Category: Managing the diet

Managing the diet

My PKU Diet (App review )

Posted on by Amanda Horner

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So Today I downloaded a new app to help me get back on track with my diet and monitoring my intake. I have fallen off track since early april.  I made the decision last week to start again fresh on June 1st. I bought a new notebook to , but realized that I wanted to try something different. I really wish Dietwell was on android already. I am trying to be patient since I am such a big fan of Cambrooke and I know how busy they are. Such a big company and popular in the community.

So I googled PKU in the Google play store and found My PKU Diet . I have spent the day trying to work through it and figure it out. Also discovered I am way over range. I am going to start to aim for 400 mg phe.  I have had to input alot of my regular foods in manually and there is no where I can find on adding your own recipes to the food list. The food list is limited and out dated. But the scanner is a useful tool  . You can scan the items in your pantry or kitchen and it searches for information, If none is found it gives you the option to enter it in manually. Most everything I have I had to put in manually and saved them in the favorites section. I can also track my phe levels and weight. I still however wish there was an app for PKU that not only tracked phe and diet but also activity, weight and water intake. As its plainly obvious that weight and activity are issues for Adults on diet.  I have written cambrooke in the past to mention the above.  I am hopefull and confident that they will be success in developing an app to those standards , or updating dietwell to include thus.

Its frustrating having to go between 2 apps such as a pku app and something like my fitness pal.

So above are screenshots from my tablet, where I have installed the app. I have it on my samsung galaxy s3 as well but I do not think it syncs between the 2 devices. I wish that it was able to sync to multiple devices would help when on the go and do not have my tablet. Also a computer version that syncs with the devices would be great as well.

 

All in all I give this app 3 out of 5.  Its successful and gets the job done however there is room for improvement. I will see how easy it is for me to adjust to using an app again. Or how convenient it is . Will also be an adjustment for me  going back to using my scale over measuring cups or eye balling again.  Most of this app using weight in grams and ounces. I do however like not having to do the math any more. I select the food enter in weight used and it calculates for me! That is one of the biggest reasons why I am trying to use an app again, to save time!

I would be curious to hear from anyone who has experience with this app and what your thoughts are. Please feel free to message me or leave a comment.

 

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Managing the diet

My PKU Diet

Posted on by Amanda Horner

Has anyone used this app on the google play app store?  I am looking to speak with anyone who has experiance using it to give me a run through. I have been playing around with it today , learning my way around. I also want to hear if you like it? Seems to be the only option untill dietwell comes to android.

My PKU Diet for Android, it helps to manage phenylketonuria diet by tracking phenylalanine, calories, protein, carbohydrates, fats, cholesterol and 18 other essential vitamins and minerals!.

Download from Google Play: https://play.google.com/store/apps/details?id=com.mlashch.mydiet.pku

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Levels, Managing the diet, That's my PKU life

When my levels where high

Posted on by Amanda Horner

When I was a pre teen and teenager I struggled with my PKU so much.  I am not exactly sure why I had such difficulty now. I just did not care. I didnt listen despite my parents pain and despite the education my clinic tried to enstow on me.  I didnt want to hear it. I was hungry all the time. I started cheating at 13. My mom made menus for me every night and put them on the fridge about what I was suppose to eat that day. I hated having those decsions made for me , and I was picky about the foods she choose. I am still picky and I go through phases and cravings. Sometimes you just want what you want.  I also was always told never to trade my food with my school mates also; pretty much drilled into my head. But At that age I wanted to try things.  I had to learn the hard way, food that you cant have when introuduced into your body become like a drug addiction. You want them and crave them and would do anything to eat them.  My first ” addiction” was Mr. Noodles , chicken flavour. It started in grade 7. I traded my fruit roll ups for a hole year of Mr. Noodles and when my mom gave me notes to go to the coner store as a treat I bought Sour cream onion sun chips, and mr. noodles.  I would eat it all.  My levels spiked so much in those years. In to the 20s, i think as high as 25 at some point.  I lied about it too. I didnt want to get in trouble, grounded, have privileges taken away or be yelled at.  Specially by my clinic staff.  I always denied it and said it had to be from something else. I did not realize how sick I was making myself. I started having so many side effects but I swore up and down they where not side effects and something else was wrong. I also truly truly believed this! I eventually ended up in BC Childrens’s hospital for 6 weeks while I was in grade 9 . I had so many tests done and was on my own. My mom could not come with me as I had young brothers and sisters at home.   While in hospital I was educated and taught about managing my diet on my own, taught about PHE and high levels and how to track my intake and measure my food. I got a scale and a food list binder to learn about the different values of food. I was also started on many different pills to treat my symptoms that I was getting from the high levels.  By the time I left the hospital my levels where stable and I was on 19 pills. It lasted for a while but then I started eating badly again. My second “addiction” was to minute rice. Something that stuck with me untill this year. I swore up and down they would never break me of that addiction. I was so sick of potaotes and pasta. I just love rice and it really was an addction. I litterly had to “quit” and then I would get withdrawls. I have tired to quit 3 or 4 times now. This is the longest I have lasted.

