Author: Hannah Maxwell-Smyth

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

Now we are in the modern smartphone age, we have all kinds of gadgets right at our fingertips that we can utilise, not only to remind us to take our supplements but also help to take them.

For my tablets I often use alarms on my phone, at work on my computer or on my smart watch. I love the smart watch alarms as with a vibration on your wrist it’s a lot more discrete and less intrusive in everyday life. I swap between using these alarms and not using them all the time. Life changes and if something isn’t working for you anymore don’t force yourself to carry on with it, try something new! There are also different medication counters you can find on amazon, lots of apps or all sorts to keep on track. Just keep trying until you find something that works with your life and routine.

To help take supplements if your drinks are always too lumpy and you’re getting sick of constantly shaking, what I used was a smoothie maker like a Nutribullet. I would put the powder in the drink container, stick the lid on with the blending blades and give it 5 second blast. It was so good to know 100% there would have been no lumps left! What’s also awesome about the Nutribullet is the container used to mix, doubles up as the drink container rather than a blender where you blend then pour into a glass. So, once it’s been mixed all you have to do is take of the lid and stick a straw in, so it saves a lot of washing up.

However, if you’re still struggling with the supplement, it’s always worth seeing what other supplements that are out there, as when you are on the same one for years, it’s easy to forget that there are new PKU products coming out all the time.

I just emailed my dietician asking for as many samples of supplements as I could have to try and over the next few weeks, they all came flooding in. It’s especially great fun to try with friends that don’t have PKU, so they can see all the different options and how interesting some of the different flavours are!

Whenever I tried new supplements, I always had these two questions in my head:

1. Does it taste nicer than my previous supplement?
2. Does it make my life easier than my previous supplement?

For example, some of the powder alternatives have no flavour, meaning they can be used with smoothies or food which makes the taste a lot easier but then I couldn’t see how having to take all the ingredients plus a smoothie maker would be practical for my days out, camping, so it wouldn’t make my life easier. Or if it was a pre-made drink, they’d of course make life so much easier as they are ready to go but the flavour was awful meaning I couldn’t drink a whole carton of it, so that would also be a no.

I know the big thing dieticians are trying to promote is mixing and matching supplements. Maybe try have tablets for the day outs and smoothies for your workdays or weekends in when you need something filling, pouches for travelling etc. I know sometimes I still have powder drinks for when I’ve been to the gym as a literal protein drink to fill me up and help my body recover. Like the different devices and gadgets, if you don’t like something don’t be scared to change it up every now and then, or if having issues with your GP or Pharmacy, your dietician will fully support you.

In conclusion, I always try new things, new gadgets, and new ways to help me take my supplements.  Some of them really work and some of them are just a bit of fun but aren’t practical in the long run – using your favourite song as an alarm really soon makes you really sick of that song! Never be scared to try new things as you never know when the next new thing will be the one that makes all the difference and will make life a little bit easier. Also, if you try a new routine recommended by someone but you find it just isn’t working, it’s okay to just drop it and move on to the next thing! Not everything will work for you and that’s okay.

The more you listen and get in tune with your body, the easier it becomes for your brain to see supplements as the solution to a problem rather than an issue. Listening to your body not only helps with supplements but also with your mental health.

Sometimes I have moments where everything can feel too much, this diet can just be too much and too overwhelming, but I know being on diet is always the best for me. On those days where I really feel unmotivated and tired, it really is amazing how much just remembering to eat, to have a drink or to get out the house for a bit can really help and the more times I ask myself “what can I do about this?” the quicker my brain will automatically respond with “take your supplement Clair!”

*Please note products should be used under strict medical supervision

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

Our supplements are the things that give us the energy and ability to live our best life. They are also our literal food, just one 20g supplement is the equivalent of 4 large eggs or one steak meal! Supplements provide us with the essential amino acids to be able to grow, thrive and keeps our levels (somewhat) in check. Our parents are told this from our birth, and we are told this from as young as we can comprehend it. These supplements are a part of our lives, just as much as brushing our teeth or sleeping is, so why oh why are they so difficult to take and why is it so easy to forget to have them?!

