( its lower in calories)  at 10 am I have my first formula. Then at 12 I have lunch. A low protein pizza pop ( wheatstarch) applesauce, or fruit and a few sticks of celery or carrots. Dinner I have potatoes or pasta and veggies with my last formula. 

So far it has been working out very well. I still am not loosing really any weight. According to my scale. I am going to yoga twice a week, gym twice a week, walking once a week, and aqua fit twice a week. Today I set up a home gym with a TV and DVD player for my yoga, Pilates and zumba DVDS. I also dragged in my recumbent bike. I went to walmart and bought some 8 lb dumbbells  a skipping rope, a buso ball and exersize ball , and some stretching cords.  I made up some poster board charts and graphs to help visualize my progress and realized that I had not taken my measurements yet for February  I was not really expecting them to have any change. I don’t feel different or look different , my clothes are not feeling different . but I was surprised!! i was down 9 inches! So i must be doing something right. Now if only the scale would go down too. 

That has helped re motivate me. 

well BC PKU DAY 2013 is this weekend! I am so excited for the event! nervous for the drive down over the couquihalla though during the winter.  Normally the events are in June  This is going to be a big event too! Big speakers, important news information. We are having a “pennies for PKU ” penny drive, and more but you will have to wait for the event! 

I have booked my clinic appt for Friday at 1 pm and this will be one of the first events where I am not the  only PKU adult , my friend Amanda is coming with us! It will be her first event.  Also one of my other adult friends from the interior is going to go.  We are leaving here at about 8 am to make it for my appt. The clinic does not normally do clinics on a Friday but are specially for people coming to the event.  The event is Saturday 9 am to 5 pm and it is not to late to register for those wanting to attend! 

Thursday before the event here in Kamloops I will be live on the Jim Harrison Radio show Radio station NL 610 am talking about the event, my pku life and international Rare Disease day on February 28th. You can listen online if you want but dont tell me till after. I am a little nervous ! Better to think its just him and I talking. Hopefully I don’t stutter! I get so excited when I am talking about PKU. It is always hard for me to keep it short and to the point as everything is important to me! 

Well , I guess I should wrap this up! Thanks for following! Id love to hear from you! please feel free to leave comments, ask me questions or leave suggestions for future posts! 

 

 

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Low pro food / cooking, Managing the diet

February 15th 2013

Posted on by Amanda Horner

Today I started my 30 day Green smoothie Challenge with Young and Raw! I am alittle nervous but excited at the same time. I am actually a very picky eater , I have a sensitive stomach  and I react to so many foods. I am doing this challenge to get more variety as well as for my health. I have been reading so many articles about the benifits and I would really like to be healthier over all.  The challenge is to have one green smoothie a day. Young and Raw sent out a grocery list a few days ago and its most everything i buy when i go grocery shopping anyways. Then every night they send you the recipe for the next morning. Some of them call for nuts , or seeds and some things I cant have but I just omit them.  Todays smoothie was : 

* 1 Rib of Celery
* 1 Pear
* ½ Frozen Banana
* ½ Cup of Cucumber
* 1 Handful of Parsley
* 1 Cup of Water or Coconut Water (ideally raw and unpasteurized!)
Harmless Harvest is one of our favorite raw, unpasteurized, and
environmentally friendly, conscious companies that produce the
most delicious Coconut Water. Tastes like it’s fresh from the
Coconut!

Fun Smoothie Facts:

1. Celery will help to lower blood pressure by helping to relax the blood vessels around the arteries.

2. Pear is high in vitamin C, which is important for your immune system.

3. Bananas can help to soothe an upset digestive tract.

4. Parsley is a blood cleanser, and can help rid the body of stored waste.

5. Coconut water is even more hydrating for your cells than regular water!

Here are some photos of my smoothie from today!Image

 

 

I am not to sure what I think of it quiet yet. I am not a big fan of the coconut water, It sort of upset my stomach but it was alot easier to actually get the smoothie down then I thought.  I have never had a smoothie with cucumbers and celery before. I had thought it would be more chunky. I guess I have a really good blender. Honestly it was not very thick at all.  I hope I can actually get through this challenge! WIll be interesting to see what the effects are.. if i loose any weight or feel any different. Its not a fast either.. I can eat whatever I want through the day as long as I have my smoothie with breakfast. 

However when you are eating healthy you want to continue.. specially when you are being active as well. Does not make sense to work so hard then eat unhealthy. So hopefully if anything it will keep me motivated! 

