Category: Managing the diet

Managing the diet, That's my PKU life

Traveling with PKU

Posted on by Amanda Horner

Traveling with PKU is difficult for me. It is possible, it just takes a lot of prepping, planning and organization. No matter how prepared I think I am , something always throws me off. I think if I was asked what my biggest challenge about trying to be compliant with my diet, I would say traveling . Even though we have never gone very far or traveled by air. The farthest we have been is a road trip to Edmonton Alberta this summer. Even then it was hard for me.  When we lived in Victoria, just traveling to Clinton had its challenges. I always have so much luggage compared to Cole. Even now when we drive out for a weekend it has its challenges.

The most traveling we do is, back home to the island to visit family, to Vancouver for PKU events, and every now and then to visit friends, Edmonton, Castelgar/ Trail, Qusenl and even to Clinton on weekends.

We hope one day to travel father, specially on a nice vacation. Cuba, Mexico or Hawaii.

For now, when we travel for vacations, I always bring a lot with me! usually prepping a few days before and packing the day before so to not miss anything. I bring with me a case of formula, because you never know what may happen. if you decide to stay longer or if something happens. I always feel safer with extra formula. I bring baked foods, such as my pizza pops.  Buns, and a few loafs of bread.  I bring extra water bottles for formula, and lots and lots of straws , even at 27 years old I cannot drink my formula with out them. I also bring all my MIO’s to flavor my formula.  I bring snacks for the road trip such as dried fruit, cereal, and things that don’t need to be heated or cooked. Lots of water, low protein cookies, salad or sand-whiches in Tupperware . Also canned fruit, peaches pears and applesauce. We always take a cooler for those things and anything that needs to be kept cold. We bring a back pack of all the food not needed to store. I also bring my low protein Dayia cheese, So delicious coconut milk, lots of applesauce. I also bring lots of bags of my Aproten Pasta and Rice. Even bring Miracle whip so if all else fails I can make a pasta salad.

So even with all this prepping and planning why do I always fall off track when we go away? Well eating out, eating on the go, eating on the road, and family or friends meals. When you are not in control of what is being made or making it yourself its so much harder.  Or when you are staying with friends and family and you don’t feel comfortable in their kitchen or even cooking in their space.

Even though we bring food for the road, its never what we want to eat, in that moment. It keeps us going but if we have time to stop Cole and I like to get an actual sit down meal in at a restaurant. Then when we are visiting friends or family away from Clinton , like back on the island we have so many people to visit and running around to do, we end up grabbing something in between visits. For me my go to on the go fast food is sushi, my downfall. yam tempera roll and an avocado roll.

Last time we went to Victoria I was taking part in the 30 day young and raw green smoothie challenge so I had all my veggies and fruit with me including my blender and coconut water. Though I totally did not continue after a few days after arriving.

Longer stays are always harder. It usually means more things to pack to. Sometimes I feel like I’m bringing everything but the kitchen sink with me.

When we do finally get to travel abroad, I will have to have a letter for customs for my food and formula and a letter from my doctor at my pku clinic.  I will also have to call ahead to make arrangements with the hotel. I will need to arrange for a kitchenette. When we get a hotel anywhere I always make sure I have at least a fridge and access to a microwave. I usually will research the hotel to see if there is a restaurant and what they serve. Also if they can accommodate me.

When we travel abroad I will also need a letter for extra baggage for my food and formula. I will have a few water bottles and straws , a few packages of formula, and some pizza pops in my carry on. My biggest night mare is that they loose my luggage and my formula. So I plan to keep a week worth of packages in my carry on. I know some people will have their formula shipped ahead to their destination but I think that there is a lot more hassle along with that. I think when we travel I will reach out to my  PKU network and see if there is anyone with PKU in that area that I can connect with, mostly for a meet and great, but also in case of emergency its nice to know they are there. I am more than willing to opening myself to anyone with PKU traveling through kamloops if they need anything or want to meet.

I know many many people who travel with PKU and with little children. It is more than possible, please do not be discouraged.  Instead be encouraged, do not let PKU stop you from traveling and seeing the world. Every day with PKU is planning, prepping and preparing, traveling just takes a little more. I have always said, there is this hole world out there, most people only see it in books and on TV. I want to see it, I want to live it and be apart of it.

I will not let my PKU hold me back, the only thing holding me back from going right now is fiances. There is always something right?

 

 

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Managing the diet, That's my PKU life

How PKU Impacts my relationship.

Posted on by Amanda Horner

I have had writers block for a while and have been wondering about what to write about so I posted on my PKU facebook profile for suggestions. One of the requests I have gotten a few times now is about dating with PKU or how it effects my relationship with Cole. Cole and I have been together over 8 years now and have been living together for 7 years. I barely notice anymore how PKU impacts our life or our relationship. It is so natural and just a lifestyle. I really have to think back to dating in high school and when Cole and I first started dating.

In high school I had  a few boyfriends, I wasn’t really aloud to date, and If I did I hid it from my home life. I also didn’t really share it that much with my boyfriends or my friends. A lot people didn’t even no I had pku. They knew I had something but I never shared much details. Looking back, I wish I had of shared it with them, it really effected the person that I was . my moods, my drama queen reputation was fueled by my high levels.

None of my boyfriends were really serious. I think the longest non serious boyfriend was on and off 11 months. All at school so never met the families or went out on actual dates. Before Cole I had one serious boyfriend. I thought I was in love and later had my heart smashed to pieces. ( never fully getting over it)  But that door is closed along with that story. As for the PKU side of that relationship, he did know. I spent a lot of time at his house, I even lived there for a while when I ran away from home. I use to do that a lot. I had anger issues from my high levels, This boyfriend knew about my PKU since We dated for along time and spent a lot of time outside of school together and with me at his house so much and so often. I got to know his family and comfortable enough to eat with with them, go out to eat, or to drink my formula and cook in their kitchen. I even left some food and formula there.  I didn’t share how my PKU effected me  , to them it was more allergies and that I had to eat certain foods and I could not eat other foods. I also traveled a bit with him and his family. So when we ate out I just ordered my usual mashed potatoes and grilled vegetables. I did not and have never eaten meat. I just said I was allergic to protein. I did not go into detail like I do now. That boyfriend and I did talk a little more about it because we talked of the future and marriage and babies. So I had to explain MPKU and how important it was to plan ahead and “be careful” . This boy friend was my longest relationship before Cole.

After that relationship crashed and burned I did not have another serious relationship until Cole and carried some deep scares. Was less open and withdrew a lot. I acted out though and was very troubled. When I met Cole I was not looking for a relationship and was very tentative. I was scared as hell. I really liked him and found him very attractive. But I was hurting and my trust was broken. However I made it a point early on with Cole to be open , honest , and very clear about communication. In the beginning when we first met, Cole took me on actual dates, he was a total gentlemen, opening doors, paying for dinner and dates, and thinking up new and exciting dates. When we went out the first couple of times I hid it from him. I was pretty off track with my life, my diet and my levels and eating badly as well as cheating with higher phe foods. I was a lot eating ALOT Of rice!! I remember we went to Boston pizza and I ordered a rice dish of some sort that I know now was really high in phe.

I don’t really remember when I told Cole about my PKU, I think it was when we started to spend more time together after I moved out of my parents place and in with roomates. I think it was after we started staying over at each others houses and when we started cooking for each other. Cole was very interested and asked a lot of questions. He wanted to learn and be involved. I was so shocked and taken back by his interest. I had never shared so much about my PKU with anyone. His interest inspired me to reign back in my bad habits I had developed over the years of cheating and high levels. We began cooking and baking together , Cole took such an interest in finding foods I can eat, making sure I had low protein food and my formula. He bought me my low protein foods because I could not afford them at minim wage as a cashier and since i had moved out my parents place. Cole also drove me to my clinic appts in Vancouver since I didn’t drive. He also came into the appts with me and talked to my clinic staff and asked questions. Cole also taught his family about my PKU and what i could and could not eat. They all embraced my pku and dietary restrictions. I was never left out at family meals and events. I am so blessed to have them as my family now. I am forever grateful for all they have done for me over the years and the way the embraced me and how they care about my health.