For a while that answer was an easy one, they were (for me) just simply terrible! The flavour, smell and texture were just awful. They were difficult to make and awkward to carry around. Back in the days of Maximum when I was little, my parents had to carry around a tub of powder with a measured scoop, count out each scoop and then shake it with water. The amino acid powder would never dissolve enough so there were always horrific lumps. The flavour of the drink was so strong that by the time they watered it down enough for me to stomach it, I’d easily be drinking a litre of water per supplement, which really messed with my appetite.

Happily, for parents and patients alike, there have been many innovations in supplements since then. We now have a huge range to choose from, there are so many different brands, flavours and styles. A huge range of flavours away from the classic orange or blackcurrant, you can put them with fruit to make smoothies, and you can even put it in your food. And of course, if you want to avoid flavour and faff of liquids altogether you can have the PKU EASY Microtabs!

But despite this, it’s still feels like taking supplements can be a lot of work, especially as an adult PKU when you’re trying so hard to have a healthy/work life balance, as well as managing a diet and trying to fit the multiple amounts of drinks/powder/tablets that needs to be taken every day. It can be really hard to get routines in place and get the balances right, and thankfully I’m finally getting somewhere with making sure I get all my supplements in me. With all my experience so far, I thought I’d write about a few things I’ve noticed that have helped me, in hopes that it will help others.

Overcoming the mental hurdles

Sometimes the biggest battle I face with having supplements is the battle that takes place in my mind. With PKU, there are no doubt wonderful, exciting moments, but it can also be extremely hard. Even though food can look quite normal now thanks to advancements in medical food and vegan products, for me it felt like my supplements were the one thing that always made me stick out in a public place, social situation or at a meal. They can be a reminder of how different I truly am.

When I was younger, I didn’t want to admit I was different, I just wanted to ignore my diet, ignore taking my supplements, maybe with the hope that ignoring it would make it go away? But of course, it never did. Ignoring it just made me so much worse. Getting back into my diet I saw the physical and mental difference it had on me – it was a such a positive change; I knew being on diet was the best possible thing for me.

However, the supplement was still a challenge to take. It still for me served as that reminder of how different I am and how hard this diet was. This would mean that every supplement I had came with an emotional brick wall I had to tear down every time.

In the end I learned what I now realise is called ‘The Grey Rock Technique.’ I didn’t let myself put any emotions on whenever I had my supplement, I would just take it as if I was doing any other routine or chore, washing up, brushing my teeth, hoovering, just get it over and done with as quickly as possible, not allowing it to overtake my mind.

I actually learnt this from watching PKU kids at a Kent meet up, the kids just would sit there and down their drinks in one! I was so shocked knowing how long it took me, a proper ‘adult’, to take them! But that was definitely the trick, just forcing myself to sit down and take it as quickly as I could, not letting my brain have any time to think in between each mouthful. Then by the time I knew it the drink was finished! This really helped push me in getting the supplements down me. The problem however wasn’t just about getting them down me, it was also remembering to have the things amongst a busy life!

Listening to my body is something I’ve recently discovered. This week I had a day off, just to relax and play Xbox. I was sitting there thinking “gosh I’m hungry” but I just had breakfast and so I wasn’t really in the mood to eat, and then I thought to myself have I taken my supplement? I realised it had been hours since my last supplement. It’s also the same for other strong feelings such as when I’m feeling fidgety, low energy or tired for no apparent reason. I go through a check list in my head, when did I last have my supplement, when did I last drink water, when did I last eat? (If I want to be extra mindful, I also ask myself when did last go outside as working from home means I can be stuck inside for longer than I realise!)

Why I do this is so I connect having my supplement to the physical world. As said before the problem with PKU diet is that it is hard to notice the physical symptoms. We don’t instantly faint, throw up, get hives or anything if we don’t take our supplement.

So, I try to listen to my body in the normal everyday by going through that checklist. It’s also helpful for general mental checks, for example, why am I feeling tired, emotional, overwhelmed etc.? When did I last eat, drink, what was sleep like, when did I last go for a walk? It’s a very helpful tool to use to find the root of issues rather than relying on those emotions that can be confusing!

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

I’ve talked before about the amazing journey I have been on with low protein food since I was little. There are now so many variations of foods, companies and a food option for every meal from dinner to pudding, to snacks and breakfast.