I will be sure to post about my progress! I am sending my smoothie recipes to my dietican to be analysed for the PHE amounts. I will share with anyone who is interested! 

 

 

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Levels, Managing the diet

February 14th 2013

Posted on by Amanda Horner

Happy Valentine’s Day everyone!!

Today I thought I would make a post about some Indescrepencies In the PKU world.  It seems that many countries still have alot of differences when it comes to diet, treatment, and rules.  Many places it was ok to come off diet at 7 years of age. It was only recently with in the last 10-20 years that the idea of “diet for life” started to become accepted around the world.  Scientists use to think that the brain stopped developing at this age and therefore the effects of PHE levels could not be negative on development. However they still did recommend women who where trying to become pregnant returned to diet for the benift to there unborn baby.  We now know that PKU is not curable, only treatable and you cannot grow out of it, there is no “safe” age.  Adults and youth as well as children suffer from high levels and damage to the brain. They can still suffer from all side effects as well as depression and anxiety  tremors, head aches, low attention span, and unablitity to stay focused.  Many Adults that I have spoken to who suffer from high levels or who where taken of diet are not reliant on the government as they are unable to manage there health, there symptoms. They have a poor quality of life and un able to sustain jobs, and healthy relationships. Every part of their lives are effected.

Diet for life is not the only discrepancy as well.  Blood levels and when to take them are also different around the world.  In Canada our range is 2-6 as children and 2-10 as adults. 2-4 for maternal PKU.  Some people are told 2-6 at any age and some measure differently. There range is 120-600 for adults, and 120-.360 for children and pregnancy (To convert the systems you either divide or multiply by 60. ) Not only do the values differ but so does when to take a phe level. I was always told that you had to take a level fasting , when you wake up in the morning before eating or drinking. I was told this gives you the true level and that it is also what your level is at its highest. Once you eat or drink the levels are lowered, producing a false low. I was taught to send 3 days of records with my blood test , the 3 days prior to the blood test reflect the average PHE in the level the best. I had use to send a hole weeks worth but my clinic said only the last 3 prior to the level are considered and analysed.  I have spoken to people all over the world and almost every where is different  Some do their levels in the evening before bed, some do them between lunch and dinner.   As a young child my blood was drawn from my foot at the lab, as a child , and youth I had to go to the lab and have my blood drawn from my arm. I rememeber that when I was in school, my mom would have to fight with me to get up early and go to the lab. i would have to take my formula in a thermos and my froot loops in a zip log bag and my mom would have to bribe me to get me to go. I would miss the morning at school and would have to go late. Sometimes she would keep me home from school the hole day and we would make it a special day. I always got stickers or treats for going.  When I turned 13 the clinic switched it to home draws and I had to start learning to take it from my finger with a “pen” or lancet. The first time mom did it , I fainted. Now I still do it at home. I do my levels once a week. The recommended as an adult is once a month. I still get annual draws done at the hospital though.  i personally think If i had the time to still go to the lab I would. I think its much easier getting a blood draw then poking my fingers and trying to fill up the filter paper.  Atleast I get to eat right away!

I have not found many that are the same. it seems to vary between clinics . It really makes one wonder what is really accurate  what way is truly right and why are there differences at all? Should it not be the same every where?

The 3rd biggest difference I have found is again related to diet.  As you know, there are many ways to track phe, Exchanges , Mg of PHE and grams of protein, or the starch diet. however not every where has the same values for food. In the UK fruit and vegetables are free. They are not counted and are unlimited. Here in my province of Canada, everything is tracked, everything has something in it. Unless it is truly protein and PHE free. But we still track it for the calories.  Children and people newer to PKU are taught to measure with a scale as it is more accurate , but I was taught with measuring cups. Though I mostly eye ball my portions any ways  when I am unsure, I still use my measuring cups. I rely on Virginia Schuettes food list book , where some people don’t have aces to the book and use the internet, dietician, or smart phone apps.

Aces to new treatments or low protein products vary , so does clinic  support, policies and rules. I find my dieticians very helpful and supportive to my needs , but in some areas they are lacking as well.

The discrepancies don’t end there either. There are many more but these are a few that I find come up alot. I personally dont understand why it varies country to country or even clinic to clinic. With something so serious and so many side effects you would really think that these aspects would be universal. So even though we have come along way in the treatment and understand of PKU, its obvious we still have along way to come.

What are some Indescrepencies  that you have experainced that I have not listed? I would love to hear from you!

