Category: Managing the diet

Managing the diet, News, Social Media, That's my PKU life

Rare Disease Day / So what can you eat?

Posted on by Amanda Horner

WOW! It has been 18 months and 1 week since my last blog post and life sure has changed. Inspiration to write does not strike to often these days. Living and coping through a pandemic while raising my babies keeps me on my toes.

However inspiration has finally found me. How fitting is it that today is also Rare Disease day 2021.

In Honor of Rare Disease day I watched the new documentary about PKU called ” So what can you eat?” available on Amazon prime in America and Viemo.

This film is created by Jack Everitt A PKU adult. His Friend Liberty and other PKU community members such as our friends Lillian Isabella , Mark Edwards, Bianca Albanese, Lynn and David Paolella , Patricia Guthrie and more!

My first initial thought was how neat it was to see the faces to go with names I so regularly see on my pku Facebook profile friends list and in our world wide pku fb group. TO hear their voices to! I recognized many of my connections that I have followed on Facebook or Instagram for years. However never actually heard their voices. Like our dear Lynn! To me she has a beautiful accent!

I was able to gain access here in canada to the film through a screening by Ajinomoto Cambrooke, Inc . However I was only able to watch the first 20 mins of the film yesterday and only able to stay for 15 mins of the Q and A hosted by Lynn , David and the rest of the film crew after the screening. I signed up online for the zoom premier and given a access code for Viemo. I was sent a snack pack from Cambrooke of the Sea Salt Tortilla Chips and sample of the shake and cheese wit a recipe for ” Shake N cheese Queso to eat during the preimer. With formula samples to come later.

In the first 20 mins I was already blown away. I had gone into the movie with mixed expectations as It had been generating buzz in my facebook group for a few weeks now. Mixed from ” One big cambrooke commercial” Poor me attitude” etc etc. So I was disappointed for the negative reviews for a film I had been anticipating and excited for. I knew right away I was reserving my judgment as I am one to form my own opinions . I am very glad I did.

In the first 2o mins I danced between relief, justification, acknowledgement, inspiration and YES !! Thats me.

It was so amazing to finally have something geared towards the adults of my generations. Those in-between you can go off diet at age 7 to diet for life to hey look how far we have come and what’s available now, This should make your life easier. These Adults where speaking my language. Everything they said was so relatable on such a different level and brought to your attention. Creating awarness. The things no-one wants to talk about on facebook groups because we get bashed for scaring new families. Sometimes as an adult with PKU we feel with out a voice , with out a support system and even jealous of kids today for having it so much easier. It always seems new advancements and support systems are geared towards youth today. Everyone wants to help kids. To improve their quality of life and give them better access. PKU marketing is geared towards families, to newly diagnosed, or to youth and teens. Or maternal PKU. Because when your pregnant with PKU you are special and paid attention to and supported during your pregnancy. But soon as baby is born the shift goes back and you aren’t seen for as often, in touch as much, and coping and learning to parent and often the diet is the easiest thing to slack on . Its also rather difficult to drop right back to your regular phe tolerance and restrictions after spending the last few months being able to eat almost anything!

So here finally, was my story being shown on the screen. Being made to given attention to. In Other peoples words, lives, stories and experiences that mirror my own. Relatable. and Inspirational.

As I watched these adults share their stories that resonated so personally to me It was like watching and listening to my friends. I was knodding and shaking my head yes yes yes!

Then Lillian came on and she said something that struck me hard.

“When someone without PKU looks at a menu, they’re trying to decide what they want. When someone with PKU looks at a menu, they’re trying to decide what they can have.”

and I wanted to cry. I never even thought it about it that way or put it into words but this was exactly accurate. This is what I do too.

I knew I wanted to keep watching. I had to pause the film and come back to it today and I am so glad it was still available to me today for a few more hours.

I actually began to take notes as I watched because I knew I was going to need to reflect.

So many things that jack, mark, and Lillian said I agreed with. Jack mentions that he just gave up. He wouldn’t eat. He had to disassociate food with events and celebrations. It was just easier sometimes to just not eat. And I found myself thinking to my highschool years and that is exactly what I was doing to. I would not even eat food with my family. I often hid in my room with my food. or i JUST didn’t eat. I didn’t take school lunches anymore. IT wasn’t worth the questions and the comments. People use to make fun of the way my formula looked or smelt so I wouldn’t drink it. I was separated from my peers, my family and social gathers. Parents of my friends didn’t want to deal with having to have something extra for me. In elementary school I had to go to the nurses room or the teachers staff room so they could give me my formula from their fridge and they had to watch me drink it. In highschool they didn’t do that for me anymore so I didn’t take it. Not realizing to years later that not spreading out my formula through out the day equally was causing me damage. Jack also spoke of this.

Jack , Lillian and mark and other adults mentions not knowing the difference in yourself when you are off diet or on diet until you have been back on it for a while. Then you look back and your like oh. Not remembering the birth of your siblings, or something that happened. a milestone or a memory. Its like its blacked out. I often see photos from my childhood and dont remember it happening.

Lillian spoke of throwing her formula down the drain. I have done that soooo much as a youth. For years. That was my normal. Now as an adult I know how good drinking my formula makes me feel. If i miss it or an off even by a couple hours I feel sick. I never skip a formula now.

Managing PKU is a full time job. It requires so much “extra” so much thinking and planning. you just cant go out and do something or eat something or go somewhere. your always thinking what can i take with me that doesn’t need to be cooked or heated. What transports easy, where can i eat? how can i mix my formula? Sometimes you need to pack an extra bag if your going to be away from home longer then expected. I carry a case of formula in my car for those moments.

Meal planning and cooking is time consuming. It can take 45 mins to cook an PKU meal between calculating, prepping ingredients, cooking, plating , serving etc. Sometimes I just dont have the time. specially when I have a family to cook for. A daycare to run, babies needing attention or to be fed. I end up having to cook multiple meals, or feed my family first and eat later . If I dont have something low protein ready to grab or if i get to hungry Its the easiest thing to just not to do it and make a poor choice and grab something high cause its quick and convenient. knowing full well i will pay for it later. Sometimes I just dont have the patience to deal with all the extra. I want something Quick and filling and dont want to be hungry 30 mins later all over again.

I love that the crew touched on the realness and the rawness of the diet. That everyone mentioned is it healthy? Jack talks about always being in a calorie surplus because of the carbs and how hard it is to managing micronutrients on this diet. Having to watch what we eat but not having control or choosing what our numbers are, That we have a set stagnic tolerance we have to work with in. We cant change it. This spoke to me cause I am currently struggling to get active and healthy and loose weight. Liberty speaks about ” is this healthy for my body” She can think about the whole foods, the proteins, the raw materials, and if something is nutritional. Her over all health, Not just PKU. Something that is healthy for PKU is not necessarily healthy for someone with out pku. Our food is full of sugar. I love that they mentioned this.