Another thing that has come a long way, which I briefly mentioned, is vegan food. The idea that I could one day have cheese, was just not something that I could of imagined when I was little. Nevertheless, thanks to the vegan/plant-based movement, so many PKU friendly vegan options have come out just in the last 10 years!

I remember the first time I found coconut milk cheese in the small shelf that had free from food (now there’s whole aisles of free from products!) and it blew my mind that it was something I could buy in the supermarket that was completely free of protein! Okay the cheese was very dry, plastic and far too sticky when it melted but it was definitely a start.

I also spoke in my low protein food blog about how prescription foods add bulk, fill you up and are easy to cook with vegan products such as coconut milk cheese or vegetables like jackfruit that can be cooked to a similar texture like meat. These products just add that spark of flavour, taste and essential fats that are needed, not only make food more interesting, but also keep me fuller for longer. The great thing is as there are so many people making the shift to being vegan, that a lot of main chain restaurants are now having to offer vegan options, with some of them now offering a vegan cheese option as standard!

Here are some of my favourite products, tried and tested. I love these all so much, they made a huge difference in my quality of food and life, and they’ve all come out so quickly. I don’t want anyone to miss out, so that is why I thought I would write this blog!

Note: Please double check all ingredients/ values before consuming just in case there are any changes in ingredients or recipes! 

Puddings

• Koko Coconut Milk Plain Yoghurt
  • Found in Sainsburys, Asda, Myvegansupermarket.com
  • 160g = 1 protein exchange (which believe me, is a LOT of yoghurt!)
  • Perfect for a big breakfast option where you can add fruits, syrups, and cereal.

• Koko Yoghurts
  • Used to be available in most supermarkets but now can sometimes be found in Morrisons or on thevegankind.com vegan online supermarket.
  • Available in Strawberry, Raspberry or Peach & Passionfruit – all 0.6g exchange per one pot

• Vegan magnum (any flavour)
  • Can be bought anywhere!
  • 2 exchange each

• Swedish Glace Non-Diary Frozen Dessert
  • Can be found in most supermarkets
  • A RIDICULOUSLY good ice cream alternative
  • Vanilla is 1 exchange per 100g!
  • Raspberry Soy is 0.9g exchange per 100g!
  • A lot of bang for your buck

• The Coconut Collaborative Little Choc Pots
  • Found in all supermarkets
  • A very indulgent chocolatey pudding (indulgent is not a word we get to use often when it comes to PKU friendly food!)
  • 1 exchange per pot
  • Pots look tiny but believe me, it’s so rich one pot is enough!

Cheese/Dairy

• Tesco Free From Coconut Oil Alternative To Grated Mozzarella Found in tesco
  • Completely free of protein
  • Melts perfectly for pizza, also works great sprinkled on top of pasta

• Violife Original Soft Cheese Dairy Alternative 200G
  • Found in majority supermarkets and in small convenience stores
  • Also free in protein
  • Works great as a dip with low protein snacks or veg, pasta sauce, a topping on jacket potato or spread on bread or toast

• Violife Vegan Greek White Block
  • Majority of Supermarkets
  • Free of protein
  • Great to use in salads, on pizza or any other kind of toppings.

• Violife Vegan Epic Mature Cheddar Flavoured Block
  • Found everywhere!
  • PERFECT FOR MELTING, whether it’s pizza, cheese toasties or for PKU friendly cheesy chips!
  • NOT free – 77g = 1 protein exchange (however most of the time I tend to use around a half a gram)

• Applewood Vegan Slices
  • Found in Sainsburys
  • Great for sandwiches – a lovely smokey flavour
  • Not free – 67g = 1 protein exchange (however one slice barely weighs anything just don’t go too crazy!)

• Babybel Plant-Based Vegan Snacks
  • Only found in Sainsburys and ASDA (so far!)
  • Free of protein
  • Great for lunchbox snacks, also works great melted on pizza (I’ve not tried it yet, but I would love to try and fry it with PKU breadcrumbs)

• MozzaRisella – Vegan Mozzarella – MozzaRisella Classic
  • Only found on thevegankind online supermarket
  • So good for a classic caprese salad with big salad tomatoes
  • 7 exchanges per 100g