Each day I strived to get better and honor their care and interest to my health. I wanted to make them proud and each day i felt better and stronger. Eventually getting off all my meds I was on for sideffects of the high levels. The days became weeks, and weeks became months, then years and life just went on. Working together and celebrating each low level or accomplishment, and working together when things got rough or when we where broke and struggling. Being the team that we are , supporting each other in every way.  There was our share of rough times , I can remember break downs, sitting on the floor of our apartment crying, so far off track and sick of the ups and downs, the freaking pku roller coaster. Cole holding me in his arms saying how we will make a plan and we will get back on track. Making goals talking out a plan and ordering food. Never letting it come between us and bringing us down. It made us stronger and more in love than ever.

Luckily Cole and his family are all pretty healthy eaters so really cole and I eat pretty similar.  We eat our own breakfasts because Cole has always been up before me with his work schedule, but when we are able to eat breakfast together, I like to make my low protein pancakes and pancakes for him. Or he makes us home made hashbrowns, or fried potatoes with veggies.  Lunch is a bit harder. on weekends or when we get a day off together we usually eat diffrent, or I try to match him with something low protein.

Dinner we are usually pretty close. I will either make mashed potatoes, squash, roasted potatoes and some sort of veggies. Than I through some meat in the oven to bake, broil or roast. I have had to learn to cook meat as I like to have dinner made for when Cole gets home from work. I tend to still over cook meat though as I am paranoid about making him sick. Cole also loves salad.

IF I make something low protein for me, like my pasta or pizza or whatever, I try to make the same as him. I have banned rice from my house though do to my addiction to it. So If make myself low protein rice , Cole makes his own dinner or I make him a salad and meat.

We don’t really drink, and if we go out to BBQ or a friends, almost everyone knows about my PKU now and they are happy to accommodate me. If they cant I just bring my own. It does not bother me to eat differently. Now that I am healthy I enjoy food.

My PKU has not been a burden on our relationship or our life. When it comes to diet. Where it is a burden is that we have not had any children. We have been together 8 years as I said, but we have yet to have kids. It is something that weighs on my shoulders so heavily. I feel that If I did not have PKU we may have already had a baby. I want to have a baby so badly. I want to have HIS baby! I want to make a baby with him, to be pregnant and to carry our child. It kills me that I have watched my friends for years have babies. There is nothing I want more then to be Coles wife and to have our child. But I have been on Birth control for many many years and we are no where near agreement on when we will have our first child. I believe Cole does not want to have a baby at all. The idea of it and the risk to him, are not worth it. With each year that goes by, on birth control and childless weighs a bit harder on my heart and my shoulders. It is my fear and my nightmare that i may not be able to have children.

Cole and I talked about it early on and we decided to hold off untill either BC agreed to cover all treatments for PKU, or that a blood phe home testing device was invented so we could see my blood levels instantly instead of having to wait. But each year that goes by that neither of those come to pass, I re evaluate our decision, which leads to a an I HATE PKU day. But I continue to wait, trying to be patient, for the goverment and for cole. I want him to want to have a baby and I wait for the day where he says yes.

If I did not have PKU i know for sure I would have already had kids. AS it is when and if we ever have kids, I only want 1 . I have never wanted more than one. If I can have one healthy happy normal baby, than that is all I can ask for , my dreams would be answered, and would not take the risk again or push my luck. It would be nice to have 2 but I don’t want to set my self up for disappointment or to let myself think about it.  One baby would be enough for me. I would be happy and content because my dreams and my prayers would be fulfilled and I would be blessed.

So you can see, PKU has not really had much of an impact on my relationship, or the way I live my life. I have said this before and been quoted on it many times, I do not let my PKU control me, It is a way of life, a lifestyle and I control it.

I treasure Cole and I love him so much. I am so lucky to have found my soulmate so young and each day is a blessing . I am lucky to be in love with my best friend, and 8 years later to be so in love and happy. His support, his love and his encouragement have helped make me who I am today. I do not know where I would be with out cole. He makes me want to be better to do better, and he inspired me to become the PKU advocate I am today. I am so glad I opened up my life and shared my PKU. Being open about it and sharing with my friends, my family, coles family and my co workers, keeps me accountable and I feel secure knowing the people in my life know about my PKU and accept it as apart of me. I am still me, not my pku.  It does not define me, but it is apart of me. I was not healthy until I embraced it and accepted it.  I am happy to share my story and my PKU with whoever asks me.

It surprises me still to this day when a friend invites us over for dinner and has lots of food I can eat, or when someone stands up for pku, advocates for it or educates others on it. It fills me with pride! I really know that I am cared about.  I feel special and loved. I could not ask for more.

 

 

 

 

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Low pro food / cooking, Managing the diet

The Holiday season is upon us!

Posted on by Amanda Horner

With the holiday season quickly approaching us, there has been much talk about how to keep family meals PKU friendly. Thankfully with all these new low protein foods and aces to treatments , the PKU diet is becoming more varied and its now more than ever possible to make low protein holiday dishes.  My family and Cole’s family have always made me feel included at family meals, and unlike some I love getting together at the holidays and look forward to all the amazing food! Below I will post what I usually eat at each holiday along with some low protein ideas . I will work on a recipe section to follow. 

Thanksgiving and Christmas  : Mashed potatoes, candied carrots , yam, sweet potatoes, squash, turnips, all vegetables,  egg less dairy free coleslaw ( mother in law makes mine separate and uses miracle whip. ) Corn, peas, Brussels sprouts, salad. I make my own low protein bread, or pumpkin pies, This is also a good time for the low protein carrot cake or zuchinni bread you can find on the cambrooke foods website.  cranberry sauce, or apple sauce .  I love making my pie with the cambrooke mix quick or wheatstarch crusts. Also I love sugar cookies and shortbread! I have my own sugar cookie recipe I will post at at a later date. I also have a butterscotch cookie one I love! 

Halloween/ Easter or Valentines Day: most hard candies are low in PHE or PHE free! My parents always sorted through my candy when I was younger, as I got older I learnt what candies I could have and which to avoid. My favourites where : Rockets, Popyee candy sticks, lolly pops, gum drops, jujube, jolly ranchers, cinnamon hearts, Jelly beans,  Gummy bears, star-burst, fuzzy peaches, and most clear or fruit flavoured hard candies.  NO CHOCOLATE!  though now we do have low protein chocolate! Vitaflo makes chocolate Easter bunnies, and Christmas avant calendars. 

 

BBQ summer ideas : Though summer ends this weekend I wanted to include BBQ season under holidays, as most kids are on summer holidays. it is also a time for travel, friends, family, road trips, and of course out door cooking, camping and summer sports. even fairs!! At our summer fairs, circus or PNE/ playland I usually get corn on the cob, candied apples, cotton candy, ice cones, sherbert icecream, pop corn and other low phe options available. However I could go on an on about BBQ. I did do a previous post in the summer with more detail so be sure to check that out too. . i will quickly list my favorite BBQ meals. 

Corn on the cob, grilled pineapple, grilled apples, vegetables in tin foil with spices and honey, grilled carrot fries, asparagus with garlic and lemon. Baked potatoe or sweet potatoe,portabella mushrooms with avacado. For low protein we now have the country sunrise spicy or mushroom buger mix, as well as the chicken nugget mix and the hot dog mix. They are so easy to make and all it requires is oil and water! Or you can go with many many pre made options by cambrooke such as the brooklyn dogs, camburgers, buns and more!

I know I am leaving alot out, but I wanted to be short and to the point to generate ideas and to give you all ideas on what you can do with each. I do not let my PKU take way my love of cooking, baking and trying new foods! i am always looking at what other people eat and thinking, how can I make that suitable for me? my favourite holiday foods are always Christmas! i love mashed potatoes with either carrots or turnip mashed right in! I love butter nut squash, yams and spaghetti squash with brown sugar and cinnamon. There are so many options and different ways to cook each! 

yum! All this food has me getting hungry! must be lunch time! 