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Levels

February 12 th 2013

Posted on by Amanda Horner

I just got my level from February 1st it was 6.0 . I also sent one in on the weekend. I am still doing them weekly. Every Saturday morning. First thing , after a warm shower, while fasting. I still would like to see then lower. I would like to have my levels down around 4. I have not been eating to much fruit or vegetables lately. I did have a lot of low protein but time to do some more baking today or tomorrow.  I have been slacking on my food dairy as well . But I am making changes and I remeber what I have eaten the last few days so today I am filling it in and catching up. I am still aiming for under 500 mg phe. I am thinking this week I will start aiming for 400 mg phe and see if it drops my levels. 

My water intake is still going well and I am still going to yoga and and all my activities. Weigh ins are still showing no change though. 

So I will just keep doing what I am doing and tweek it around here and there.  Every day is a fresh start and just taking it one day at a time! 

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Low pro food / cooking

February 12th 2013

Posted on by Amanda Horner

International Pancake Day! 

Image

 

Today is international Pancake day all around the world , So I celebrated with some low protein mix pancakes. They are so easy. 1 cup mixquick, 2/3 cup water. Topped with Banana , butter and maple syrup.  Totally off my calorie count for the day though. Sometimes you just have to induldge. I still remember the first time  I had mix quick pancakes. I had gotten a sample from the clinic, just one cup, while I was staying in vancouver at my friend Claudias house. Her Dad made them for me. We where so amazed how “real” and “normal” they looked and they tasted just fabulous! Before Mix Quick I only ever had Kingsmill all purpose pancakes. They where thick, white and never turned colour. They looked really odd and where so hard to cook. And you could not make waffles with them in a waffle iron. Mix Quick is one of my favorite products as its so easy to use. I make muffins with it, bananna bread, waffles , pancakes , scones and more. I love adding fruit to my pancakes. keeps it interesting. I have added canned peaches with the liquid. Apples and Cinnamon,  all types of berries, Kiwi, or even bananas. On Christmas my sister in law made me gingerbread pancakes! There is so much you can do with them. Its a great warm winter breakfast. We use to have pancake or waffle days once a week. Now its more once a month. 

 

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Weight loss

February 8th 2013 1:22 AM

Posted on by Amanda Horner

Well night shift tonight and I am really hungry!!! Tonight I brought a pizza pop, applesauce, peaches and low pro gluten free pretzels.  All I want to eat is the pizza pop but I am trying to hold off alteast for a few hours. I doubt I will make it.  Its so hard with random shifts. A few weeks ago I thought I had the night shifts down to a semi ok routine but then the shifts got slow again and I have had 2 shifts in over 3 weeks. ahh the life of a casual nurse!

So anyways I am reflecting on my progress with my weight loss and I am not happy!!! infact I am very frustrated and dissapointed. I am alittle obsessed too. I am weighing in monthly with the 2013 Biggest Loser PKU style facebook group I created but I am also weighing in weekly with my friends. If I go by my monthly weigh ins December 1st was 180.4 , January 1st was 181.6 , and February 1st was 180.2 . This is just not good enough. I am going to Yoga Tuesdays and thursdays , Gym mon, wed, friday , Aqua fit monday and wednesdays and I walk twice a week. Why am I not seeing any changes? and i know everyone says dont focus on the scale but my measurments have not changed yet. I dont no what I am doing wrong. I am drinking way more water than I have ever dranked. I am tracking phe and calories, I am eating more fruit and vegtables and my blood phe levels are great and stable. It always seems like its one or the other for me. either my blood levels are high and my weight is low , or my levels are low and in great range and my weight is high. This is my biggest problem with PKU! it makes weight loss so hard!!

Looking back into 2011 When I actually lost 30 lbs from January to June , I was doing all this and the only diffrence was my formula. So even though bettermilk flavour changed for me when they switched the formula I am going to give it another try. Cambrooke did say they where switching it back. So hopefully by now I will get good batches.

I also talked to my dietican today to see what else I can cut out of my calories or cut back on and the one thing that is popping up daily in my food records is margarine. I have margaine on my toast or low protein buns and pizza pops and I also have it on my dinner and I cook with it. So i am going to start tracking my magarine useage and see if I can cut it back by half. As well as keep working on my fitness routine. I am hoping with these changes I will see some progress on my next weigh in on March 1st.