• KOKO Milk long life milk (long life is the important part)
  • Can be found in majority of supermarkets, even in small convenience stores!
  • 100ml = 0.2 exchange
  • Works great with coffee without leaving any after taste (which I find the oat and almond milks tend to do)
  • (You can have the standard KOKO milk, it’s a slightly higher exchange about at 0.7 exchange per 100ml)

• Coconut Collaborative Crème Fresh
  • Delicious to use for a sour cream dip with guacamole or to make ‘cream of’ soup
  • 100g is 0.9 exchanges

 

Savoury

• Jackfruit
  • Can be bought canned at any supermarket, great for curries or a sticky BBQ meal
  • Free from protein

• Schar Gluten Free Pretzels
  • Purchased anywhere
  • One bag is ½ an exchange of protein
  • Great packed lunch snack

• Bare Naked Noodles, original (PINK PACKET)
  • Purchased anywhere
  • Stick straight into the wok noodles, completely free of protein!
  • WARNING – There is also a high protein version of this which is red, the low protein packet is pink, please check before purchasing!

• Lungkow Vermicelli
  • Sainsbury’s (so far)
  • A brand new one in the PKU world, these are made from Mung Beans
  • 5g per 100g & 1 nest of noodles = 50g, Sainsburys did confirm that means one nest is less than half a gram of protein!
  • Stick into a pan of boiling water, cook for 3 minutes and add sesame oil (also free!) for a super quick meal

Vegan products out and about (please check all websites)

• Starbucks
  • Ask for the almond milk with any drink, for some reason their versions of almond milk are lower in protein than the coconut milk. With amount of coffee and sugar you really can’t taste the difference.
  • A flat white for example with skimmed or semi-skimmed milk is 6.9 exchanges but with almond milk it’s only 1.8 exchanges

• Pizza Hut
  • They now do a vegan veggie pizza with violife cheese on top and stuffed crust!
  • I contacted Pizza Hut for the protein amount, these are high but for a one-off treat for a birthday, it sure is delicious!
    • Individual Thin – protein (g) per pizza – 25.2g (6 slices)
    • Vegan Stuffed Crust – protein (g) per pizza – 8g (6 slices)
    • Gluten Free – protein (g) per pizza – 9.6g (6 slices)

• Frankie & Benny’s
  • Their Jackfruit Bbq wings with vegan mayo are to die for and it makes me sad that they only serve 3.
  • I’ve tried to contact them directly and searched the internet but unfortunately, I cannot find the protein value of this, I will keep looking, keep an eye out on my twitter, which is where I will share this information if I find it!

• Wagamama
  • shu’s shiok jackfruit
  • 8 exchanges per bowl

• Yo Sushi!
  • Avocado Maki – 1.4ex
  • Cucumber Maki – 1.2ex
  • Pumpkin Katsu Curry – 3.4ex
  • Yasai Temaki Hand Roll – 2ex

Drinks

• It’s now always worth looking in your local corner shop for full fat versions of drinks, as a lot of drinks are being imported from America than the EU so you can find they haven’t been affected by sugar tax like old Dr Pepper, full fat coca colas and other drinks like Rubicon and Vimto. ALWAYS check the labels first. The majority of Supermarket own versions of drinks also are aspartame free, cheaper and the same taste so it’s also worth looking for off brand drinks.

 

It’s such an exciting time with more and more products coming out, however it’s important to be aware that not everything that is vegan/plant based is PKU friendly, as vegans still need protein in their diet, so always check labels and ingredients for high protein plant-based ingredients.

With everything being online it’s also really easy to check on websites and message company social media pages if you are ever not sure of the protein values. Also, I always make sure to keep an eye out on the social media PKU community, as there’s always people sharing their favourite Supermarket finds!

As I said at the beginning, these products are not just about the excitement of cheese on pizza but also how it can make us feel normal, how it can elevate our bland low protein meals into something creamy and delicious. We can have things that are indulgent, and chocolate covered for pudding. That our packed lunches no longer look so strange but almost normal with babybels, Pretzels, salads with feta on top and having the classic weekend snack of lovely cheese toasties.

These products would have never become available just for the PKU community, or other diet related conditions due to them usually being so rare, so thank you vegans – without you we would not have a new wide range of products to taste!

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

I’ve really enjoyed hearing from other points of view when it comes to PKU, whether that’s from close friends or my family. It’s amazing how we all have the same diagnosis, yet life can be so different, as well as so similar – whether it’s our exchange tolerance, our experiences with friends and workplaces or even just our favourite foods.