I cant wait for christmas baking, cooking and canning! I love cole’s grannys  apple butter! I look forward to christmas goodies and all the canned goodies or garden goodies from Coles family! 

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Low pro food / cooking, Managing the diet

Eating out with PKU

Posted on by Amanda Horner

One question I get a lot , when educating others about PKU and the limitations of the low protein diet is : so I guess you cant eat out at all huh?

My answer: Yes I can!

 

You see, I know my body and I know my PKU , I know how higher phe foods make me feel, and I know what to do if I do eat out. I know what my good foods are and what foods to avoid. I have been doing this for a while now I joke with them lol. as I am 27 years old.  Sometimes I know the exact phe in most foods I eat or at least if they are  high or low.  I know most parents of young children dread eating out and have to bring the scale or book with them. It is harder when you are younger that’s for sure.

I do enjoy going out every now and then. Its usually for a special occasion, a nice treat, a date night with Cole or out with friends and family for something different. I stick to the restaurants I know the best, that will accommodate me or have menu items I know I can have. If I am going somewhere new, I research it first. I check it out on-line , see if they have a menu and read the reviews to determine if they might accommodate me. Other times I call ahead.

I usually always get the same thing when I eat out and have my order down pat ” Mashed garlic potatoes, no gravy but butter is fine, and whatever your seasonal grilled vegetables are. Can I get it all on one plate instead of 2 small side dishes? ” Sometimes I order a drink to. Either a strawberry daiquiri or margaritas. My favourite is a Bellini. Otherwise I stick to water .

I tend to gravitate towards more family restaurant, bar/ grills , and sometimes pubs.  I don’t like to eat out at pubs to much because they don’t usually serve mashed potatoes. So I end up getting sweet potato fries or a salad. So If I go to a pub I usually go for lunch.

Some of my favourite restaurants when I lived in Victoria was,  moxies classic bar and grill. I just loved there hot skillet of garlic mushrooms!  My top favorite though was a local hidden gem , My Chosen Cafe. It is a beautiful country restaurant. Cole and i went there enough we knew some of the staff and most always got to sit in the patio by the fire place.  The food was real home made food, with really big portions. I never left there hungry. Because my order is unusual I usually end up with the smaller side portions. At My chosen all portions are huge! Sometimes I got mushrooms or sometimes I got the grilled veggies that included cauliflower, carrots, broccoli and the traditional favourites. sometimes even squash and asparagus. Whatever was in season that time of year. The drinks where so thick and made with real berries. The potatoes where not instant and everything was perfection! Every time I go back to Victoria I Make sure to go there at least once!

I can also eat at Denny s, white-spots, and other chain places. Sometimes If I have a low day or a few low days I splurge and get a rice dish.

Here in kamloops we have been to the westsyde pub, where I get sweet potatoes and fries. WE have been to the haulston , they have made me a veggie rice pilaf with no eggs or meat, and they have also done potatoes and corn  or other veggies.  We have been to Crush lounge, for my birthday we went there and i splurged on a mushroom rice pilaf. We also go alot to original joes. I get potatoes and broccolini ( baby broccoli )  there or a thai sweet chilli vegetable rice bowl. With no chicken or meat. They hold the almonds and the other sauces they normally use. Actually we where there last weekend.  We have also been to chapters, though the food was terrible I had potatoes and veggies there.

I also sometimes splurge on my most favourite dish, sushi! I am a regular at Argioto sushi. I always get the avocado roll or the yam tempera roll. I DO NOT recommend eating sushi or rice dishes when you  eat out with PKU unless you have a very high tolerance or your clinic and dieticians say its ok. These are things I started to cheat with when I was bad and went off track with my PHE and diet. So every now and then I treat myself.  It is not safe for everyone and please dont eat them just because I do!  I myself even need to cut back,, specially if I want to keep my levels low enough for pre conception than I have to stop all together! I use to eat rice all the time!! and way to much. I was addicted to it and my levels suffered and so did my brain.  I have cut all rice from my diet at home and if i ever eat it its when I eat out as a special treat. But I do not recommend this at all for anyone else !! Its a bad habbit I am working on breaking. In fact I have only had sushi once in 3 months and it was yesterday while we where out and i needed something quick.

After not eating it for so long I can really feel the difference in my body and how it effects me. I think this will be my deterrent in the future to not try it again.

If in doubt when eating out, ask to speak to the chef, call ahead or when all else fails stick with a salad! I personally think salads are boring and I get tired of them but when eating out the chefs try to make them special by adding dry berries, avocado, fruit or new dressings.  I had a fantastic salad here in kamloops at a salad bar in sahali, it had apples, avocado and dried cranberries or strawberries. it was very filling! I had a sweet onion dressing on it. I normally stick to ranch light home style but I wanted to try something new.  I can also get some great salads at places like subway.

The only restaurant I have been to that was not accommodating was the macaroni grill in Victoria, but I think it was a matter of them not understanding why I needed alterations or substitutions or maybe it was that one day, one chef or server because we went back for a friends birthday before we moved and they where more understanding and able to find me something!

I also like denny’s for breakfast sometimes , I get the shredded hash browns with maple syrup and they fry up onions, cherry tomatoes, and mushrooms on top for me. I also get a OJ or apple juice when I am there. Lunch they make a skillet or roasted potatoes and vegetables topped with avocado, and for dinner I tend to get mashed potatoes, corn and apple-sauce. I also can have salads there, non dairy smoothies, and sometimes if my tolerance allows, white toast and jam!

So to all those who ask me if I can eat out , yes I can and I do enjoy to eat out! You can to with preparation, research and a good understanding of the PKU diet.

 

 

 

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Managing the diet

Phenyl Ade PheBloc Tablets.

Posted on by Amanda Horner

A few days ago while I was on night shift, I was working with a friend of mine who is working as a care aid but is taking her Registered Nursing course. She is in her second year and we have been discussing PKU together.  On this particular shift we where discussing different forms of treatments available like Peg Pal, Kuvan and LNAA’s. We where also talking about different formulas. This was also the night I was working on my formula Journey and Formula Summery blog posts. To look up some examples to show her, I pulled up the website for the Phenyl ade product line. Together we read about their diffrent options and then I came across the PheBloc tablets. My clinic had told me about them before but admittedly where I was at that time in my life I was not that interested.

I was surprised to see, that the website said that by taking the Phe Bloc Tablets, You could change your diet from 20 % regular foods and 80 % low protein to the opposite 20% low protein and 80 % regular foods. There was a list that had what products you could eat more of , like regular rice, and breads. Which is what sparked my interest. I love Rice and bread and avacado sushi or yam sushi.  From what I understood, is that you take multiple tablets every day and it floods your blood with other amino acids so much so that it blocks the phe in your blood from getting into your brain . I was very keen to learn more, specially since it is actually a covered treatment unlike KUVAN which helps in some people to activate the enzyme that breaks down phenylalaine into tyrosine.  KUVAN is said to only work with certin types of PKU and does not have a great sucess rate in Classical PKU , which is what I have.

So yesterday I called my clinic and this is what they told me.

My dietitian Taryn , does not recommend it for women hoping to get pregnant  soon or of child bearing years , as it does not lower your PHE levels. The PHE in your blood is still high, but it is suppose to lower how much PHE gets into the brain. However there is no way to test how much PHE is getting into the brain to be sure. So there is still risk. What the PHEbloc tablets are suppose to do is push through all the other amino acids through to the brain and that is suppose to block the PHE from being entered into the brain. So you are suppose to take the tablets every day and pretty much flood your blood so there is more amino acids rather than PHE. Where I was really excited about Phebloc, this does not seem like something I would want to take the risk of. They do recommend it for others who have very high levels and are having a hard time bringing them down, or for adults returning to diet. Some adults have reported that they do feel better over all. That their side effects feel more manageable. However there blood levels still come back high. We do have a few patients on Phebloc at our clinic but,  they are adults who regularly have levels of like 20 to 30. Or adults returning to diet who eat more regular food.

I think that my Bettermilk and low protein foods are working fine for me and I am happy with my levels so this is not something I would be interested in. Just thought id pass the information on to those who are interested.