Though out the years I have also gotten “addicted ” to oreos, cookies, yam and avacdado sushi. I am still addcited to sushi and for the past 6 months i have been going out for sushi almost once a week. Well untill april. I went once in april , and twice now for may.

I only eat rice now as a treat if im out for dinner. But I cannot have it in the house. I had to get rid of it all. Cole hididng it on me did not work.

I was also admitted again for high levels at 17 years old. for 2 weeks. To be withdrawn and to drop my levels down. Each admission that I underwent they would drop my levels in the first 3 days , but not allowing me any food and just formula on the 1st day, on the 2nd and 3rd day I would only have my formula for breakfast, and then for lunch and dinner I would have formula and applesauce. I was so sick and hungry. I could not cheat cause they controlled my food and there was not food on the floor or aces to fridge. I could not just help myself. I had daily blood tests from my arm and tests. After my levels where at the lowest they would slowly start introducing food again untill my levels raised up to where they wanted them at.

 

Luckily those are the only admissions that I remember.  I can still remember how sick i was. The migranes, the anger, the low attention span, fatigue. Heightened emotions, vision problems, hair loss. Bleached out hair. Gastro intestianl issues like IBS and gastro reflux.  Then the anorexia, not because I wanted to be skinny but I did not want to eat anything. I would have such horrible stomach pain after eating that I stopped eating . In highschool I dropped down to 109 lbs at my lowest and had bleached out blonde hair down to my waist. I started to get alot of attention and it went to my head. I was also taking laxatives every day to help with the IBS but the hospital never told me when to go off them and i stayed on them for over a year untill my dr. caught the “oversight” so i was always malnutrioned and de hydrated.  I was bullied so much , pretty much every form of abuse I suffered at the hands of my peers atleast once and on an on going basis. I was so misrible and unhappy. The lowest self esteem and I hated myself.  There is no worse feeling then looking in the mirror and hating your own self. I do not no how I got so lost or how I let my self get to far away from myself. i am ashamed of my past and who I was.

I try so hard now to stay healthy but we all have our “ups” and our “downs” its a constant cycle. For me its very related to either my mood or my finaces. IF i am not working, then I dont have money for food, if i dont have food then eat it wrong foods or to much food because I cant satisfy my hunger and then I suffer and cant work. Making it into a cycle where I have to hit bottom to stop and build myself back up.

I have learnt alot about myslef and what happens to me when my levels are high. i learned to read my body and I can tell instantly when I have had to much of something. I am very sensitive now.  However even still I tend to over induldge or eat to much or the wrong foods even when I know I should stop. Like with Sushi, and about a year ago with Brown sugar oatmeal. That was an addiction for me as well that I had to ban from our house. Poor cole, having to put up with my food bans because I cant trust myself to have them in the house.  I had cravings for weeks after i “quit” that one too.

So now I am very careful about introducing new foods. I do go though patterns though where I only want certin things. Right now my pattern is corn pops with almond milk and low protein pasta salads for dinner. I think I have had pasta salad every single night that I work a night shift for the last month or more. However my last pattern was mashed potatoes, that lasted about 6 months. every single night…. cole really is sick of potatoes now and would be very happy to not see them anymore. But i keep them around to eat on my dinners when I am off and have more time to cook something nice.