I love the idea of hearing as many PKU stories as possible, and to hear from people I don’t know as well as friends. So, I asked Galen Medical Nutrition to send out a message on the social media to see who would want to talk with me about their PKU story.

Kevin answered! He came to me saying he was ‘on diet as a kid, untreated for 35 years + and started taking a medication for PKU 2 years ago. Not only was I excited someone had even responded but I could see just in that sentence that there was a lot we could talk about. I also saw from his Twitter that he was from the United States of America, as I’ve always been fascinated to hear more about the PKU world from across the pond!

Please tell us a bit about yourself, where are you from, your age, current job, favourite hobby, favourite film/tv series? With your PKU tell us a bit about your diet, your current exchange allowance and what substitute/medication are you on?

My name is Kevin. I am in my early forties and I live and work in the state of Indiana in The USA. I don’t have a lot of time for hobbies lately, but I do enjoy going for a bike ride or a walk now and then when I can squeeze it in. I also don’t watch a lot of movies or TV, but I am a huge Monty Python fan and I love a good irreverent comedy film.

As far as my PKU goes, I am currently taking a medication and it is effective to about 80g of protein per day. My diet is pretty basic, though I still have to watch my protein intake, as 80g is not as much as it sounds like for a larger person like myself (I am 6’4”/ 193cm tall). Mostly chunks of meat must be kept small and I still incorporate a large amount of vegetables and fruit in my diet to keep my numbers down.

How do you find the treatment/management of PKU in the USA, what are the positives and what are the negatives?

On the one hand, I am grateful to have had such ready access to the medication. I had a blood draw to establish my levels, which were 20x the normal level (more on that later) and I was referred to a specialist and was on the medication within 4 months. The frustrating part is that since we don’t have socialised medicine as you do in the UK, I have to deal with my insurance, and the co-payment can be prohibitively expensive if I am not able to get assistance (upwards of 13k/year). It would be impossible to afford without insurance since the retail cost is about $250,000 per year.

Insurance nonsense aside, I am pleased with the accessibility of my specialist and dietary support team and the expertise they have to answer any questions I have about managing my PKU/ PHE levels. I meet with them every 6 months in Indianapolis (a 3 hour drive) for about a 30-minute appointment, but it is worth it to me.

Do you know many others with PKU in your state? Knowing how big America is, is it hard to get in contact with other people with PKU?

The only other person I know with PKU is my brother, who lives 600 miles away from me. I have never met another person with PKU since my family moved from Michigan to Illinois in 1987. We had a small group organized by the University of Michigan children’s hospital to connect families whose children had PKU, but I don’t remember much other than an odd get together. I am not really aware of any PKU groups near me, so it is a pretty isolated existence I lead.

You mentioned you were on diet as a child, how did your parents handle your PKU diet and the original diagnosis at birth?

As well as they could, I suppose. My mother managed our diet when we were young, making sure our exchanges were in order. It was very stressful for her; I do know that. I was let off the diet so young I don’t remember much at all.

You mentioned to me you went off diet for 35 years, what age did you go off diet and do you remember the reasons/events that caused you to go off diet?

I was taken off the diet at 5 years old by a doctor who claimed to be on the cutting edge of PKU treatment. Other, more conservative doctors would have held me on until 12, but I was going to be let off just before adolescence, regardless. I do remember them checking my levels regularly via blood cards at home and occasional trips to the hospital to do draws.

What was it that made you go back on diet? During that time did you think about your PKU diet at all or did you just put it at the back of your brain?

I only went back on a PKU diet after I got my levels tested and consulted my specialist in Indianapolis. He was the one who told me what the diet was like and really only used it as a precursor to going on medication to see if I could drop my levels some before starting. I remember cutting back to about 30g a day, which for me is virtually nothing. I never really was aware of the diet until then, because I was taken off so young and my parents never really talked about it much. I guess they thought it wasn’t an issue anymore, so why bother?

Did you feel any effects of being off diet for so long? And if so, what were they?