Jack talks about how most people are healthy later in life then not so healthy as they age but wanting to go in reverse. I felt like he was talking to me. I cheated. I lied. I didn’t follow my diet, I ate things I should not have. I had really high levels. Now that I am a mom and older and wiser I want to do better, be better and be healthier now. I want to learn to be active and healthy and be a role model for my children. I have a more active role in my health now and my activity. I have a better understanding and I want to get into shape .

Liberty’s struggles with being hungry, noticing her mood fluctuations, dropping a few F bombs, shaking her head and grimacing her face while drinking formulas was real and true. She is able to recognize her emotional relationship with food. That she enjoys food and looks forward to it and to her its enjoyable and an experiance. With PKU you are eating cause you have to. Its edible. Its healthy for us. we have to eat. Not because we enjoy it.

I really apricate Liberty’s frustrations with doing all this prep work and cooking and the time it takes and how things like pancakes dont always turn out. Or after all is said and done and it just not as enjoyable as you hoped. Leading to disappointment in foods and meals. I have cried many tears over wasted time over dishes that havent turned out and I’m just so hungry. I throw it all away and grab a box of real rice.

I have banged cupboards, slammed doors, thrown pots, broken bowls in frustration. Dropped my fair share of swear words. But that is life. That’s real.

When Liberty talks about how the go to is pasta I laughed. I alternate between pasta and potatoes every night. 4 days a week is pasta. There is only so many ways to dress up pasta! There is only so many sauces we can have, or things we can add to make it filling. I do have to say though Pasta is my favorite low protein food. it is my go to and the most filling. I eat a lot of pasta and my waist hates me for it.

I loved that the adults where real , raw open and honest about their struggled with mental health, anxiety, fatigue, and how bad or high foods make you feel intoxicated.

The point of view from the food developers about the difficulties of providing low protein food and producing quality foods with healthy raw materials vs productablity was an interesting perspective that I hadn’t realized before. I liked hearing from them and their stories just as much as I did the PKU adults.

I am glad the film included families, parents , advocates, and normal people. It was diverse and all connected. Every perspective was important to share.

I am so glad to have seen this film. That is exists. I hope those watching it come away with a new appreciation, a new understanding and I hope the film reaches those not familiar with our way of life and teachers them something new.

I too hope that one day , I wont need to give my “PKU monologue ” and when I say I have PKU , they will get it. That it will be come as normal as saying I have diabetes and having an “oh,ok!” reaction. That they just get it.

I would love it if my non pku family and friends would watch this film for me. It is able to say all that I cant . It has give adults like me a voice. Inside and outside the community.

I hope that jack and his team go on to make it a series and feature different types of PKU like Maternal PKU. OR feature patients on different treatments and their experience’s. Giving us all a voice . Seeing it on the screen is so different then reading it and easier to make it more relatable and real. Real people real life. I hope that by bringing our stories to the media and to film connects it with every day people and spreads awarness that creates change.

For everyone who watches it, is another person who gets it and makes it a little less rare.

To Jack and his team.

From one PKU adult to many others, Thank you , Thank you so much.

0
Baby Number 2 / Maternal PKU journey 2, facebook, Madelyn, Managing the diet, MPKU Journey!, News, Social Media, That's my PKU life

PKU Awareness month means, Maternal PKU awarness too!

Posted on by Amanda Horner

IMG_8415

For #pkuawarenessmonth I will be mainly focusing on the miracle and wonders of maternal PKU Syndrome. All of my life I was told I would never be a mother. Hearing those words does not make the dream die, it does not take away the wish. It does not take away the hope. It does not prevent you for wishing and praying. As the years melted into each other the want never went away. In 2006 I was told for the first time, it was possible. That it was alot of hard work, that it was not for everyone. Well neither is motherhood, pregnancy or parenting. Hard work does not scare me. When the want is there, you can do anything you set your heart and mind to. I relate to those who struggle with infertility and the want to be a mother but for other reasons. I relate to the heartache and the deep deep passionate and consuming want. I relate to the heart work. Though its not doctors tests , injections and treatments for fertility. Its keeping my blood , my body, my brain and my uterus from being toxic.

For many PKU women , its months and months of planning. For many its returning to diet and treatment. Its many months of preparing the body. For preparing your brain. For many its withdrawing from toxicity of high phe levels and side effects. Its adjusting your body to major food changes, to major life style changes.  How do they do this?

With the recommended maternal pku pre conception diet and treatment.  It is highly recommend that any women with PKU who wants to have a healthy sucessful pregnancy and healthy baby follow a even more restricted treatment then normal , to get their phe levels even lower into pre conception range and keep them there for 3 to 6 months prior to conceiving and then the duration of the pregnancy.  I didn’t have this chance. I did things back wards, looking back its totally way harder.  both of my pregnancy’s where unexpected and unplanned. But very very much wanted. I prayed to god, I prayed to my deceased grandparents, I prayed to my grammie in heaven. I talked to her regularity. I dreamed. I wished. I wished on ” the first star I see tonight”  when the clock stuck 11:11 am or pm. When I had something lucky. I hoped. I held on.  I pleaded, and I bargained. Please god, let it be me one day. Let it be my turn. Bless us. Choose us. I promise I will give it my all.  Please let it happen one day. Please change his mind, please want him to want this to.

Both times I found out I was pregnant my levels where very high.  I was not off diet, I wasn’t compliant. I made allowances. I ate rice, and mashed potatoes, and corn and hash browns. Vegetable sushi, peas, beans, and sooo much rice.

I indulged. I did not weigh my portions. I did not keep track of my intake. I made allowances, and made excuses. Its to hard, Its not fiesable, its not sustainable, i’m to hungry. Its only me that suffers the side effects.  Im not hurting anyone but myself. I will do better tomorrow. I will eat less in the morning so I can eat more later.

Having to crash my levels down with in a week, having to re learn the diet, re learn how to cook low protein recipes, how to measure everything. How to track everything. All at once, plus come off anti depressants , anti anxieties and pain medications all at once. If I could change one thing, I would have done better at looking after myself, managing my PKU and actually planning for my babies I would have. But you know what they say about could have, should haves? and if you change the past you might not have the same present or future. I would not change my life for anything.

For I am a mother.

The fact that my daughter is here is truly a miracle in its self,  Life is a miracle, growing, creating and giving life is a miracle. Pregnancy is a miracle, but then add my PKU on top of it.

Now here I am about to bring another baby girl into the world. The weight of it is not lost on me. Through all the highs and the lows, through all the tears and sleepless nights, through all the struggles and all the ups and downs, through the smiles and the I love yous, The way my precious girl looks at me, I wouldn’t trade a thing for this life ive been blessed with.

Its not always easy and sometimes we get lost in the moment and we forget where we have come from and anxiously worry about tomorrow. But its worth it. Its worth every single moment. Id gladly pay for every second through this life and eternity.