I think I have an addictive personality with these cravings and bad habbits. I wonder if anyone else with PKU experiences this? Would it have ever happened If I never cheated or introduced new foods into my diet. Atleast I can say and be proud of the fact that I have never eaten MEAT!!! or anything that would be way way to dangerous for me liek that. I do no better in some areas. My problem is eating to much of what I can have .  I have never tried dairy, or meat, sea food or anything like that and I NEVER EVER willl! I have never really been off diet, even though I didnt drink all my formula as a teen I have drank all my formula every day for the last 8 years. I feel it soo very much if I miss it even by a few hours.  I feel so sick when I miss a formula that it seriously scares me. I have damaged my body in some ways perminity. I am told I lost atleast 1 IQ point from my high levels, I have more white spots in the grey matter of my brain but I think I am doing pretty good , im not slow and I went to college and now I am a nurse.

I still have problems with my stomach and insensitivities  I still have IBS and I still struggle with getting in enough water so as not to be dehydrated. I dont weigh or measure my food. I eye ball it. I have my ups and downs but I think im pretty on track.  Well atleast I am making a real effort to be. I am setting goals and working to be compliant and lower my intake and my levels. I am working towards low enough levels for pre conception diet and for my future. One day at a time. Every morning I wake up a fresh start. I will get there! I am way more positive about that.

I really feel for all the adults out there like me that I have met who have come off diet or are not on diet I do not now how they can survive on a day to day basis. I am so sensitive now I can pick up the changes in my body and I really do not like it. I do not like how it feels. IF anyone can learn anything from me or if I could teach any PKU family, new diagnosis or child it would be to not cheat.  TO listen, to be educated, to embrace it as a life style, do not be ashamed or feel left out. And to the parents , it does happen, its not your fault. Its our own. You did your best trying to teach us , but sometimes we have to learn on our own. I share my story because I hope to help those who have lost there way or those beginning out so they don’t make the same mistakes I did and heart it from someone like them that its not worth it! Dont make food scary or  punishment or take away the fun from good food! And make sure there is a variety. Maybe if I learnt to cook and bake ealier on then I would have done better. I had no variety and felt left out and hungry. I also ate alot of my meals alone. In my room. I cooked all my meals myself to.. Dont do that! make meals social family time! I enjoy cooking now and sitting down to eat with cole. Even if we are not eating the same. We eat similar he just has meat added to his. I like having choices and a say in what I eat. I like to be able to go to my low protein cupboard and decide what ” i feel like” so involve your PKUer in meal planning. Dont plan to many days a head. For me its easier to plan meal by meal then its not as overwhelming. If i plan out the day then get there and its not what I want I either wont eat it or I change it. Another good tip is to make a list of meals with values ( phe and calories) for each meal and place them on a fridge and then when its time to start cooking, pick one of those meals or see what you feel like from the list! I find this very helpful and makes it easier for me to stay on track :)

So thats my message for tonight, thank you for reading!

I hope this post helps even just one person!

 

 

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Managing the diet

April 20st 2013 1:19am

Posted on by Amanda Horner

Well I am starting to get back on track with my food records this week and i have figured out where i was so off track and how come I have had a permint headache that never seems to go away. I am way way way off target. I dont think its been for that long though cause I was eating alot of low protein food and pasta last week. This week however I ran out my bagels so i have been eating fruit loops for breakfast than potatoes and corn for dinner.  So When I did my records last night I discovered that my past few days have been 722 mg phe, 703.5 mg phe, and even 752 mg phe but all my calories have been under 1600. Maybe cause my i haven’t been eating much but dinner and at dinner having both potatoes and corn at the same time. Plus fruit loops for breakfast. I am so very disappointed and shocked by how high those numbers are. I never even suspected. Thats double where I am suppose to be… so im making my effort over the weekend to bring them down.  with the smaller portions and pasta at dinner im very hungry tonight. I did do a little baking today. I made some Maddys yellow cake and some maddys banana muffins. super easy put them on after dinner. All you do is add water and oil. They taste just great too! like real food lol. Really great texture too. I might buy a couple of the yellow cake and make a double layer birthday cake for myself this year. Tastes just as great as a real cake. I love birthday cakes its always been a special treat to get a slice of “real” birthday cake. I love the ones you get from thrifty foods with the cream in the middle. My siblings all like ice cream cake. I never tried any of those or any cake with any chocolate.  I do also love angel food cake. . 