 

The Reason why My Dietitan does not recommend Phe Bloc for women of child bearing years and women who are wanting to become pregnant is  that even though it blocks PHE from entering the brain, it does not lower the PHE in your blood , and so that blood can still go to the uterus. High levels are toxic to a uterus and can cause damage to the baby.  Whatever your levels are in your blood are double in the uterus and toxic to a unborn fetus. So even though PheBloc can limit the amount of phe that gets into your brain, you still have high phe levels in your blood.

Even though they can test to see the levels of PHE in your brain with an MRI or brain scans, they are costly and not worth it to bring every patient in regularly to use these invasive testings. It is not as a simple as a blood test.

It is for these reasons, I have decided PHE bloc and LNAA therapy is not something I am interested in at this time. Though i do not doubt it may work for others.

 

 

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Managing the diet

A summery of PKU Formulas.

Posted on by Amanda Horner

Here is a summery of as many formulas I can think of. ( wording is not my own, information taken from the websites provided) Please be sure to check with your dietitians and medical staff before requesting a sample or switching formula.

Applied Nutrition: 

http://www.medicalfood.com 

Phenyl Ade Essentials : 

The only PKU formula with flax & soluble fiber to support heart health

American Heart Association recommend 4:1 ratio of Omega-6 to Omega-3

Complete with essential vitamins and minerals to help meet daily requirements

5 great choices: Chocolate, Vanilla, Orange Creme, Strawberry and Unflavored

Packaged in cans and convenient ‘go anywhere’ single serve pouches

Suitable for individuals over 1 year of age with proven PKU

PhenylAde Essential Drink Mix is the foundation for building a healthy PKU diet. This great tasting PKU product provides an ideal blend of vitamins and minerals with a superior amino acid profile to meet the needs of children, teens and adults following a PKU diet. PhenylAde Essential contains less saturated fat than other leading PKU formulas with added fiber and flax to support heart health

Phenyl ade RTD 10 :

  • Only 60 calories per bottle
  • Complete with essential vitamins and minerals
  • 10g protein equivalents in each 2.5 fl oz bottle
  • No preservatives
  • No artificial colors or flavors
  • Suitable for individuals over 4 year of age with proven PKU

PhenylAde RTD is a ready to drink PKU formula. This great tasting PKU product helps you meet your full daily prescription in less total volume by supplying 10 grams of protein equivalent in each 2.5 fluid ounce bottle. PhenylAde RTD is complete with vitamins and minerals including a superior amino acid profile to meet the needs of children, teens and adults following a PKU diet.

Phenyl Ade 40: 

  • Only 1/2 gram of fat per serving
  • Reduced volume for easier dietary compliance
  • Complete with essential vitamins and minerals to help meet daily requirements
  • Available in convenient ‘go anywhere’ single-serve pouches
  • Mild, neutral flavors allows for easy drinking
  • Suitable for individuals over 1 year of age with proven PKU

PhenylAde40 Drink Mix is a reduced calorie, fat and volume PKU formula. This great tasting PKU product helps you meet your full daily prescription in less total volume. It provides an ideal blend of vitamins and minerals with a superior amino acid profile to meet the needs of children, teens and adults following a PKU diet.

 

Phenyl Ade 60 :

  • Only 50 calories per serving
  • Excellent for weight management
  • Low volume for easier dietary compliance
  • Complete with essential vitamins and minerals to help meet daily requirements
  • Available in cans and convenient ‘slimline’ single-serve pouches
  • Suitable for individuals over 1 year of age with proven PKU

PhenylAde60 Drink Mix is a high protein, low calorie, low volume PKU formula. This great tasting PKU product mixes easily with only 3 fluid ounces of cold water allowing you to meet your full daily prescription with less to drink. The superior amino acid profile and full range of vitamins and minerals help meet the needs of older children, teens and adults following a PKU diet.

Phenyl ade Amino Acid Blends::

  • Create your own PKU formula by adding to low protein foods or drinks
  • Fat free, sugar free & low calorie
  • Tasteless and Odorless
  • Boost amino acid protein intake by adding to current PKU formula
  • Available in cans and convenient ‘slimline’ single serve pouches
  • Suitable for individuals over 1 year of age with proven PKU

PhenylAde Amino Acid Blend and MTE Amino Acid Blend are a precise mixture of essential and nonessential amino acids for the dietary management of Phenylketonuria (PKU). These products allow you to “create your own PKU formula” to improve taste, variety and flexibility to reduce formula fatigue and improve diet compliance.

 

Phenyl Ade Amino Acid Bars: 

  • An alternative to liquid PKU formula
  • Packaged in convenient “go anywhere” travel bars
  • Available in a great tasting Chocolate, Chocolate Crispy and White Chocolate flavors
  • Suitable for individuals over 1 year of age with proven PKU

PhenylAde Amino Acid Bars are an innovative medical food intended to provide an alternative source of protein, fat and carbohydrate for the dietary management of PKU. PhenylAde Amino Acid Bars can supplement all or part of the protein prescription when traditional liquid formula is insufficient or not tolerated. Available in 3 delicious flavors, PhenylAde Amino Acid Bars look, taste and smell like real chocolate.

 

Phenyl Ade PheBlock : 

  • Simplifies PKU diet management
  • An alternative to PKU drug therapy
  • Allows for a relaxed PKU diet
  • Eliminates need for expensive low protein foods
  • Available in Tablets or Powder
  • Suitable for individuals over 12 years of age with proven PKU

PheBLOC LNAA allows for a relaxed PKU diet which includes more choices of natural protein from a wide variety of foods. The relaxed PheBLOC LNAA diet helps to reduce the burden of high priced, low protein specialty products. You will have more choices in restaurants and social settings making the diet less complicated.

SHS Nutricia 

http://nutrition.nutricia.com/ as well as  https://www.myspecialdiet.com/ and http://www.nutricia-na.com/index.htm

Add-ins:

Add-ins is a flavourless phenylalanine-free powder containing balanced amounts of the other essential and non-essential amino acids, fat, vitamins, trace elements, calcium, phosphorus and magnesium.

Easiphen:( 8 years and up) 

Easiphen is a ‘ready to drink’ phenylalanine free liquid product containing a balanced mixture of essential and non-essential amino acids, carbohydrate, fat, vitamins, minerals and trace elements. Available in Forest Berries flavour. A food for special medical purposes.

Liquid Duocal : 

Liquid Duocal is an emulsion consisting of a blend of carbohydrate and fat. A food for special medical purposes.

Lophelx LQ 10 : ( 4 years and up) 

A flavoured phenylalanine-free liquid containing a balanced mixture of the other essential and non-essential amino acids, vitamins, trace elements and some minerals. A food for special medical purposes. Comes in Berry, Juicy Orange, and Tropical

Minaphelx: ( ages 1 to 10 ) 

Minaphlex is a palatable phenylalanine free drink mix containing essential and non-essential amino acids, carbohydrate, fat, vitamins, minerals and trace elements. Available in Unflavoured, Pineapple & Vanilla or Chocolate flavour (contains colour, sugar and sweeteners). A food for special medical purposes.

 

Phelxy 10 bars : ( 8 years and up) 

The Phlexy-10 Bars is a citrus fruit flavoured bar free from phenylalanine, but containing a balanced mixture of essential and non-essential amino acids, fat, carbohydrate and colouring. A food for special medical purposes.

Phlexy 10 Capsules: ( 8 years and up) 

Phlexy-10 Capsules are cellulose capsules, free from phenylalanine but containing a balanced mixture of essential and non-essential amino acids. A food for special medical purposes.

Phlexy 10 – Drink Mix ( 8 years and up) 

Phlexy-10 Drink Mix is a flavoured powder, free from phenylalanine but containing a balanced mixture of essential and non-essential amino acids, carbohydrate, colouring, sweetener and flavouring. Available in Citrus Burst, Apple and Blackcurrant and Tropical Surprise Flavours. A food for special medical purposes.