There is no bond like that of a mother and her child. The bond I have my daughter is everything I ever dreamed of.  I cannot simply express in words the depth of my love for her . I see it reflected back in her eyes and its so powerful.  It is deep and beautiful and powerful.  The way she holds my hands, touches my face, the words that she says, the joy she experiences , the happiness she is and gives, that she lives and shares.  Its worth it all.  Now that she is such a fluent talker, her vocabulary really floors me. She talks better then some 4 and 5 year olds I know.   She really expresses herself, she speaks her feelings and her thoughts and the wow the stories she tells me. The way she tells me she loves me, and how i am the best swimmer ever! make me burst with pride.  How even though she is a very strong willed , independent, vibrant , busy 3 year old, she still needs and wants her mama. She still wants our cuddles and our talks, our hugs and our kisses.  I will always give her all of me.

It excites me to hear her talk of her baby sister, the stories she tells me about how she will be a big helper, how she will hold and change ” her baby” and all the things babies do and how her baby is in my belly. How every day she tells me what she wants to name her baby.  It makes each day that I struggle with this damn life, this damn diet, and these damn foods worth it.

Each day when I have to test my blood, and drive it to the lab, Each day when I sit down at my computer to record every gram of food I have eaten, when I plan my meals in advance,  when i make my food, prepare my formula. I am reminded why. My daughter is why. Both of them. For every high risk OB appointment, every midwife appointment, ever extra ultrasound, trip to Vancouver maternal fetal medicine, every email to dietitians and specialists, every panicked phone call, every kick and roll. Every thing I am doing its to give my children the very best start in life.  To ensure their health and ensure their futures. The literately weight of their life hangs souly on me , and what I eat.

They say being a parent is always putting someone else before you, and I do that by watching and weighing and counting every single thing I put in my mouth every single day and more.  I do it because I am so much more then me. I am their mother. I am a parent.  I am a partner and a wife.  This is just one part of my life and my daughters. This is how I give them the start in life they need and my care and my devotion and my love and my hard work grows with them and my role changes. From the day they are made, to the day they are born. To all the years to come, I give them all of me.

If anything having PKU has taught me so many life lessons. It has taught me hard work and sacrifice, it has taught me patience, it has taught me how to be strong. It has taught me how to give, and how to be a voice.  I use my voice in hopes of inspiring others. To help even one person know they are not alone. To provide support, to provide education, to spread awarness.

Many wonder why I do this year after year . Why I share my story so personally. Why I am so open, why I blog, Why I volunteer for CanPKU , Why I plan fundraisers and events, and why I post soooo much about PKU.

Well every year that goes by I am grateful for medical advancements , for changes in treatment and new research. For being alive and being healthy. For new born screening and I am proud to be able to use my voice to spread awareness . For each new friend I’ve made through out the year , for each new follower who does not know my story , for each new baby born , for each new diagnosis , for each new family effected , and for each new maternal pku mother…I share for you. If I can help just one new person by sharing , that is one more person who feels supported , one more person educated. And 1 by 1 more people will be aware and pku will be less unknown , less scary and less rare !

Remember, together we are all #PKUSTRONG

 

 

Happy PKU Awareness month!  thanks for following along. I look forward to connecting with many of you this month through social media. Through Facebook lives, though live questions and answer videos, through Instagram and Facebook.  Please feel free to share, write me a question you would like me to answer a topic you wish me to cover!

 

 

0
BC Residents and news, CanPKU, facebook, Managing the diet, Social Media, That's my PKU life

PKU Strong.

Posted on by Amanda Horner

Alone we are rare, together we are strong. PKU Strong.

What does it mean to be PKU Strong?

It means when faced with challenges we stand tall.

When a parent first receives a PKU diagnosis with their newborn, They stand up to the challenge and immerse themselves in our community. Learning everything they need to do to make our children strong, happy, healthy and normal.  They mourn a little bit but then they learn that normalcy and a healthy life is still attainable and it pushes them through all the fears and dark days.

A parent raising a PKU child and just trying their best to give them the best start in life.

The PKU parent who spends hours and hours daily to log food records, take blood tests on their own child, makes formula, orders foods, weighs and portions their child’s food.

The PKU Parent who carries a scale in their purse.

The PKU parent who worries every day when their child is away from them that they are being fed properly or making the right choices for themselves.

The PKU parent who cries at night when their child is sick or cant get the last of their formula in.

A PKU child learning not to share their foods with friends or take food from others. Learning that what they eat can effect their brain development.  Learning the yes foods and the No foods.

The first time they can explain what PKU is when asked. The First time they take their own blood dot or measure and weigh their food.

The brave face we put on every time we go to clinic and meet with our PKU teams.

The PKU teenager who is learning not to be peer pressured or not to be ashamed of their PKU. They learn to embrace it as a part of them and dont let it hold them back.

The PKU young adult when they transition away from their childhood clinic and team and start attending the adult clinic.

Every time a PKU’er tries a new PKU food or formula.

The PKU women who wants to become a mom’.

The PKU Women who experiences a Maternal PKU Pregnancy.

The PKU women who is raising children that do not have PKU.

The PKU adult who are learning how to feed their families a regular diet and cook or bake regular food.

The PKU’er who is learning to manage their diet through school, work , travel, and life.

Every time we take a level. Or go for our annual PKU blood draws.

When we learn to bake and cook and count the PHE in everything.

When we go out to eat and dont cheat or take the easy way out.

When we dont give in to temptations and cravings.

For those of us who have fallen off track  and had to learn hard lessons.

For those of us who have fallen off and picked ourselves up again.

For those of us who constantly struggle to be compliant and maintain good PHE levels.

For those of us who just really hate this life and this diet but we do it anyways.

For those of us who want to give up or give in but try again tomorrow,

For those of us who dont let it break us. Don’t let it define us. Don’t let is consume us.

For those of us who have suffered high level effects and lost jobs, failed classes, failed relationships, lost hope, suffered physically and mentally.

For those of us who battle mental illness .

For those of us who each fight our own PKU battles daily.

For those of us who are trying, learning, pushing, accepting, and doing.

For those of us who walk this journey, whose life has been changed because of PKU.

For those of us have learnt and grown and developed skills because of our path and our journey,

For those of us who are a better person from learning and living with a rare genetic disease ,

that is PKU Strong.

I am not PKU Proud, I am not proud of a disease I was born with , that if their was a cure,  I would take it.  I am not proud I struggle , I am not proud that I fall down and get back up constantly. I am not Proud that I cheat and I eat things I am not suppoes to.  I am not proud that I do not have the willpower to stick to my diet 100 % of the time. I am not proud that I make mistakes and I suffer from high levels a lot of the time.

I am Strong because I dont give up. I am strong because I dont let it hold me down. I am strong because I dont blame my life failures on having PKU. I am strong because I use my voice to advocate for others. I am strong because I want to help people avoid my struggles and challenges.  I stand tall from the lessons I learnt and my past experiences with my diet and life.  I am strong because I have seen both sides of the coin. I am strong because I have had bad high levels and suffered. I am strong because I have been very healthy with great levels. I am strong because I grew a life , safely and healthy .