Im not normally to big on sweets at least I dont eat any regularly. I do however go through phases and im kinda more a cookie fean. I love my low protein cookies by kingsmill. The orange and cinnamon are my favorites. I also love oreos, butterscotch cambrooke cookies, gluten free lemon wafers, and of course short bread!  When I am getting cookies in the groceries store i always make sure its at most 1 gram per 2 cookies. 

My favorite cookies are the aproten biscotti. I can eat a hole box. They just melt in your mouth! 

I normally try to have a couple of boxes on hand of low protein cookies for snacking. Specially on night shifts, as well as for days where I have already most of my intake. They help as a filler. 

I am going to plan to do a blood test on Monday  I am working Sunday and Monday night so when I do a blood test on a night shift I do it after I wake up before dinner.  

I hate the waiting in between though . I will mail my blood test on Tuesday so it wont get test at new born screening laboratory till next Wednesday and then I will have to wait another week for the results. 

As an adult when your levels are consistent and in range you are only expected to do a blood phe level once a month and than an annual blood work in the hospital for amino acids and plasma’s . However I choose to do my blood tests at home once a week. It normally keeps me on track and accountable. I also like to be able to see my progress, patterns, and any changes.  The range at my clinic is between 2 and 10 for adults. Unless its pre conception MPKU and then range is between 2 and 4 . I personally feel my best when my levels are between 6 and 8.  My lowest where in February when I actually got them down to around 3. I don’t think have had them that low since 2006 and I never can keep them that low though. I really don’t eat a lot when they are that low.   Up until December I hadn’t even recorded any food records for about 10 years.  So needless to say I have come a long way and have begun adapting. Its starting to be come a life style change again. I still dont measure things though. I more just eye ball. I have a scale but ever since I was a kid we always used measuring cups. So I eye ball things in ” cup portions”  However I am beginning to wonder about about how accurate I am. So I am working towards that as one of my goals. 

So there we have it, a new plan to go forward. hope it goes well. We shall see come monday when I re evaluate. 

so untill next time , Happy reading! 

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Managing the diet, That's my PKU life

Dietician’s Day

Posted on by Amanda Horner

Today is National Dietitian day. So id like to dedicate this post to the fabulous ladies in my life who have supported me in my treatment for my PKU.

As a child the first Dietitan I remember was a lady name Carol. I remember she has red hair and a twin sister.  I dont really remember her from my clinic but after, When I was a kid she kept in touch with my mom and she sent me My first TY beanie babies.  The first one she sent me was a shark named “crunch” She sent him to me for a report I did on great whites in school that I did good on.  For many years after she sent me beanie babies and I had a hudge collection. I really wish I didnt give them away when I moved out.

I know Carol was a big support to my parents.

After Carol, was another Carol. I know her fairly well, don’t really remember her as my dietician for very long. I know my mom and her did not get along. Also I found her intimidating, maybe my judgement of her was based on my mom’s feelings though.  I kept in touch with her and saw here when I came to clinic to see my other dietitian.  When I was 13 , I began to take over the diet on my own and I was passed on to a new dietitian Alette.

Now Alette and I had a up and down relationship.  when I began to take over the diet I began to lie and cheat and sneak foods. I made myself very sick and ended up having to be admitted to the hospital for re education, with drawl from high levels and treatment for my high levels. These admissions are what bonded me to Alette. She spent alot of time with me and was very patient. She was always there for me no matter what. She spent hours with me meal planning, teaching me different methods to track, and about PKU and what my Levels did. I didnt realize it then , but she saved my life.  I love her very much and I have kept in touch with her all these years. Every year I see her at the CanPKU BC PKU days and I always look forward to it. She makes me smile. I am embarrassed for all that I put her through and what I put myself through. Yet she is still kind to me and welcomes me with a smile and a hug! I caused everyone alot of hell thats for sure. I am glad to know her now and have her see just how I have done!

When I transitioned to the Adult Clinic at 18, my first dietitian was Annie, and wow she was fantastic! I came to her still suffering from my high level symptoms and on many medications and struggling to keep my levels in range . I did not do regular blood test and didnt eat alot of low pro food.  With Annie I got my levels down to like 0 and 1.