Oh I also joined the Young and Raw Facebook 30 day green smoothie challenge. That is what I am going to be doing for lunch. I think its a great idea. I will get a more variety of fruits and veggies, try new recpies, gain more nutrients and natural vitamins and minerals. I will of course let you all know how it goes! The challange is free and I talked to them about modifying the recipes for myself to make them more low protein friendly. Like subistiuting milk , yogurt and taking out any seeds or nuts or anything like that. They said that was fine. So if you feel like joining me, please feel free! I would love to hear how it works out for you! The challange starts February 15th and Young and Raw will send you a grocery list via email before the challange starts! Please let me know via my own facebook fan page if you decide to join!

Well I guess that is all for tonight,

Hope everyone in my time zone is having a good sleep! and for the rest of you, have a good day/ evening!

xoox Amanda C

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Levels, Managing the diet, Weight loss

February 8th 2013 : 12:50 AM

Posted on by Amanda Horner

January Overview :  Starting Weight : 181.6

January 4th : 252 mg phe / 1530 calories

January 5th : 456.5 mg phe  / 2299 calories ( 7.5 mm/dl Blood test result)

January 6th : 745.5 mg phe  / 1619 calories

January 7th : 239.5mg phe / 2836 calories

January 8th : 575 mg phe / 1701 calories

January 9th : 243.5 mg phe / 1895 calories

January 10th : 271.5 mg phe / 1284 calories

January 11th : 392 mg phe / 2066 calories

January 12th : 320 mg phe / 2847 calories ( Blood test Result : 5.6 mm/dl )

January 13th : 328 mg phe / 1726 calories

January 14th : 424.5 mg phe / 1231 calories

January 15th :  693 mg phe / 1735 calories

January 16th : 328 mg phe / 1887 calories

January 17th : 378 mg phe / 1669 calories

January 18th : 265 mg phe / 1612 calories

January 19th : 456.5 mg phe / 1766 calories

January 20th : 276.5 mg phe / 2010 calories ( blood test done – 6.6 mg/ dl results )

January 21st : 142mg phe /  1966.5 calories

January 22nd : 235 mg phe / 2062 calories

January 23rd : 462.5 mg phe / 1647 calories

January 24th : 322. 5 mg phe / 1599 Calories

January 25th : 292 mg phe / 2074 calories

January 26th : 245 mg phe / 2126 calories

January 27th : 437.5 mg phe / 1451 calories ( blood test done – 6.5 mg/dl results)

January 28th : forgot to fill in  :(

January 29th : 483 mg phe / 1694.5 calories

January 30th : 363.5 mg phe / 1475 calories

January 31st : Lunch out at white spot. They made me  a vegtable rice stir fry / sweet chill sauce

with out lunch my intake was 270 mg phe / 1244 calories.

Weight on February 1st : 180.2   Loss for January : 1.4 lbs

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Low pro food / cooking

Pizza pops and Wheatstarch buns

Posted on by Amanda Horner

This is the recipe I use for my wheatstarch buns and pizza pops. It is from cambrooke foods.

ategory: Dough, Pizza

Ingredients

  • 3 1/2 loosely filled cups (350g) CBF Wheat Starch
  • 1/3 cup (60g) Metamucil®
  • 1 1/2 tsp (6g) yeast
  • 1/2 tsp (5g) salt
  • 3 tsp (15g) baking powder
  • 2 Tbs (30g) sugar
  • 1 1/4 cups (275g) warm water
  • 2 Tbs (16g) vegetable oil
  • 1/2 cup (115g) non-dairy liquid creamer, warmed

Directions

  • Heat oven to 115-120 degrees F.
  • Mix warm liquid ingredients together in a bowl. (They can be combined and placed in a microwave for about 1 minute to lightly heat). Mix dry ingredients in a separate bowl and incorporate into liquid ingredients and mix vigorously.
  • Dough will stiffen quickly. With greased hands, knead the dough for just a few minutes.
  • Return to a lightly oiled bowl. Cover and let dough sit in warm oven (115-120 degrees F) for about 10-20 minutes or until dough almost doubles in size.
  • Remove from oven and press into a 16-18-inch pizza pan and bake for approximately seven minutes at 400 degrees F.
  • Add your favorite sauce and toppings and bake pizza for approximately 10 more minutes.
  • Makes one pizza crust.
  • SUGGESTIONS: Dianne Sullivan English Muffin prep tips: Fry 60g discs of dough in margarine in covered pan on medium low heat for about 3.5 minutes on each side.

Serving size:  106 g   ( 1 slice )
Servings per recipe:  8

Per Recipe Per Serving
PHE: 136 mg 17 mg
LEU: 200 mg 25 mg
Pro: 4.3 g 0.54 g
P.E.: 0 g 0 g
Calories: 1920 240
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