Phlexy 10 – tablets ( 11 years and up )  

PHLEXY-10 Tablets are free from phenylalanine but containing a balanced mixture of essential and non-essential amino acids. A food for special medical purposes.

Phlexy Vits: (ages 11 and up )

Phlexy-Vits is a concentrated powdered vitamin, mineral and trace element preparation. A food for special medical purposes.

Phlexy Vits Tablets : ( 11 years and up ) 

Phlexy-Vits are tablets containing vitamins, minerals and trace elements.

PK-Aid 4 ( 6 months and up) 

PK Aid-4 is a phenylalanine free unflavoured blend of essential and non-essential amino acids. A food for special medical purposes.

Anamix  Junior LQ : (1 to 10 years ) 

A phenylalanine-free drink containing a balanced mix of the other essential and non-essential amino acids, carbohydrates, fat (including docosahexanoic acid (DHA)), vitamins, minerals and trace elements. Available as unflavoured, orange or berry flavoured.

Lophlex LQ 20 ( 4 years and up) 

Lophlex LQ is a “ready to drink,” phenylalanine-free liquid containing a balanced mixture of essential and non-essential amino acids, carbohydrates, vitamins, trace elements and some minerals. Available in Berry, Orange and Citrus flavours. A food for special medical purposes.

XP Analog :( 0 to 1 years ) 

XP Analog is a phenylalanine free powdered infant feed, containing essential and non-essential amino acids, carbohydrate, fat, vitamins, minerals, and trace elements. A food for special medical purposes.

XP Analog LCP ( 0 to 1 year) 

XP Analog LCP is a phenylalanine free powdered infant feed supplemented with long chain polyunsaturated fatty acids (LCPUFA’s), particularly Docosahexaenoic Acid (DHA) and Arachidonic Acid (AA), containing essential and non-essential amino acids, carbohydrate, fat, vitamins, minerals, and trace elements. A food for special medical purposes.

XP Maxamaid : ( 1 to 8 years)

XP Maxamaid is a phenylalanine free drink mix containing essential and non-essential amino acids, carbohydrate, vitamins, minerals and trace elements. Available in Orange flavour (contains colours, sugar and sweeteners) or Unflavoured. A food for special medical purposes.

XP Maxamum : ( 8 years and over) ( powder) 

XP Maxamum is a phenylalanine free drink mix containing essential and non-essential amino acids, carbohydrate, vitamins, minerals and trace elements. Available in Orange flavour (contains colours, sugar and sweeteners), Strawberry flavour (contains colours, sugar and sweeteners) or Unflavoured. A food for special medical purposes.

XP Maxamum Liquid TETRA Packs : ( 5 years and over) 

A flavored phenylalanine-free amino acid-based drink containing a balanced mix of the other essential and non-essential amino acids, carbohydrate, fat, vitamins, minerals and trace elements for the dietary management of phenylketonuria (PKU). Suitable for ages 5 through adult, including pregnant women. Come in Forest Berry and Orange.

Periflex Infant

phenylalanine-free powdered infant formula with iron, containing DHA and ARA, for the dietary management of phenylketonuria (PKU).

 

 Periflex Junior

  • Phenylalanine-free
  • Easy transition from Periflex Infant
  • Contains a balanced mixture of all other essential and non-essential amino acids, carbohydrate, fat, vitamins, minerals and trace elements
  • Excellent balance of linoleic acid and α-linolenic acid, providing a preferable 4:1 ratio of n-6 to n-3
  • Age-appropriate DRI formulation
  • Periflex Junior provides 25 g of protein equivalent and 14 g of fat per 100 g of powder
  • Meets protein requirements in lower volume
  • Pleasant taste, smell and texture
  • Available in unflavored and orange
  • Optimal nutrition of all ages
  • Osmolality (mOsm/kg)

Preiflex Advance : 

A phenylalanine-free, powdered medical food for the dietary management of phenylketonuria (PKU) in older children and adults, including pregnant women and women of child-bearing age.

Milupa PKU 2: 

A phenylalanine-free powdered medical food for the dietary management of phenylketonuria (PKU) in children over 1 years of age.

Milupa PKU 3: 

A phenylalanine-free powdered medical food for the dietary management of phenylketonuria (PKU) for adolescents, adults, and pregnant women

Lanaflex : 

amino acids (large neutral amino acids and lysine) for the dietary management of phenylketonuria (PKU) in adults (over 18 years of age) who are no longer following a phenylalanine-restricted diet.

 

Vitaflo

http://www.vitafloweb.com/

PKU Start : ( birth to 1 years ) 

PKU start is a ready-to-feed phenylalanine free infant formula, containing essential and non essential amino acids, carbohydrate, fat, vitamins, minerals, trace elements and long chain polyunsaturated fatty acids (LCPs); Arachidonic acid (AA) and Docosahexaenoic acid (DHA)

PKU Squeezie ( 6 months to 10 years) 

PKU squeezie is an apple & banana flavoured ready-to-feed phenylalanine free protein substitute containing essential and non essential amino acids, carbohydrate, sugar, vitamins, minerals, trace elements and the long chain polyunsaturated fatty acids (LCPs); Arachidonic acid (AA) and Docosahexaenoic acid (DHA).

PKU Gel – ( 6 months to 10 years)

PKU gel is a powdered phenylalanine free protein substitute, available in unflavoured, orange and raspberry flavoured options, containing essential and non essential amino acids, carbohydrate, sugar, vitamins, minerals and trace elements. Flavoured options contain sweeteners.

PKU Cooler System: ( 3 years to adult) 

The PKU cooler® system is a range of ready-to-drink phenylalanine free protein substitutes, available in neutral-tasting (white), and flavoured (orange, purple and red) options, containing essential and non essential amino acids, carbohydrate, vitamins, minerals, trace elements and the Omega-3 long chain polyunsaturated fatty acids (LCPs); Docosahexaenoic acid (DHA) and Eicosapentaenoic acid (EPA). Contains sugar and sweeteners.

PKU Express System: ( 3 years to adult) 

PKU express is a range of powdered phenylalanine free protein substitute, available in unflavoured, orange, lemon and tropical flavoured options, containing essential and non essential amino acids, carbohydrate, sugar, vitamins, minerals and trace elements. Flavoured options contain sweeteners.

Cambrooke Foods

http://www.cambrookefoods.com/

Camino Pro Amino Acid : 

  • For PKU and MSUD patients age 5 and older
  • Ready-to-drink pouches
  • Available in Fruit Punch and Pina Colada flavors
  • Great flavor and no aftertaste
  • Reduced sugar and low volume
  • Complete with macronutrients, vitamins, minerals, and trace elements.

 

Bettermilk : 

A mix-with-liquid powdered formula for PKU that makes a creamy, milk-like beverage with a hint of sweetness.

BetterMilk™ 3-12 is designed with 10 grams of Glytactin and optimal age specific vitamins and minerals for those ages 3-12. It is available in two delicious flavors: orange creme and strawberry creme.

BetterMilk™ 12+ is designed with 15 grams of Glytactin and optimal age specific vitamins and minerals for those ages 12 and older. It is available in two delicious flavors: orange creme and strawberry creme.

BetterMilk™ original is designed with 15 grams of Glytactin and vitamins and minerals for those ages 1 and older. It is available in unflavored.

  • Made with Glytactin™ protein, our advanced proprietary blend of glycomacropeptide and essential amino acids, that is better utilized by your body.
  • Helps to better maintain blood Phe levels between meals.
  • Low volume – mix with 4 fluid ounces of water.
  • 32 mg of DHA Omega-3 Fatty Acids per serving (DHA Omega-3 for a healthy brain and heart!)
  • Probiotic cultures to support digestive health.
  • Great non-medicinal taste.
  • Combines well with your favorite foods.

Camino Pro Complete Bars: 

A complete and balanced meal for the PKU patient. It has age specific vitamins and minerals. Each bar includes, 15 grams of Glytacin, Vitamins, minerals, fiber, fat and carbohydrates. Comes in peanut butter and Fruit Frenzy flavors. Ready to eat. Each bar has 3 grams of fiber.