Unfortunately i did not get to stay on with Annie and was switched over to Taryn. If I remember right Taryn may have been or was going on maternity leave. Or maybe she was coming back and thats why I went with her, I remember at first I was very pissed off. i hate changing people. i like to keep with the same people who know me and I dont have to get to know anyone else. SO I was annoyed and stubborn as hell.  I know in between Taryn and maternity leaves I also had Marty and Jen.

Currently I have Taryn and Jen. Jen works the first half of the week and Taryn the last. When I met Jen the first time I was stubborn as hell all over again and missed Taryn. Now I love both these ladies. Man the hell I have put them through to. They are so fanstaic and so supportive. No matter what. The countless emails, questions, the cycles of on and off track , the crashes and the burn outs, the numerous formula and product switches and  my  in ablitliy to cooperate and do my annual blood tests, they still are there for me. I have grown with them the longest.  I would really hate to loose either one.  I really rely on them for so much. I go to them for everything! even when i probably should go to my doctor.  They are even there for me if I just need to rant about my PKU. They send me recipes and samples and are patient with all the changes I make.  I feel so lucky to have Taryn and Jen,   I have an amazing team because of them.  Even when comes to cole, they are supportive of him and his questions, concerns and educating us both on maternal PKU.

I really don’t think I would be the same person I am with out the care I have received from my special ladies over the years. I could not imagine having a dietician that I did not get along with or that I felt did not support me. They are so vital to my quality  of life. I see them more than I see my Doctor or my PKU Doctor. Not to mention I consider them friends. Of course they are professionals first, but they are so important to my life its hard not to know them on a personal level.

My dietitians are always a phone call or email away and I know how special that is. I appreciate there hard work and dedication. They have taught me so much over the years and have been beside me through out my journey with PKU and I think they defiantly deserve to be honoured!

So thank you from the bottom of my heart. To all my past and previous dieticians  Thank you for helping me manage my PKU and live a some what normal life!

Thank you for all your hard work, dedication, support and for everything else you do for me and all the PKU adults at the clinic.

Amanda C

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Managing the diet, That's my PKU life

March 12th 2013 12:41 am

Posted on by Amanda Horner

Well its my Friday! night 5 of 5 . In some ways its been getting easier. I def dont have trouble staying awake on shifts like I was but I was struggling very badly with sleeping during the day to the point ive been feeling sick. I have been getting headaches and nausea.  by Saturday I was getting so frustrated I just wanted to cry. Cole came in to the room and hung some comforters over our windows and curtins , and rubbed my back till I drifted off. I have tried melatonin, homophatic pills, tea, baths, eye masks, ear plugs and everything else.

Sunday my best friends drove over on their way home to edmonton from disney land , and spent the night so buy the time I got home I was full of adrenaline and excitment , we watched movies and had a pancake breakfast, and I stayed awake till 1 pm . Then I fell alseep naturally and slept soundly till 8 pm! cole even cleaned the house, made food, watched TV , painted a wall and all this house work and I didnt hear a thing.

Today I got home and fell alseep naturally again and slept till 3 . I have been up since.

I woke up soooo hungry and craving a pasta salad. I have not been eating very much at work on my shifts cause its hard to eat at night for me but i am trying to make it a habbit. I dont eat all day because I am suppose to be sleeping. I eat a snack at 1 am, usually fruit and some special k crips. Then I eat a low protein bagel and my bettermilk at 5 am , as my breakfast. I dont eat again till I wake up for dinner with cole. So my daily intake has been very low and I have not had very much of an appetite.

So tonight I made a big pasta salad with low protien Aproten Rigatini, Mushrooms, onions, peppers, garlic, tomatmoes, 1 tbs corn , 1 tbsp peas and mircle whip to bind it.  This is one of my favorite meals but I have not been eating it lately cause its really high in calories. But since I had not eaten since 1 am and I had eaten very little it all worked out and it tasted sooooo good!!!

I am thinking my level that I sent in on sunday will be alot lower and this one this week to. My level from march 1st came back today and it was 8.3 Thats after being away for a week and many meals out and lots of sushi. So its better than I thought but I have been defiently been trying to get it down again. I am assuming it should be under 5 for the next one.