I am strong because I keep going. I am strong because I dont give up. I am strong because I use my voice to improve the quality of life for others.

I am strong because I live this life. I have gone to school, I have changed careers, I have traveled, I have worked outside my home. I have a family, I have friends, I have a community. I have a team. I have a village. I am a mother. I am a wife. I am a friend. I am me.

I am PKU Strong.

 

 

 

 

0
Managing the diet, That's my PKU life

In 10 years

Posted on by Amanda Horner

One of my best friends and I were talking on the phone the other day. I was having  a really low day and feeling down. She asked me ” Mandy, when you think of yourself in 10 years what do you see? ”  ( I hate being called Mandy by anyone else LOL)

I really had to think about that question.  It really got me thinking a lot and reflecting on myself as a person now. You see I am very unhappy with myself. I have 0 self esteem, or confidence or self love. I know there is a lot of things I need to work on and changes I have to make.  I just havent had the will power or motivation to start on that journey or stick to it.  I always give up. My biggest thing is I really want to loose weight. I know I do but I havent done anything to even begin to try. I dont work out, I havent gone to the gym and I havent changed my eating. I just know I need and want to.

So when I look into the future, I dont see myself as I am now. I think about what I want.

In 10 years I will be 42 with a 12 year old daughter.  Sometimes I can see myself with 2 little girls and very involved in their schools and field trips etc. Cole and I at every game and activity and driving a van with their friends to and from concerns or plays or sports. That just seems sooo far away and crazy to think about. I  know I want to be a “soccer mom” and on the PTA and involved in my community. I want to be fit and healthy.  I want to be active and I see myself as happy and doing all these things.

So how do I get there? if I keep going the way I am going now, that vision of me I hold in my head will never happen and in 10 years I will be sitting here like What happened? I know I cant keep going the way that I am going. So when does the switch happen? What does the change start? And how do I get started?

Cole says I need to make a plan and stick to it? I have made so many plans, written them out step by step, set up meal plans,  talked about it and think about it , but then thats where it ends.  or if I do finally stick to something I fail 3 weeks to a month in because I’ve put so much pressure on myself and made an all or nothing plan. I always want fast results with little effort or work.

I could be going for walks or doing yoga, I could schedule some time into my day and make it happen. I plan to. I say tomorrow I will. Tomorrow comes and then I dont do it.

I am in this rut. I am jealous of everyone else who makes it look easy or is having results, but they deserve it because they are putting the work in.

i wish I could afford a personal trainer to come into my home and work with me once a week because that would keep me motivated and they can push me and challenge me and I wont have an excuse about not going out to a gym or not knowing what to do. So do I budget for that and put out that extra cost as an investment into myself to get me started even though we cant really afford it? I do think it will help. Maybe if it can get me started and developing new habits that in the new year I can continue on my own once I know what I am doing and have a momentum going?

I have joined gyms in the past and ended up paying for a membership im not using. I  keep telling myself id love to go for a swim or a work out at the Y but I dont have anyone to watch Madelyn and i dont go out at night because of my anxiety. Weekends wont work this month either because I am a vendor at craft fairs every weekend in November.

I should use my mornings off on Monday and go to the Y and leave her in their play care center but I havent taken her there before so she dosent know anyone and its not familiar. even though its part of the membership costs.

there is really no point to this post today, I just need to write and get some thoughts out to make sense of them and sort through them. Sometimes its just easier to admit it aloud and talk it through before it makes sense.

I must say, My family and I went out for a nature walk this weekend and it was so nice. I realized how much I really missed being outside in nature and walking with my family. enjoying the fresh air and moving my body. It was really refreshing and I really felt a difference in my mood the rest of the day.  We had a chance to chat with each other and not focus or worry about work stuff and day to day things. It was really nice to re connect and enjoy the weather. I really do want to get back to that. I miss riding my bike to. I had a lot of fun with madelyn this spring going for bike rides around the neighborhood just her and I . I hope I can squeeze a few more in before it freezes and the snow starts. I had hoped to this week but we are all down with the flu.

I was also doing beach body on demand 21 day fix at home. I made it almost the whole 3 weeks and I did loose 4 lbs. But then I fell and hit my head. I got a concussion and had to stop working out , after that it was just to hard to pick it up again.

What has worked for you? does anyone have any tips, advice or experiences they would care to share with me to help get me started? What would you do? What are your goals? id love to hear from you. 2018-11-04 09.54.35

My husband and our daughter on our family nature walk last weekend.

 

 

0
Managing the diet, That's my PKU life

Follow up Re Intermittent fasting.

Posted on by Amanda Horner

Today I received my blood phe test results from some tests i did to monitor the progress of my experiment with intermittent fasting.

I did a blood phe test after waking up just before I normally would eat at 7:58 am  It came back at 12.5 mg/dl

Then I did another blood phe test at 1243 pm at nearly 17 hours fasting and the result came back at 15.2

Then I ate my first meal and then waited and did a 4 hour fast between meals and took another blood phe test at 5 :16 pm. It came back 11.8 mg /dl

I weighed myself , and I had not lost any weight. I took my measurements and I had lost no inches. I had been keeping track of how i was feeling and waiting for it to get easier and it just never did.

I had a blood profile done by my doctor and my muscle enzymes came back elevated indicative of muscle breaking down.

after looking through all my own data and looking into my myself i have decided that this is not for me.   I do not like how it made me feel and i was so god damn hungry and emotional. I hated waiting so long to eat and struggled so hard to get through the morning.

I am honestly glad to be done.  I am shifting my focus back to eating healthier,  more low protein, more fruits and veggies and drink more water and try to do yoga more regularly.  Id like to get my levels under 10 again.  I am not drinking nearly enough water. I maybe drink 1 L a day and i should be drinking 4 or more.

I have a few plant based eating books and facebook groups im looking through to try to get some more meal ideas and give myself some variety.

one of my fellow pku adult bloggers over at PKU Positive has written a meal plan PDF that she is selling online and I hope to get it on my next pay day. I really like her outlook on diet management and being sucessful with out so much low protein and unhealthy foods. I like the sound of plant based and whole fresh food eating but i’ve never been able to do it in a way to stay full , and well i really like my low protein foods LOL

 

I just know I need to make myself a priority and get healthy again . I need to loose weight an be active and heath for myself and my daughter.

0
Managing the diet, That's my PKU life

Mental Illness

Posted on by Amanda Horner

The Webster dictionary defines Mental Illness as ;

any of a broad range of medical conditions (such as major depression, schizophrenia, obsessive compulsive disorder, or panic disorder) that are marked primarily by sufficient disorganization of personality, mind, or emotions to impair normal psychological functioning and cause marked distress or disability and that are typically associated with a disruption in normal thinking, feeling, mood, behavior, interpersonal interactions, or daily functioning.