Restore: 

Restore has 10 grams of hole protein per 16.9 oz ( 500 ml) , is made with Glytacin. It includes amino acids, carbohydrates, electrolytes , B vitamins and is a source of calcium.  Restore is an isotonic beverage, that re-hydrates while you exercise and replaces electrolytes lost through perspiration. Comes in 2 flavors. Lemon Lime and Tangerine.

Camino Pro Swirl :

Camino Pro Swirl is the newest formula available.  It is a powdered formula that can be mixed with 3 to 4 ounces of cold water ( thick) to make a creamy pudding , or mix with 6- 8 ounces to make a shake or smoothie!

Swirl is made with 15 grams of Glytacin Protein. It is fortified with vitamins and minerals. Swirl is naturally high in the Large Neautral Amino Acids (LNAA’s) Threonine, isoleucine, and Valine. Each serving contains 32 mg of DHA Omega 3’s. Can be used as a meal replacement or a snack.

 

To the best of my knowledge, this may not be a complete list of all available formulas. If you know of any others please feel free to message me with information. As you can see, there is a such a variety. We are so blessed with the advancements of PKU through out the years in PKU formulas. I am forever grateful to all the low protein food companies and manufacturers of our formulas.   It is really incredible and inspiring to see such a variety today. Not all products are suitable for everyone with PKU and no 2 products are the same. If you wish to try any of these formulas please check out the websites listed for more information and consult your PKU clinic before requesting a sample.

 

 

 

 

0
Managing the diet

My Formula Journey

Posted on by Amanda Horner

For the past little while I have been having writers block and was unsure on what I could write about here in my PKU blog that would be interesting and valuable. I have been looking for suggestions and I got a reply from Jane McDonald this evening on writing a blog post about great vs nasty formulas and daily formula compliance. This gave me an idea to record my personal journey with formula.

My Journey with my formula has been a lengthy one and not always easy. I myself have been on many different formulas.  I began my formula journey on Phenyl Free.  I am assuming based on its name that it was a phenylade product. It was made to taste like potatoe starch and was unflavored. My mom mixed it up every night in our blender and flavored with Nestle Strawberry quick. I was on this formula until I was about 12 I believe. As it was discontinued. When I was 11 and 12 they first came out with the phenyl ade amino acid  bar, the crispy and the plain. They where AWFUL! It was the first non formula meal replacement bar . The crispy had rice krispies in them. Though I preferred the Crispy I much rather would not have either. It is still an on going joke between adults my age.

When I was admitted to BC Children’s hospital I trailed the new phenyl ade essential formulas. At that time there was only the 3 , the Vanilla, strawberry and Orange Cream. I was not a fan at all of the Vanilla and the strawberry. I am not sure how to describe the taste other than fake and chalky. I had trouble staying compliant with the formula as I got older , I found it separated to easily, I could only drink it cold and with a straw. Also I was chalky and had an after taste. I ended up pouring it down the drain alot. I stayed on this formula until I was 19. At 19 they finally had liquid formulas.  I tried the 2 flavors of the SHS XPHE Maxamum Forest Berry and Orange. I loved them instantly, and was thrilled they came in “juice boxes” I switched to both formulas in the beginning. However, I am very sensitive to formulas and they really upset my stomach. So even though I loved how they tasted , I started to notice I was re acting to the forest berry and had to switch to just the orange XPHE Maxamum. I stayed on the Xphe Orange Maxamum until I was 23 , when I noticed the taste had changed. I am very sensitive to changes in my formula and have had many arguments with my clinic. They don’t seem to believe me , They said they tasted them and noticed no change. but I am the one drinking it every day and it tasted awful and i began reacting to it too.  By this time there was many many new formulas. So I got samples of every formula available in Canada.  For a while I drank the Vitaflo coolers, but they smelt to strongly of fish oil and the omegas where to hard on my stomach. Then I tried the Camino Pro amino acid blend by Cambrooke. They came in tropical and berry blast.  They did not taste bad but I didn’t think they tasted great either. They where very gritty and had a strong after taste. I just was not satisfied with the formulas I had been trying.

On my next clinic appointment my dietitians had me trial almost every form of formula including ones i had tried previously just in case I could tolerate them or my taste buds had changed.  So I tried samples of the Phenyl ade essentials, 40s and 60s. I tried the powder forms of the xphe maxamums and those where so terrible i voted them the worst formula I had tried. Way to bitter, gritty and such a strong after taste. A strong second for the worst spot was the Vitaflo Express. Even though it was a smaller volume I couldn’t stand it. Very sweet and bitter, very watery or chalky depending on how much water you used. They came with a little shaker. Much to strong for me and I ended up pouring them down the drain at work a few times. I was to old to try the gels and squeezie as they are only for children but they seem like a very good and fun idea.

I eventually tried the bettermilk by cambrooke. It was so different it was an adjustment for me. It is creamy and does not have an after taste.  It took a while for me to get use to it. I did not like the unflavored flavor so I decided to go back to my roots and flavor it with the strawberry quick. I feel in love! Probably the best formula I have ever had,  I drank it for 7 months, But then they changed it too! I was heart broken. It was doing wonders for my sensitive stomach and my IBS. However, this time I was not alone! A lot of people noticed the change and we all wrote or called in to Cambrooke.  I was to upset. They did promise they where changing it back but I couldn’t wait that long and go with out a formula so it was back to the drawing board.

I then tried the Cambrooke Restore. It tastes just like Gatorade or Powerade. Its liquid and tastes just like juice. Its thin and super easy to drink. However not enough protein equivalent for me. Id have to drink 6 of them and that was way to many calories and way to much liquid for me. There was no way I could get them all in in a day. I also tried the Cambrooke Complete bars. They seemed like a great idea and I had been hearing a lot about them. They are essentially a meal replacement bar you eat instead of drinking formula. However I did not like them either. They where super thick and chewy. I could barely get through one. I did not like the taste either or the flavors. I could not see myself eating them regularly.

In the end I went back on the Phenyl ade Orange cream with much reluctance. I was pleasantly surprised though. This time around i loved it! And I found it much easier to drink and to travel with. I use to mix it with water in a cup , stir it with a fork and drink it with a straw. This time around I shook it in a sports bottle and drank it with a straw. I had no problem drinking my full amount. It was more volume than I was use to and I stayed full longer. it really filled me up and tasted great. Only problem was that it was high in calories. I drank it again for over a year. I had decided not to go back to the bettermilk because I really enjoyed my formula again.  As the months went on though and my struggle with my weight loss persisted I started to get really concerned with my calorie intake. The clinic suggested I try the Phenyl ade amino acid MTE blend. You can add it to formula, water and juice. It cut my intake in half so I was having 1 scoop of my formula and 1 scoop of the MTE 3 times a day, of course that created another problem.. now I was hungry!!  I just could not seam to win!

Then one day a few months ago I was at a PKU friends house for lunch and I forgot my formula, She was on the bettermilk and I tried it again. Was sooo very happy that it tasted great again! So good I called my dietitian and made the switch back. They sent me samples of the new flavored bettermilk in the orange and strawberry.  I was not a fan of the strawberry, tasted like the phenyl ade essentials, fake and to sweet. The orange was not bad, it tastes like orange sherbert. I still preferred my unflavored. Since I am trying to loose weight though I was looking for something to add for flavour that did not have as much calories as the strawberry quick. That is when Cole suggested I use his MIO. When we moved to kamloops, Cole did not like the taste of the water and he began using MIO in his water. I prefer my water plain and ice cold. So I had not been using it. SO Cole and I went to the grocery store and we bought one of each flavor for my formula. I love it! Its been working out so great. I have so many different flavors now! Even more since I found crystal light and Disaini, and nestle flavors that do not have aspartame. AS I have mentioned in my previous blog posts. They do not use aspartame, they use surculouse. Which is unable to be broken down in the body and is excreted through urine. SO there fore there is no calories or protein. I am not adding anything on to my calorie intake and I am not taking away from what I can eat in a day! Finally , a win win situation. I am satisfied and happy once again , its easier to be compliant with formula when you enjoy it! I enjoy my bettermilk so much I drink it after a meal so I can savor it! another bonus is that I don’t need to use a straw either! I have drank my formula with a straw for as long as I can remember and was very dependent , id have to take straws with me every where and If I forgot I couldn’t drink my formula. I have stacks of straws every where, my house, my purse, my back pack, at work , at my in laws, and even at my friends houses!