Oh, God. Where do I begin? Anxiety, lack of impulse control, insomnia, sudden violent outbursts of anger when stressed or overwhelmed, lack of attention/motivation, strong mood swings, executive function was compromised (decision making), lack of self-awareness in social settings (like Asperger’s) I was diagnosed with ADHD in high school and narcissistic and anti-social personality disorders when I was 30. Sometimes it was like my brain was a jumbled pile of puzzle pieces that wouldn’t fit together no matter how hard I tried.

You’ve said you’ve been on the medication for 2 years, is that what brought you back to the diet and if so, how did you find out about the medication?

My brother is married to a Nurse, and she was the one who prompted him to seek out treatment for his PKU. Seeing him do it eventually convinced me to seek treatment as well. It was really only through this and the consultation with the Specialist and the Registered Dietician that I became aware of any changes in diet or medication treatments that were possible to deal with my PKU.

How do you find being on medication, what difference has it made to your diet? What surprised you about being on it?

I can eat almost normally at this point. As I said, there is a threshold still for how much protein I can eat and still have my levels be okay. I am so happy to say that it has been an absolute game changer for me. Most of the symptoms I dealt with before are either lessened or nearly non-existent (they do pop up once in a while if my levels creep up)

However, one of the most difficult things for me has been adjusting to being able to function to my full capacity for the first time in basically ever. I mentioned one of the effects of not being treated at all was a compromising of my executive function and lack of impulse control. Part of my journey involved a history of self-medicating my brain with alcohol. When I would drink far too much, the relaxing of my inhibitions combined with my compromised decision-making abilities due to high PHE would result in some of the most egregious, hurtful acts towards those I loved. Specifically, it led to multiple infidelities and even a bit of legal trouble. The guilt and shame I have carried from these actions initially lessened when I resumed treatment and realized what was behind it all along.

However, decades of believing myself to be a wicked person who didn’t deserve to be loved took its toll. I am currently in counselling for this.

The medication has given me a new lease on reaching my potential, but there is work to be done to undo the psychological damage of 35+years of toxic PHE levels in my brain. The effects of being off diet may always be there, as it is possible (according to my specialist) that permanent damage has been done by so many years of toxic levels.

I see you’re quite new to Twitter and that you say in your bio that you’re on twitter specifically to engage with other PKU’s, how are you finding it? Is there anything that you feel the PKU community could be doing better on social media to support each other?

I have been delighted to connect with other PKU’s and realise how not alone I am in my journey. It surprises me there aren’t more Americans on the PKU twitterverse, but I will take what I can get, they are all delightful people.

As far as mutual support, it might be nice to have a forum somewhere to discuss issues with diet/medication or the general frustration of being PKU in a very non-PKU world. I don’t doubt it exists somewhere but publicizing it more would be nice for those of us not as familiar with social media or who don’t know how to reach out.

What do you think PKU’s from other countries could learn from each other? Do you think there is a better way we could support each other on an international level, not just with those within our own countries/communities?

I think the best way would be to openly share how each country deals with access to PKU treatment and resources so that others can glean ideas for how to lobby their governments for better access and control over their treatment. I see quite a bit about the UK, but not so much about Germany or the USA or anywhere else, really.

What do you hope for the future of PKU and with your own journey with your PKU diet?

Ultimately, I think I would love for rare diseases in general and PKU specifically to be given far more funding for treatment research and awareness training for society as a whole. There is too much stigma around rare disorders because people simply don’t know how to deal with someone who has such a restricted diet. It gets tiring having to explain my condition to virtually every person I deal with as to why I am not chowing down on another Bratwurst or hamburger.

Personally, I am hoping to transition to a less meat centered diet, maybe even vegan. I have found myself cherishing the PKU-friendly recipes on Twitter like they are dishes from my home culture. I have yet to find jackfruit in the USA (I may have to order it online, ugh) but I promise to get my hands on some and go nuts with the PKU friendly cooking!

Finally, what message of support or word of advice, regarding PKU would you give your younger self, if you could meet them now?

Your PKU is a lifelong journey. Take it seriously and keep doing the diet. Even though it will be difficult and frustrating, the effects of not following it will cause far more trauma. Learn to embrace how you are made and find strength in the journey.

 

I was so excited to speak to Kevin, that he volunteered himself and being from USA, it’s always interesting to hear how other countries work with PKU treatment!