But those of us who suffer , know its so much more. I almost feel like the described above make it seem as its your fault for not thinking correctly or following the norm.

I have battled with depression and anxiety for the past 10 years and it took me 8 years just to accept that Mental Illness is just not all ” in my head” That it is a chemical reaction too.

A chemical imbalance in the brain is said to occur when there’s either too much or too little of certain chemicals, called neurotransmitters, in the brain. … It’s often said that mental disorders, such as depression and anxiety, are caused by a chemical imbalance in the brain. – ( Source https://www.healthline.com/health/chemical-imbalance-in-the-brain)

Now we have recently learned that Adults with PKU have a higher risk of issues with mental illness that PKU affects the brain. When neurotransmitters are not made in the right amounts, the brain cannot function properly. High blood Phe levels can cause disruptions in neurotransmitters like serotonin and dopamine, which are important for mood, learning, memory, and motivation.

( source PKU and The brain http://canpku.org/pku-the-brain )

That being said, Just because I have PKU , does not mean I automatically will have depression or anxiety.

I think for myself personally, that the trauma and my past experiences are what caused my mental illness but struggling with my PKU on top of it defiantly makes it harder to cope or to get better.

I seem to go up and down. I have really good times and really low times. I am not bipolar though. I was diagnosed with chronic major depression, anxiety and panic disorder many years ago now. I know I have written about it in the past somewhere on my blog but as they years have gone by the posts have been buried or forgotten.

I was medicated for depression since 2012 to 2015.  I had tried so many different medications on the past and been on and off so much nothing ever really stuck. But in 2012 my doctor and i finally found a good treatment regime.  In 2014 I started to really struggle again. I ended up going to group cognitive behavior therapy until May 2015. Then I had private one on one counselling weekly till 2016.  I got pregnant with Madelyn in June 2015 and went off all my meds. I continued to see my counselor weekly in the beginning of my pregnancy then monthly, and after Madelyn was born it was harder and harder to get into sessions so I stopped going and my appointments really dropped off until this year when i was discharged in August.

When madelyn was about 7 months old I had been off my meds for almost 2 years and had no issues with post partum. That was my big fear was having post partum depression and unable to bond with my baby or look after us both.  I was lucky. Or So i thought.  Everyone is well aware of post partum depression and the risks . We hear about it more and more and their is alot of support and help to prevent it. What we dont hear a lot about is post partum anxiety.  or that either post partum depression and anxiety can occur up to a year after your baby is born. I thought I had escaped and succeeded. Then my world was turned upside down by graphic and horrible panic attacks. Visual “day mars” of tragedies that could occur to me or madelyn.  The fear struck me from all sides. What if we got in a car wreck? needed the jaws of life ? that she was hurt or worse and I could get to her.  What if was killed? I would have very visual images flash before me of the whole scene unfolding before me and powerless to stop it. My body would go rigid with fear and the tears would stream down my face. I would shake and be terrified to go out or to drive with her. so i avoided it at all costs.  I remember i needed to take her in for a check up at the OBGYN and i was terrified of going alone, of driving with her in the back away from me. I stood in the door with my keys looking at my car shaking so hard and crying bagging Cole to drive us and stay home from work but he couldn’t.  Winter made it even worse, snow made it even worse. I barely went out at all that winter.  By the time spring came back around I knew I needed help. I made the decision to go back on my medication. I was really struggling.

Here we are today and madelyn is 2.5 years old.  I am still having ups and downs. I am still struggling.  This summer was especially tough. I fell off track with everything. With my self care, with my diet, with my phe levels, with my weight, with my excersize. With my meal planning, with my whole daily routine and schedule, My levels got out of control and everything just sort of falling apart. My mind has been racing. I have built up walls around me that have cut me off and held me back.

for the past 3 years, i have not driven at night or after dark.  I dont normally go out after 3 pm or if I do not outside my neighborhood.  I wont drive or go out after Cole is home. This has meant weekends too. I get invited out to a friends or a gathering in a weekend or evening and I wont go not because I dont want to, but because I cant make myself.  I want to. I tell myself for as long as i can in advance that i will, or that I will try. Then they day comes and I just cant do it.  I have missed out on events  , concerts and shows ive really wanted to see cause i cant make myself go out.  I have concert tickets to see Brett Kissle in just over a week. Its a night. I have to drive myself. Normally who ever I go with will drive me but this time im meeting a friend there. Its almost winter, its dark, its wet and raining. I cant see well enough as it is at night but then add the shine and arorus and reflections from the lights and the rain.  Heaven for bid what I will do if it snows. I wont take  bus or taxi. I hate them and they make it worse. If I have a panic attack or if i need to leave i need to leave right now not wait for a bus or taxi.

I have all these things I want to try. I wish i could go to the gym, join a yoga class, go to pottery classes and learn to make something creative with my hands. tgo get out of my head and enjoy myself .  put this energy to good use. But I cant push myself hard enough.   I know i shouldn’t say I cant so much. or that I wont . I know its negative talk and its limiting me and cutting me off. I am actually a social person and i have great friends. I am extroverted and I do enjoy doing things. But I have limited myself to the times of day that i can do that. I have built these walls around me and its made me a bit lonely. I have lost friends from it. It has made me unreliable and not countable. It has made me a flaky friend. I thank god my friends that I do have put up with me.

When I think about how bad things where before and how far I have come. I really have made great progress. I have over come a lot but there is still chains on these shoulders.

Moving away from the island and memories that haunted me totally lessened the burden. I hated living in my own home town for the chains weighed so heavily on my heart and body and it was a weight that was exhausting me to carry. I felt so much more free after we moved. Like my chest lightened and i could breathe. I was literally afraid to breathe back home. I was afraid of who was around any corner.

I was bullied , beaten, abused and nearly killed as a teenager. I carry the guilt and shame of my past and of who i was . Every time i go home even for a visit im scared i will run into someone who knew me then and judge me. I have worked so hard to get where i am in life. I automatically want to shout ” Thats not me “s  thats not who i am. Please dont let it define me ”  I am always looking over my shoulder over who might see me. I am so glad I dont live there anymore. It was not a way to live my life. when I drive past a familiar spot, or a familiar street, or somewhere i spent time, or where something happens its like the air is knocked out of me. I literately dont breathe.  I was so happy last year when my old high school was demolished and torn down. One more reminder I dont have to see.  Just walking past the outside I could hear the taunts, feel the heart break, feel the stares, I was flooded with reminders and memories. I can still see it. I can still hear it.  and god damn nearly 15 years later , I can still feel it.