I drink my bettermilk in a sports bottle with water and shake it up. I am suppose to have 1 package 4 times a day, but because the volume is smaller with bettermilk I have been doubling up and drinking 2 in the morning with breakfast and 2 with dinner.  With no formula at lunch.  Specially on night shifts since I am asleep through the day and miss lunch anyways this works out really well with me. As long as they don’t change the taste again , I am quiet happy to continue to stick with bettermilk for as long as possible.

My Journey has been long, but I am happy with where I had ended up. It is so important to have a formula you enjoy and that you can drink. I could not imagine not being able to choose. We are so blessed to have so much variety now. I am very thankful that my clinic has such great aces to formula. They are willing to bring in any formula that is available in Canada for me to try and I thank them for that.

My journey would not be complete with out  big shout out and thank you to Cambrooke foods for inventing formula . It really does help my digestive system health. It helps manage my IBS and my sensitive stomach is very happy :)

 

 

3
Managing the diet, That's my PKU life

Depression Hurts

Posted on by Amanda Horner

My name is Amanda and I have depression.  actually many years ago,  I was diagnosed with Chronic Major Depression and Panic Disorder.

On June 24th 2012 I made the difficult decision to accept my depression and to begin treatment with ant depressant medication.  I had been battling Chronic Major Depression with panic disorder and panic attacks for a number of years.  specially after my car accident in 2008. when I was hit by a car walking my bike home. I was hit while walking and had had knee surgery 15 weeks prior, the accident had a serious impact on my physically and changed my life for ever.  Between that , and other physiological troubles and trouble staying compliant with my diet, my life was a mess and the depression robbed me of the quality of life that I deserved.  My life was a constant battle with my emotions, self confidence and image. It was a merry go round of ups and downs. I could barely leave my house with out a panic attack.  spent many years being dependant on cole for everything. I refused to drive and could not hold a job.  Cole would work all day and then come home and have to drive me around because  I could not be on my own and could not drive.

Over the years I had tried managing my depression with various means such as counselling, anti anxiety meds and various anti depressants but I never stuck to any treatment and had a hard time admitting I needed help. Also Cole is against medications and being on pills so i tried to manage on my own and keep it to myself just how much I was struggling and I could not really talk to anyone about what I was going through. I felt week and like a failure.  I felt like I let my friends down, my family and coles family. I did not like myself. Could not understand why cole put up with me , or why he stuck around.

I hated myself and how my life was going. I felt so weak and when friends and family around me told me to get over it or try harder I took it hard.  telling me to do something about it or just do it was not helping.

I had talked to my pku clinic and family doctor many times about it , and they always recommended “pills” but i could not get around the astigmatism of depression and “pills”  so i tried managing on my own by pretending I didnt need help or have a problem.  The anti depressants i had tried through out the years I never stuck to , I had every excuse not to, to many side effects or not working, or when they would work id take myself off them after a while. Not being able to justify being on pills but also figuring i didnt need them any more and could manage on my own.  As a nurse I know how important it is to stay on a medication even when its working, you cannot stop. But I told myself these things anyways.

Finally in 2012 I sat down with my clinic one more time and my dieticians told me, it was not my fault and just like my brain needed my formula and my low protein diet, my body needed the pills to regulate the serotonin.  I had a chemical imbalance in my body and though my depression started with circumstances and life events, adults with PKU even when on diet do not make enough serotonin and its common for pku adults to struggle with depression.

So cole and I had a very long talk and talked about the pros and cons, just how much I was struggling to have a normal life and how my depression has controlled my life for so many years, and our relationship.  How much weight I carried on my shoulders for letting everyone down, how bad i felt about being dependant on him, for not being able to be independent and to look after myself on my own. Also about how badly the panic attacks scared me. I had a break through and realized i could not keep living my life the way I was living it. I wanted better for myself and for us. I wanted a brighter future and I wanted to be coles equal and to be independent on my own. i wanted to hold a job, to not live my life in fear and in the chronic pain I was living in. I wanted to spend my life with him , to get married and have children, to travel and be a friend people could be proud of. I wanted his family to be proud of me and my own. I wanted to deserve him and his unending love. I did not want to make him resent me or one day realize he didn’t want this life and to be held back like this.

So I went to my doctor and on June 24th 2012 I started on a 10 mg dose of Ciprelex. i had side effects for 2 weeks before i started to notice the changes.

1 year later I feel like I am the strongest I have ever been, I haven not had any panic attacks. I am more active. I feel so much more free. I drive, I have my own car, I work . I have had the same job for 10 months and I have been working in a full time night line since March.  I go out during the day on my own and visit my few new friends or even just on own. Going to the grocery store even is a big deal to me. because I can do it on my own. having my own money and my own car has opened up doors for me. I am proud of all the changes in my life. There has been so big ones to.

Moving to a new town and a new city being the biggest.  Leaving my friends and family behind and starting  a new life , a new chapter and a fresh start. This is something I never thought id have for myself. Now we own our first home and we are doing so well. I am truly happy.

We are planning on travelling this year, and we are talking about starting a family sometime in the i hope not to distant future.

I know now, I could have never made these changes on my own, it was not just the pills either. The support i have had from cole , our friends and family have gone along way. I see things differently now to. I am a much more positive and drama free person. I feel stronger and  I walk a little taller.

I don’t talk about my depression, or what I have gone through to often, in fact, until this post, most people , friends and family probably didn’t no. Well I am sure they knew I had depression and anxiety from my actions and my life, but I have never really come out and said it , or that I am on medication. However I am no longer ashamed. I cant help it and its apart of me. Just like my PKU. But it does not control me any longer, because I made the decision to take back my life.

Its been a long journey , and a lot of work. I can see the light now. I had hopes and dreams and I know what it is like to be truly happy and I appreciate my life, my family and my friends. I am not ashamed of my past now and who I was . I had to get through that to be who I am today.

I know now, no matter what happens, I will be ok.  I have learnt to live my life and take one day at a time. every morning I wake up, is a fresh start and a chance to do what I didn’t do yesterday.

 

2
Low pro food / cooking, Managing the diet, News

PKU medical Treatment Coverage in Canada.

Posted on by Amanda Horner

There has been alot of discussion lately regarding coverage of our low protein medical foods , and formula across Canada. Every province seems to be very different.  Despite our reputation for universal care in Canada, we are lacking in the treatment of PKU. Though British Columbia has a faling grade on the report card for access to treatments.  As i mentioned in my post about the seminar I attending this past weekend, Ontario is now providing coverage and aces to KUVAN and Saskatchewan is rumoured to be following next. 

Kuvan was approved my Health Canada in 2010 and is being used in many countries around the world and even some provinces here in Canada. The BC Children’s clinic is currently using it in the treatment of children in a study. Also there is the 106 study of its effects on depression , anxiety and cognitive functioning. 

in 2012 Canadian PKU and Allied Disorders put together a summery of the coverage in Canada. Nicole Pallone has graciously shared that list with me and it as follows: ( This list does not include KUVAN Or LNAA therapy. ) 

 

British Columbia :

Any formula recommended by clinic dietician is covered for anyone with valid Provincial
Health Care; shipping is covered for patients not located in Lower Mainland. No low
protein speciality food coverage. Product available from the Special Product Distribution
Center (located within BC Children’s hospital). $40 monthly stipend for low protein foods available to those on welfare.

 

Alberta:

Formula and variety of speciality foods are covered for anyone with valid Provincial
Health Care, shipping is not covered. Items are stocked within hospital. Cambrooke
Foods products are available to patients, orders placed through clinic and shipped to
door. Currently, “new” CBF items are not covered.