My intakes have been :

Night shift 1 : March 1st: 520.5 mg phe / 1567 calories

Night Shift 2 : March 2nd : 371.5 mg phe / 1701 calories

Night shift 3 : March 3rd : 417.5 mg phe / 1752.5 calories

Day off : March 4th : 335.mg phe / 1928 calories

Day off : March 5th : 561 mg phe / 1861 calories

Day off : March 6th : 480.5 mg phe / 1362 calories

Night 1 /5 March 7th : 326 mg phe / 2101 calories

Night 2/5 March 8th : Blood test done – Weigh in = 178.4  283.5 mg phe / 1292 calories

Night 3/5 March 9th : 382.5 mg phe / 1652 calories

Night 4/5 March 10th : 242 mg phe / 2130 calories

Night 5/5 March 11th : 277 mg phe / 1307 calories.

The cambrooke foods I ordered have been a big help to have things on hand and pre made. I have not had any time for baking but I am hoping to on my days off maybe not tomorrow but tuesday.  I loved the bagels. I feel in love with the bagels and cinnamon spread!!  I have not tired everything yet as one of my bags of  bagels and Artisan bread came opened in the freezer package. Also I ordered Butterscotch Cookies but they sent me Peanut Butter Chocolate chip ( YUCK!!) I have emailed our rep and he is working on getting it all fixed up so that will be nice!

Other than that not alot new. When we where in Vancouver I bought some of the new maddys muffin mixes, the banana and the cinnamon so I am planning on baking some muffins for my next rotation.

Oh I have also been going to the gym before I start at work . Cole goes to bed at 9 so I leave and head to the TCC and get there for 930 work out for an hour before I come in. Also my work has a small little gym that I can use on weekends since the TCC closes at 9. This week I went twice and walked once and went to yoga. I have re signed up for yoga for march and signed up for Curcit and yoga twice a week in April! Also my work starts their softball team in late april. :) I am looking forward to that. I also might be starting horse back ridding lessons this spring too! Trying to make time to make sure I keep active while I am working!

So thats all for now!

Take care everyone!

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Managing the diet

March 4th 2013

Posted on by Amanda Horner

Well I got the night line I had applied for at my work. I am excited by apprehensive to, My clinic and I didnt think it was a great idea because nights are really hard on my system and my body. Harder to stay on track and my sleeping and eating are all effected. I am hoping that I have a set schedule now that I will get use to it. I am also grateful its only a temporary line. I started March 1st and it goes to sometime in June. 

Its been really hard to sleep the past few shifts, I got some meletonin but It dosent really do much for me.  I have to change my meals around to and how I am breaking them up. So for march 1st was my highest day this month so far cause I had 2 smoothies and potatoes in the same day. 

Friday I pulled 520.5 mg phe / 1567 calories

Saturday March 2nd : 371.5 mg phe/ 1701 calories

Sunday March 3rd : 417.5 mg phe / 1752 calories 

and so far today I have had 26.5 mg phe / 139 calories. 

I have been trying not to eat till 3 am. Something low protein or fruits and veggies, then bettermilk at 5 am and then nothing till after I get home and sleep, so dinner with cole when I wake up.  Today however though I didnt make it to 3 am. Its my friday today which means its my last shift and then I have 2 off. So I am super hungry and ended up eating my low pro sandwich at 1 am. 

I have a pizza pop for later too.

Im trying hard right now working towards my goal of 400 mg phe and between 1500-1800 calories so im really watching what I eat. on my shift  yesterday I made a cambrooke order for the first time since 2011. I wont have alot of time to do my baking and i wanted to try a few new things. I got 2 bags of bagels, artisan bread rolls, cookies and low pro rice. It came to 173 dollars!! cole is going to freak!!! But I tried the Artisan bread as a sandwich at BC PKU Day and it was the first time I have had a low protein sandwich  Normally I find low protien bread to crumbly and dry to eat with out toasting so even thought its tough and I am not sure how i like it yet i am super excited to have a low pro sandwich on my shifts. I just put mircle whip, lettuce, onions and cucumber on it! 

I also am excited to try bagels! 

I wish the Canadian store had more products though I was looking through the american store and they have all the pre made meadly meals and way more variety. I order all my products though SPDC in bc childrens hospital because I mostly eat the APROTEN pasta like rigatini and ditalini , and I have not been able to find it online but cambrooke has it on the American store. In the Canadaian they only have the solo which I do not like. 

well hopefully one day! Untill then I continue to make most of my own foods and order from SPCA. 