I did not have an easy time at school or at home. growing up in a dysfunctional family that has been torn open at the seems and split apart right at the heart leaves scares on a soul.  I wasn’t happy long before my accident in 2008 . I didn’t realize how much it still effects me, how i still hang onto it and is still carry it.  No one else who was there rembers it or feels like i do.  Everyone who say me beaten or bullied , or ganged up on and jumped can move on and forget. My abusers have moved on and started families of their own and dont give it any thought. My heart still remembers , my soul still feels it. it still effects me. I have given them far to much power. I have let them haunt my dream for far to long. why Cant I move on to? I have such a great life now. I have worked so hard. I can appreciate my accomplishments . I went to college, I became a nurse, I became a mother, I changed my career and opend my own business. I have a wonderful life partner who after everything and 13 years still loves me despite my problems.

It has made me very self conscious, needy, and very low self esteem. I constantly need reminders and reassurance . I am always striving for someone elses approval. I do not love myself or my body.  I do not want this to be the example for madelyn. I want her to love herself, be strong and confident and stand up for herself. To not be a victim or meak and weak. I want her to be the best she can be. I want her to be healthy . I want her to feel loved and not feel fear. I want her to feel her parents support and that she is able to come to us for anything. In general i just want to be better. I  know the things i should do to make myself better but here it is again, I cant.

I am tired of everyone telling me to ” just do it” or get over it. Or that its all in my head. that the chronic pain that is weighing me down is caused form my mental illness, that my stress and my struggles are physically manifesting and reducing stress loosing weight, eating healthy and being active will solve all my problems.

i wish there was a magic wand to wave and make myself better.  I think these feelings and struggles are a large part of the reason i stepped back from my pku advocacy work , from my blog and from mentoring pku friends. I have felt like , if i cant help myself what right do i have to help them? what right do i have to be voice in this community? Or who really wants to hear from me?

but , writting helps me. Im slowly finding my passions again and doing things that bring me joy. Like reading. Oh man i love reading. Im trying to learn yoga and work towards using it more frequently in hopes of growing my own personal daily practice. I want to start walking again and hiking. Before it gets to cold or snows.   SO i guess its back to step 1 and baby steps. I will remind myself, one day at a time. One step at a time.  Every day is a fresh start to try again or to keep going.

Maybe i should write that on my mirror? Hmmm.. good idea !!!??

 

 

 

0
Managing the diet

Intermittent fasting

Posted on by Amanda Horner

Most people will read this title and automatically their brains will say ” Not possible with PKU” and well, they are probably right.  However, after much thought, research, reading and other ; I have decided to try it. My husband has been doing intermittent fasting since January of this year. so 10 months. He says it has changed his life. He has had me listen to endless podcasts and read various studies. I have always just shaken my head and had the attitude ” so what? I cant do that ” or ” yah right that is the complete opposite of everything i’ve ever been taught”

Though, I cannot ignore the benefits and the progress he has mad. I cant help be jealous.  So we both began to think how can I do this?

I had to really think Why do I really even want to attempt this and is it safe? I have talked to other PKU adults and my clinic and thought on the information i have learnt from my husband and the information he has provided me.  The consensus I have gotten is there is just not enough known yet on is it safe for PKU or can it be done? My clinic does not think so.

So that should have ended my curiosity right there and normally it would have.  Then there is that voice in my head who argues. I have been living with chronic pain these past 8 years. After a serious car accident then multiple little accidents over the years has made it so i never really fully recover. I carry more tension and inflammation then the normal person. I have been told from multiple medical professionals its not normal at all.  It weighs me down and effects every aspect of my life. I have good days and I have bad days but it really does hold me back.  The bad days I can barely walk. I can hardly weight bare on my legs or feet.  I cant sleep because my hips burn. My back is on fire, my legs are swollen and the skin is tight. My feet ache deep into the muscles. My neck is so tense the knots stick out the back.  I have tried everything.

I am grossly over weight. I cannot stick to a regular work out routine either due to pain or my severe anxiety. I have frequent panic attacks. I dont like to go out on my own after a certain time. I dont like to work out alone, I cant keep motivated. Or it just simply hurts to much.

eating right and not working out hasnt helped the scale either. My self confidence and self worth are gone.  This is not how I want my daughter to see me , or how i raise her.  I want to give her the world and enjoy it with her.

So I have watched my husband, just from doing a 16 hour fast- From dinner the night before till lunch the next day , He has lost nearly 40 lbs, trimmed his body fat percentage, he has more energy and is happier. He dosnet need to sleep as much , he has more stamina and he actually eats better.  He still consumes the same amount of protein, the same amount of calories he just does it in 2 meals. He has changed the times her eats. Giving his body a longer amount of time to break down and digest his food.

He has taught me that intermittent fasting can change your body on a cellular level and reduce inflammation and pain.  As well as break down body fat. 2 of my biggest issues.

Here is an article that has 10 evidence based health benefits :

https://www.healthline.com/nutrition/10-health-benefits-of-intermittent-fasting

I was especially interested in how it can help the risk of diabetes. Something I am always worried about with being so heavy and the amount of carbs and refined sugars in the PKU low protein diet.

Another good resource is this podcast below :

https://bengreenfieldfitness.com/podcast/fat-loss-podcasts/the-complete-guide-to-fasting-how-to-heal-your-body-through-intermittent-alternate-day-and-extended-fasting/

and this book:

 

So going back, so much of this is NOT what we should be doing with PKU. My own clinic even advised me not to. I normally do not ever go against their advice, however this time I am trying. I want to test my theory and monitor my levels and Gage my own benefits.  I am not in any way recommending anyone should do the same. I am only hear to talk about what I am doing and why.   If this is something you are considering please talk to your medical team and please talk to your pku clinic.  Do the research , read everything you can and get direction.  Be monitored.

I will still be getting the same amount of phe, the same amount or calories, and drinking my normal amount of formula. I am just changing the times that I eat. I am going to do weekly blood dots to .

At my clinic we are all taught right from diagnosis to fast and then do our blood dots. Like a 10 to 12 hour fast.  so over night. I have always done my blood dots after waking up and having a shower. We are told this as its when our phe levels are higher and more accurate, as soon as you eat your phe levels start to lower. So my biggest thing has been , what difference will extending the fast about 4 more hours have on my levels. Will it really be that much as i will still be eating my regular diet just at different times.

Another thing we are taught is if you go to long with not eating or not eating enough , that our bodies go catabolic . That we begin to break down our muscles and the protein in our body and that raises or levels. There are many arguments on the internet now a days for regular non pku people saying if this does or does not really occur when you fast .  Apparently now scientists are changing their minds on that. and maybe it dosent really work like that? or if it does when does it exactly start and how much does it really change?  so if their are thinking this way now for regular people when will they start to consider people with  pku? These are the questions i have going into this and making sure its safe for me.  I hope to test this and find my own answers and prove my theories while sharing some of the benefits i’ve seen my husband enjoy.

Today is day 3 for me. I am so freaking hungry. I keep hearing my husbands voice in my head telling me the hunger is just a hormone called “Grellen” that is usually triggered by schedule so soon feeling hungry at my old breakfast time will fade and i wont get hungry till lunch. So now  i drink a lot of water through out the morning. I keep busy with my daycare kids and cleaning my house and prepping meals for the day etc.  and I eat my first meal at lunch with my daughter and our daycare kids usually between 1130 am and 12 :oo pm noon . I have a snack at 3 pm with my daycare kids again and a formula. Then my family and I eat dinner between 6 and 7 pm . Then we start again the next day.