It is however frustrating and upsetting to hear another story of someone going off diet at a young age, that there are whole generations of people who were let down by their doctors, even though there was less understanding of PKU and how it works back then. We now know it is definitely diet that is best for you and the thought of being taken off diet at 5 years old is just crazy now.

I know how hard it was for me to get back on even after a few years in teenager rebellion, so I imagine trying to get back after 30 years would be almost impossible. It’s another reason why new treatments and products coming out and innovating how we treat the diet is so important, so it’s not such a huge jump to go from “normal” life to diet life!

I agree with Kevin, the feeling of being back on diet is amazing! You feel so clear headed and like a completely different person, so it’s important to get as many people from the generation, that were told to go off diet, back on diet as soon as possible without all the pain of what the diet was.

Learning to “embrace how you are made” is definitely a huge thing for me as well, accepting that PKU is a part of your life means you stop trying to fight it, pretend or keep quiet, as I’ve said before, friends and family do want to help, so even I have to remember to reach out and to be gentle with myself, I am doing my best!

Thank you, Kevin, for your time and if you wish to share your story, please get in touch either with Galen directly or my own Twitter @Clairbear42.

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

Armed with the knowledge I could do bulk cooking MY way, I prepared to make my next portions of spaghetti. For Bolognese sauce rather than just half a courgette, which is what I usually used for one portion, I used a whole one. I also used two onions rather than one, a whole pepper rather than half, and so on until I had enough vegetables to make at least 4 portions of the meal, which I had made in smaller variations many times already.

The biggest thing that also helped with portion control was measuring the amount of low protein pasta and rice I was using. Rather than just chucking it in by eye as I normally would; I knew I would need 320g of rice to make four portions, as one portion of rice was 80g – which for some reason, never feels like enough for just one meal! As you’re making things in bulk, you don’t have the worry of making too much because when it comes to bulk cooking, it turns out you can never make too much, it means you make more meals!

Now that I had the basics of what to cook down, I had to figure out when it was best to cook. It seemed to be that I could find the motivation to bulk cook at least once a week. The initial thought of bulk cooking still overwhelmed me, but I found the trick to get myself going, was if I had a Sunday afternoon film on.

At the beginning of the film, I would force myself to put a big pan of water on the hob to boil, even if I had no idea at the time what I wanted to cook. It would mean that once the water was boiling and ready to have something chucked in it, I had found been inspired as to what I wanted to cook, so if I fancied a curry I would put rice in and once that was chosen, the rest of the process of cooking curry filling soon follows. Pausing the film at regular intervals to stir the pots, prepare, chop and fry vegetables and then serve when done (another tip – buy a BIG serving spoon!) it meant by the time the film was finished, I would have 4 or 5 meals ready to go in the freezer!

If I suddenly had the random urge to cook another load the following week, I wouldn’t stop myself from cooking, even if I already had food in the freezer, I just go with it. The bonus of this was that it would then give me variety, as I always make sure that I change what I cook week to week. So, if I had made curry last week, I would make spaghetti this one, and so on. At the rate I was eating and cooking meals, I never seemed to have more than 5 frozen meals at any one time. I wasn’t ever sure when I would next be motivated to cook, so I always make sure to strike when the iron is hot!

Before this, I honestly thought bulk cooking would only be for work lunches and when I was in a rush, but they have also been so useful for all sorts of other situations as well. Such as, a quick dinner before going on a night out, a hot meal for when you’re feeling poorly or just on the weekend when you really can’t be bothered to cook and you’re desperately trying to stop yourself from ordering take away! I’ve done lots of experiments since my initial tries, like adding grated vegan cheese before freezing (it beautifully melts all over the pasta when you then reheat it in the microwave!) and making batches soup to freeze in the winter.

The initial thought process to bulk cooking, the preparing and organisation can be an overwhelming thought, as it was for me, but experimenting is really important. Finding what works for you and your routine is the best way to get started, rather than trying to compare yourself to others or copy what they are doing. Then when you do get going, it’s so worth it. As having a backup on those days whenever the diet, or even the thought of cooking from scratch gets too much, has been so helpful. Even if I don’t use them every day, just knowing that in the freezer there are instant, protein free ready to go meals really releases the pressure of an already high-pressure diet and makes the process of bulk cooking totally worth it.