 

oh oops! I also orderd a perogi from cambrooke. I usually make my own and i love them but they take along time!! They are so expensive and very small portion so i dont normally buy them but i wanted to try them again. honestly if i had lots of money i would by way more foods though cambrooke. i have never tried the hot dogs and ive only had the camburgers( low protein hambrungers)  once! They are pre made low protein meats!! ( made with mushrooms) they have a big pre made section that id love try one of everything! the pizzas, the pockets, buns, scones, Tweez which are like chicken nuggets and more! I am a picky eater though so am unsure what I would like, I dont want to waste anything so I  havent spent the money. I bet it sure makes life easier though! I have also noticed I like alot more things now then I ever did. 

So I look forward to getting my order! I hope it dosent take to long :) 

Will let you know how I like everything of course :) 

Well thats all for now, have a good night ( day) everyone! 

 

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Levels, Managing the diet

March 1st 2013

Posted on by Amanda Horner

February Summery :

February 1st :  WEIGHT / 180.2 lbs  PHE Blood Level : 6.0

596. mg/phe 1893 calories

February 2nd : Date night dinner out. Could not count dinner. Before dinner 219 mg/phe and 954 calories

Feb 3rd : 502 mg phe/ 2319 calories

Feb 4th : 527 mg phe / 1614.5 calories

Feb 5th: 252 mg phe / 1750 calories

Feb 6th : 226 mg phe / 1795 calories

Feb 7th -WEIGHT :  180.0 lbs /  339.5 mg phe / 1857 Calories

Feb 8th : 173 mg phe / 1698 calories

Feb 9th :  BLOOD LEVEL : 4.6 / 337 mg phe / 1504 calories

Feb 10th : 225. 5 mg phe / 1555 calories

Feb 11th : 398.5 mg phe / 1261 Calories

Feb 12th : 129 mg phe / 2028 calories

Feb 13th : 743 mg phe / 2135 calories

Feb 14th : WEIGHT : 179.8 / 554.5 mg phe / 1837 Calories

Feb 15th : 406.1 mg phe / 2315 calories

Feb 16th : PHE LEVEL : 7. 3 / 546. 5 mg phe / 2116.5 calories

Feb 17th : 366 mg phe / 1742 Calories

Feb 18th : 358 mg phe  / 1569 calories

Feb 19th : 342 mg phe / 1831 calories

Feb 20th : 367 mg phe / 1831 calories

Feb 21st : 464.5 mg phe / 1604 Calories

Feb 22nd – Feb 28th Values have not been filled in yet as we where away in Victoria and I didnt have time to fill them in.I plan to do that tonight on night shift. I did however continue to write everything down.

We did eat out alot while away and I had sushi On the 22nd, 23rd, and 26th. We ate out twice as well in Victoria and twice in Vancouver. I have done a level today but I am expecting it to be higher.

I also Changed to bettermilk on Feb 18th and I am so happy to be swtiched back. Luckily the bettermilk tastes great again! I am flavouring it with MIO and I have 5 diffrent flavors and they have no PHE, no protein, no calories so I am not adding anything extra.

Another change this month is I was down 9 inches, since January 1st and I started that green smoothie challenge with Young and Raw.

I only did 3 blood tests this month, I missed last Saturday while we where in Vancouver for BC PKU DAY but I did do one today!

I baked twice this month and have increased my fruit and veggies thanks to the smoothie challenge.  This month however I need to work on my water intake again and be working out harder. I am down another 2 inches for the month of february.  My goals this month are to bring my levels down to between 4 and 5 . I would like to work out harder more cardio and continue with the smoothie challenge.

So all in all it was not a bad month. Traveling is always hard and I am working to get back on track as of today. We got back from Victoria yesterday 3 pm. I thought I did badly while away but looking over my records I did not do to badly. even with eating out and sushi I was still around my target of 500 mg phe , and tried to make better choices. My calories where a bit to high . This month I am trying to keep my phe under 400 mg  daily and lower than 1800 calories. Heres hoping!!

So thats all that is new for me today. Hopefully more later! Today being March 1st I have already done my weigh in , updated the PKU Biggest Loser group, done a blood test and set up my new notebook for the next 3 months and had my green smoothie!

Todays weigh in was 179.4 thats only 2.2 down since Jan 1st but 11 inches. Here is wishing for good luck and more success in march!

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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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