I’ve been pretty cranky the past few days. Sometimes by dinner i’m in a full on rage. My husband tells me thats the sugar in my diet. As I sit here typing this i have images of low protein pancakes or waffles dripping in maple syrup and filled with berries through my head and my tummy is grumbling.   Going into this on day 1 i really thought id get the shakes and dizzy like i do if i go to long between formulas and meals . I am use to eating every 4 hours. But I havent. Actually at all. Other then just feeling hungry , I havent really felt anything else. I egarly check the clock frequently.

My husband told me not to have my first meal of the day be so sugary and sweet as it would make the hole effort pointless. So their goes my whole fantasy of waffles.

The past couple days during the fast i have made home made soups, and done some baking then its ready just in time for lunch. i have had things like low protein breakfast quesadillas with the cambrooke eggz . Yesterday I had a low protein mock tuna salad sandwich ( made with jackfruit) and my home made soup. I roasted 2 small pumpkins , a butternut squash, purred in the blender then added coconut milk and cinnamon and cooked on the stove top.  today I am thinking either tacos or burrito and soup.

 

2018-10-10 11.32.24

2018-10-11 11.47.48

 

 

 

Dinner I havent changed very much , its still either Mashed potatoes and veggies, Rice and veggies,  or low protein pasta!

I did a blood test on October 1st and if i remember to mail it in i will post my results here as my starting point before fasting.  my current weight is 192.4 lbs ( not something i share happily , but in the nature of transparency and for my personal study purposes.)

I guess now my next step is to call my clinic and inform them i am doing this so they can help monitor me and make sure im being safe.

check back for my progress and if im sucessful.  again by sharing my story i am not promoting anyone should do the same , specially with out medical support.

 

Here are a few more resources if anyone is interested in doing their own reseach.

I would love to hear from you if you have done this and what your experiance was and what you did and if you have been sucessful. Specially if you have classical pku like me.

 

https://www.foundmyfitness.com/episodes/satchin-round-2

 

https://www.foundmyfitness.com/episodes/valter-longo

 

https://www.foundmyfitness.com/episodes/ruth-patterson

 

https://www.foundmyfitness.com/episodes/satchin-panda

 

https://www.foundmyfitness.com/episodes/ray-cronise

 

https://peterattiamd.com/tag/intermittent-fasting/

 

 

 

0
Managing the diet, That's my PKU life

Back to routine

Posted on by Amanda Horner

Well the summer is over, school is back in and even though M is not school age , I opened my in home licensed family daycare when school started. We currently have 5 kids registered and most of them are before and after school care students. Our days are filled with arts and crafts , out door play and getting back into routine.

We went down to Victoria for the Labour day long weekend. To visit my family and I really noticed how badly i was suffering from high levels and anxiety. I really let myself go over the summer. Eating a lot of rice, not eating any low protein foods, not counting or measuring .  I got so out of control I was forgetting so much.  I was forgetting to take my medications and even if i had drank all my formula. Most days i was not getting my formula in. I felt myself drowning. I knew I had been spiraling for a while but just didn’t have the motivation to stop myself. I couldn’t think clearly. I did not realize how badly it was impairing me. I couldn’t even problem solve or think clearly. I remember I wouldn’t be able to finish thoughts or think of foods to eat, meal ideas. I was lost.

I made it my goal as soon as we got back from our trip to buckle down and rein it in.  Now that we are half way though the month we are working out a routine, getting onto a schedule and i am making progress.

We wake up at 7 am. Kids start arriving at 730 am. I make Madelyn’s breakfast and clean up from the night before , or the kids and I all do cosmic kids yoga. at 815 we walk the kids across the street to school and we come back and I make and eat my breakfast. Then Madelyn and I have our time together.   I make her lunch at 1130 and she naps at noon till 2 15 pm. I eat while she naps. At 230 pm we pick the kids back up. we stay outside for 30 mins, come back for afternoon snacks. I have been starting to eat a snack to. I found that i was skipping lunch a lot and we dont eat dinner till 630/ 7 pm so im going all day or from noon till 6 or 7 before eating again. Also by having an afternoon snack it reminds me to get that extra formula in.

After snack we go down to the playroom for arts and crafts and free play.  The kids go home and we close at 5 pm.  I come up stairs and do paper work and sit down for a bit then start dinner.

Madelyn goes to bed between 8pm and 830 pm.

Having a schedule has really helped plan my day , meals and activities around.  I have been doing pretty good at eating only low protein foods for breakfast and lunch but i still struggle with dinner and end up having rice a few times a week but no longer every single day.  When I say i am eating rice, i mean like 2 cups dry of white minute rice. So very very high in PHE so please dont do it. If you never eaten it dont start and if you are please stop. It is my Achilles heel. My biggest weakness when it comes to food.  essentially i am addicted.

It has been about 2 weeks since i started to eat better and now im adding back more fruits and veggies . I am really feeling a difference .  A few weeks ago i was stuck on what to eat, what to make, different meals and found myself eating the same thing time after time. Now im like hey wait a minute! There are alot of options. I can list off a few new meal ideas or plans. I have been writing myself notes, and lists. My time management is improving.  Ive gotten out few times and am starting to plan ahead . I got myself an agenda and a note pad and set it all up with reminders and important dates etc. I have set myself up a financial budget so i’m making goals and working towards them.  I have more energy and am contemplating adding a yoga routine into my day.

Now if only I could get some sleep id feel like a new person!

The fog is lifting and i am finding myself encouraged. I have made some new low protein foods orders and updated my formula prescription. Over the summer I added the Orange and berry periflex Lq to my formula regime. but i struggled with it as i needed alot more and it was one of them i was forgetting. I was suppose to have 3 a day plus 2 bettermilk. Before I was having 2 bettermilk in the am and 2 in the afternoon.  So now I was having so much extra. I think i might change it back. I enjoy the taste of the bettermilk better. Ijust liked the convenience of the juice boxes and being able to through them in the diaper bag when we were on the go or at the park and traveling.  I have to pack so much with me when i am just drinking bettermik. I need the packages, water, mio for flavoring and a straw. Plus a shaker bottle! It really adds up and takes up alot of room. I wish i could like the ready made bettermilk in the juice boxes but i just do not. I like my method for mixing it so much better.  Now that my daycare is open and we are back to school routine im not going out as much so i might just switch back.

I plan on following up with my dietitians  next week when i do another blood dot. my last one was august 1st and it was 10 mg/dl  I expect that it was alot higher through out the rest of the month.  I really feel my best at 8 mg/dl and under.  I hope I can get their again.