 

Saskatchewan:

Formula and approved foods are covered for ALL patients with valid Provincial Health
Care. Patients order formula directly from Speciality Food Shop and low protein foods
from National Food Distribution. Shipping is covered for all orders. Adult patients are
referred to AB or MB for follow-up care, although still receive formula and food from SK.

Manitoba :

Formula is covered to anyone with valid Provincial Health Care, shipping covered to
those not living in clinic area. Patients are responsible for ordering foods directly from
manufacturer or 3rd party; clinic does not stock/order foods. Allowance is provided by
Children’s Special Services for speciality foods. (up to $180/month for ages 1-12 years
and up to $250/month for ages 12-18 years) No allowance for adults (18+ years of age)

 

Quebec :

Formula and variety of speciality foods are covered for anyone with valid Provincial
Health Care; shipping is covered for those not able to pick up from CLSC clinics, located
throughout Quebec, orders are processed at time of patient request to National Foods.
A $1500 annual allowance to order Cambrooke Foods. Product is delivered to CLSCs and
patients are required to pick up same day.

 

Ontario:

Formula is covered for anyone with valid Provincial Health Care. Many low protein
products are covered (as approved by the Special Advisory Committee), and available
through the Speciality Food Shop, http://www.specialtyfoodshop.com. Speciality Food shop is
also available to non-Ontario patients with a metabolic disorder. Shipping is free within
Ontario – Out-of-Province & express shipping charges apply.

 

New Brunswick :

Formula and variety of speciality foods are covered for anyone with valid Provincial 

Health Care, shipping is covered. Speciality food coverage is limited to staple items only
(bread mixes, flour, pastas) and shipping is covered.

 

Nova Scotia:

Formula is covered for anyone with valid Provincial Health Care, local patients are
required to pick up and for out of area patients, shipping is covered. Staple items are
available (pasta, baking mixes, cracker toasts, rusks) Patients can order other products
from National Distribution through clinic, but are responsible for charges.

 

Newfoundland
and Labrador:

Formula is covered for anyone with valid Provincial Health Care up to age 18 years,
shipping is covered. Only 2 formulas have been approved for coverage (Phenylfree &
Phenylade). Staple items (pasta, bread mixes, pizza shells, Ener-G cheese) are available
to patients up to 18 years of age and shipping is covered.

 

Prince Edward
Island:

There are no PKU clinics in province, but patients are seen by regular dieticians and
family doctors; clinic visits in Nova Scotia. Formula is covered for anyone with valid
Provincial Health Care up to age 18 years. There is no specialty food coverage, patients
are able to order speciality foods from Nova Scotia clinic but are responsible for all
charges.

 

As you can see we had alot to do to obtain universal standards in Canada. It is my dream to see coverage for all treatments across Canada. So we are fighting. One province at a time. 

 

 

 

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Managing the diet, That's my PKU life

Dental Hygiene and PKU

Posted on by Amanda Horner

Today was my first dental appointment in over 3 years. So I thought with the current posts on the facebook group regarding Dental care that I would share my experiences.

I must confess, as gross and as bad as it is, I do not brush my teeth very often. Mostly when I remember , which sometimes can be weeks. Believe me its not Like i want to go that long. Its that it hurts so much. I know how bad it is and how many germs there are. But for me, My gums swell and bleed so much and I have very sensitive teeth.  Nothing helps not even sensadyne.

I have pretty much always had this problem. When I was a kid my mom use to give my fluoride drops and I never had any cavities.  We eventually stopped when they started to say how bad fluoride is for you. Though my mom believes that because of it , That’s why I didn’t have cavities.

Though my teeth are heavily stained and the enamel is wearing away. They are so sensitive it stings down to the roots and the nerves.  I have always had gingivitis.  So I was apprehensive for my new patient appointment today. The reason why I have not been in so long is because I had not had extended medical benefits since I was only working casually after I graduated from college.

So today was my new patient appointment since we moved from Victoria.  The appointment was 1.5 hours long but they did not do any cleaning or work this time. Today was ex-rays. tests and all this new age technology I have never seen before for screening and just a really good look at what’s going on. This clinic is so advanced for what I am use to.

I just dreaded them telling me I have cavities. I had night mares that Id have more than one to. So that was my big concern. I was worried also about being scolded for my lack of diligence with my oral care routines. However they where so nice!! They totally understood and we worked on a plan to help me. With all these new procedures available now, the dentist was confident it would get better.

I learnt alot today. Like where my teeth are calcified together is a very common problem area for all people not just because of PKU. When you sleep your tongue pushes against the back of your teeth , specially all the saliva glands. So all the calcium, minerals, chemicals and everything you eat that day sit back there.  ( I guess that’s why the best time to brush your teeth is when you wake up!)

I also learnt my reaccuring night mares of all my teeth crumbling and falling out in my mouth while im talking is because I clench my teeth when I sleep. I find that I clench my teeth and tense my jaw alot , even when I don’t no I am doing it. I have just been becoming more aware of that. They have a guard that’s soft and goes on the bottom teeth I could wear at night to prevent that.

I also learnt that there is no way I could clean all the tartar and build up that’s on my teeth on my own at  home at this point. So I defiantly need some help. However I am not hopeless and not past the point of no return.

She took lots of ex-rays, my wisdom teeth are in and all fine.  They don’t bug me either so I do not need them removed. I was scanned with ultra light rays for oral cancer and inflammation. I do not have oral cancer ( thank god! ) I do of course as we knew have inflammation. Then she used this new tool that vibrates and sends signals into your teeth and scans for week spots, or possibly the start of cavities. Mine was beeping a lot! I could feel my heart sink and a little panic arise. She told me not to worry, they can fill these “baby cavities ” with a lazer now!! Who know??

After that scan the dentist came in to go over the results. I have to go back next week for 2 cleaning and he highly recommends that I have some freezing done since I am so highly sensitive. Also He can lazer the nerves in particularly sensitive teeth so I don’t feel that pain any more.  We talked about different options and set up a plan to come in every 3 months for cleaning and scaling until we get the health of my teeth back up.  He also has some new products for after to maintain them once they are healthy. But they will not work until my teeth and  gums are better.

They both explained to me what gum disease is and how it creates pockets under and around your teeth, the inflammation pulls the gums away from your teeth, it takes many years and then even more before its very bad and past the point of no return or when your teeth start becoming loose. Luckily, I am not any where close to that. I don’t have any pocketing yet. Just sever painful swelling.

and then came the news I was waiting for. I had NO cavities!! NOT A ONE!! my record stands! 27 at the end of the month and no cavities. what a relief! I was honestly expecting some and hoping not though .

So needless to say I was very happy when I left. They gave me some new sensadyne tooth paste that just came out a few days ago that is suppose to repair enamel and a prescription for some mouth wash that restores the PH. I can find it at natures fare or any health food stores. I am going to go pick some up friday.

All in all, I have learnt my lesson and am going to do my best to get back on track and looking after my oral health care! Its going to be alot of work over the next year but It will be worth it.

My smile is one of my biggest self esteem problems. I really hate to show my teeth or smile with my teeth. I clench them alot. I am going to make it my goal to take better care of them. I certainly do not want to loose them!

So if you can learn anything from me, its those regular check ups. Also drink your formula with a straw. I was taught this when I was a youth, it helps get the formula further back in the mouth past the teeth so its not being coated with the formula. Brush at least twice a day, don’t wait so long between check ups, and maybe try the PH balancing mouth wash. The dentist told me it will help with the acid and sugars in my diet and protect my teeth.

Also , in younger children use the fluoride drops. Don’t let others scare you or the  media. It really does protect your teeth, in those small amounts they are not harmful. Its in higher does it becomes in effective for mouth care and harmful to the body. I really think its the reason why I have no cavities and so does the dental hygensit from today.  That’s what they sometimes give you a fluoride mouth wash or those trays at the dentist and then you cant eat for 30 minutes after them.

I know now that I have to make an effort to remembering to brush my teeth every day, so for this week my goal will be to set my alarm before bed to brush and after breakfast too!

I am looking forward to my next appointment next week to get started on this journey back to good strong healthy teeth!

 

 

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