I would love to hear from you on your favorite meal ideas. If you feel like sharing with me please pm me on fb or email me!

thanks for reading

Amanda

 

Photos from Left to right :

1: Today’s lunch. Cambrooke foods low protein homestyle bread, earth island vegan cheddar cheese grilled cheese sandwich, carrots and celery with ranch dressing.

2:  my family and I picked all our pears from our pair tree last weekend. It was our best year yet for pears. I finally canned what we had left yesterday and ended up with 12 pints of pears and one jar of spiced apple pear sauce

3: Today’s afternoon snack. Granny smith apple and a cambrooke foods pumpkin raisin cookie and my formula.

 

 

2
Managing the diet, That's my PKU life

August 2018

Posted on by Amanda Horner

It has been so long since my last post, I really cant remember now what it was about or when it was with out looking.  Time with a toddler really flies. Days blur into week and weeks into months etc etc and i’m left standing already trying to remember what happen last. mi

Already summer vacation is over in less then 2 weeks and I am asking where did it go? How is it almost September? Summer was dominated by setting up my new daycare business and getting ready for my grand opening September 4th when school goes back in.

We havent really done anything fun yet.

I took the summer off from child care to try to work on my fitness and get my levels down. However here it is with august coming to a close and my levels are still very high and I have not lost any weight.  No pun intended, but it is weighing on  me heavily.

I am really struggling this summer to eat properly. My levels are being so effected that I am having a hard time remembering even to take my medications properly.  The last blood spot I did on August 1st is still sitting on my counter to be mailed in. I think I am probably sitting in the high teens. I have been around 11 to 13 mm/dl for months.

I recently changed my formula this summer to try to make things easier but now that it has increased the amount of servings I need to have , I am constantly forgetting one serving.  I am now suppose to be drinking 4 Loflex LQ Berry and Orange and 2 bettermilk. I have been having the LQ at breakfast and lunch, then 2 bettemilk at dinner.  I am suppose to have one more LQ at an afternoon snack and that is the one I have been forgetting.

In June I was attempting to do the beachbody on demand home work out program 21 day fix. I was also riding my bike and going for walks. I made it 18  days then I fell and hit my head and had a concussion so I had to stop for 2 weeks and ever since its been hard to find the motivation again. I am really low on energy , motivation, self esteem and confidence these days. My anxiety has also been hampering things a fair bit to.

I have been depression free since 2015 but I now know I did have some post partum anxiety when madelyn was 7 months old and it took me almost 8 months to get help for that.

I am managing day by day. My motto is one day at a time. Every day is a fresh start to do better and do what you didnt do the day before.  I really should amend that and make it one meal at a time, or hour by hour. As I always go to bed with a plan to do better tomorrow. I wake up feeling like ” Ok here we go new day!” I have a good breakfast, but then the day gets away from me. Im tired by noon, I skip lunch or eat a high lunch. I miss my work out and then by dinner im to hungry to think or to sit down and figure out my PHE and meal plan. So I wing it and make a fast dinner of rice.

Really i know what I need to do, I should  : Wake up ,  drink some water, make mads and my  breakfast, drink my formula, clean the kitchen, then do a home work out or go for a walk or bike ride, then come home and do my meal plan for the day on how much phe and stick to it. I really need to stop napping during the day to or watching TV.

Oh the if, ands, buts, shoulda , coulda wouldas!

What do you do to manage the day to day of your PKU? Have you developed any tips or tricks that help you stay on track. If and when you fall off track what do you find helps bring you back?

I want to hear from you. Post a comment below or visit my new facebook page and leave a comment on there.

 

2
Low pro food / cooking, Managing the diet

Glytactin Restore Powder!

Posted on by Amanda Horner

2017-04-22 10.53.27

 

Rave review alert! I am a big fan of the cambrooke therapeutics glytactin restore powder and I am about to tell you why!

During my pregnancy in 2015 I had to drink extra bettermilk and was adding mte amino acid mix to my formula and tyrsoine. After giving birth to my daughter my body still wanted the extra formula. But my clinic said I didn’t need it and it could effect my kidneys if I drank to much due to the amount of calcium.

I was in the habit of drinking 2 bettermilk packages and 12 oz of water at each meal so 3 times a day.   My clinic kept telling me about the risks and that it can lead to kidney stones and other side effects so asked me to cut back to 5 packages , which means at one meal , most likely lunch id only have 1 package instead of 2 . This didn’t work for me since its such a small volume so i ended up cutting all the way back to 4 package ( 2 with breakfast and dinner) cutting out my formula at lunch all together.  this left me hungry and had a hard time between meals specially lunch and dinner.

At BC PKU Day On April 1st in Vancouver I talked to our cambrooke rep about trying the Restore powder mixed in water at lunch. Its a formula supplement with out the vitamins and minerals. its mostly the added protein. It has 5 protein equivalents per package.

They came out with this product after having trouble with the restore liquids having gelatin particles and clumping in the bottles.  I was skeptical to try it, as i found the restore had an after taste and was such a large volume since id have to drink multiple ones plus my regular 4 bettermilk. However I am so glad I did!

At first glance it reminded me of the kool aide packages for kids that have the crystals you add to water.

Cambrooke and Stephanie sent me a few samples to try at home. They arrived on Thursday and I got a chance to try them yesterday.

I tried the berry yesterday and it tasted like a light juice or flavored water. It was refreshing and so easy. I just added it to my water bottle and took it on the go with me in my car while maddie and I ran errands.

It did not separate and was not chalky or clumpy. No after taste either.

So I thought id share some photos today while I sample the orange!

 

First I found a shaker cup since I found yesterday stirring vigorously Didn’t make it dissolve well enough: 2017-04-22 10.51.16

2017-04-22 10.49.41

Then give it a good shake , it will get frothy on top but keep shaking. Then let it settle and clear.

 

2017-04-22 10.52.22

 

2017-04-22 10.53.36

Getting clearer :

2017-04-22 10.55.30

Look at that , no chunks or froth ! looks just like juice and thin as water.

2017-04-22 11.10.39

Time to drink:

 

2017-04-22 10.55.03

 

ah refreshing and ice cold ! I cant believe its formula!!!!

2017-04-22 10.54.59

I can totally see myself doing this once or twice a day with my water. I defiently cannot drink all my formula like this add it be way way to  much. I need around 45 grams of phe free protein a day. My bettermilk gives me 30 grams.  Each one of these restore powders is 5 but they do have ones that come as 10 i think.  So doing this twice a day is totally doable. I love how small the packages are. They fit in my purse, Madelyn’s diaper bag, my car and my back pack so I always have them with me. I think I even have one in madelyns stroller for when  I am on a walk !

I totally do not drink enough water on a daily basis and am always dehydrated and thirsty before bed time. So this will really help me up my water intake too!

All in all I am impressed and happy to find something that will fit into my routine with out to much adjusting or trouble.

if this interests you , I really recommend checking it out! Could be great for those on the go and active high energy days, for the sporty kids , to take to school, to work , or after the gym!

2