 

 

Hello everyone, my name is Clair Willcocks, I am 28 years old and I am Galen Medical Nutrition’s PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

Bulking cooking is often brought up by dieticians and other members of the PKU community as a great way to help manage our diet. The idea being that it makes multiple, microwavable low protein meals which saves the need for us to cook every meal from scratch. In theory, bulk cooking sounds great, but for me it has always seemed incredibly overwhelming. The thought of cooking all that food at once, whether there will be enough room in the freezer to store it and what if I cook too much? What if it goes to waste because I get bored of eating the same thing every day? What if I don’t make enough food so hours of cooking results in only 2 days of meals?

Before the most bulk cooking I ever did was when I would make far too much pasta for dinner (why is it so difficult to get a single portion of pasta right?!), so I would stick any leftovers in a Tupperware box in the fridge, hoping there would be enough for my lunch the next day. However, I didn’t really consider that to be bulk cooking, as I knew of people that would cook large PKU cottage pies, big pots of rice and curry or a slab of lasagne, filling their freezer completely full of meals. So, the question was how do I get myself to the next level of bulk cooking and what do I need to do that?

In a spur of the moment trip to B&M, I finally purchased some freezer pots, labels and decided, as I had seen on social media, I would cook a PKU lasagne, as I knew it was a meal that could make quite a few portions. So, I followed my normal recipe, I made a big pot of tomato and vegetable sauce and put it with the sheets to then put in the oven. When I filled my lasagne oven tray (an old bread tray which I never use) I realised that I had made far too much veg and tomato filling. I decided then that I would also cook a batch of spaghetti while the lasagne was in the oven because why not!

While that was all cooking, I went to clear out a drawer in my freezer and after throwing away month old packets of chips and hash browns, I was able to get one clear. When the food was all cooked; I laid out my pots, somewhat messily forked lasagne, and spaghetti into them, let them cool down and then stuck them in the freezer. Putting them in the freezer, I was nervous considering when do I use these frozen meals? Are they something I should save for only ‘rainy’ days when I’m running late, or I feel poorly? Or do I use them every day?

After successfully cooking and freezing my first bulk load of food, I woke up the next day and realised I actually fancied a meal of avocado toast for lunch! However, I did soon discover when the bulk cooked meals would come into play! It was when I woke up on a workday morning a few days later and I couldn’t even begin to think of what I wanted for lunch, never mind have the energy to cook something from scratch. Normally, I would get so overwhelmed with the thought of what to have for lunch, that I would only ever face eating a packet of crisps and a cup soup. It was on those days when the bulk cooked meals would come in handy, not just the obvious times when you slept past your alarm.

That was my first experiment in bulk cooking and even though I had both lasagna and spaghetti; I was surprised how much I preferred the spaghetti – the main reason being simply because it was easier to stir the spaghetti halfway through cooking, ensuring it had cooked all the way through. Whereas the sheets of lasagne prevented me doing that meaning even after 5 minutes in the microwave, it was still cold in the middle.

This was exactly what I needed to help me realise that for bulk cooking, I didn’t have to make big fancy meals, but just bigger versions of what I already knew.

Hello everyone, my name is Clair Willcocks, I am 27 years old and I am Galen Medical Nutrition’s new PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

Since life has pretty much gone back to normal when it comes to travelling, knowing how easy the PKU EASY microtabs have been on days out, I was really excited to put them through their paces when it comes to going away on long weekends, a week’s holiday and flying. With my previous substitutes going away anywhere was less than ideal.

Last year I was lucky enough to fly abroad to Belfast to meet the Galen sales team, and I was been able to go Tunbridge Wells with my mum for a long weekend of retail therapy! As I did in my previous blog, I want to compare my experiences of travelling before with my substitutes vs travelling now with the PKU EASY microtabs.

Long weekends are great fun but I always find them awkward to pack for, as I have to find the right size bag to put a weekends worth of clothes in and a big suitcase is silly just for a few days. However, if I’m on holiday in England I always have to pack for every eventuality of weather, as it doesn’t matter if it’s July or October, we could still get pouring rain or a heatwave! So not only do I pack for the required amount of days but always extra.

Of course, I then have the PKU element of going away – making sure I bring my prescription food incase I get hungry on our days out adventuring, so I have exchange free snacks. Then as well as fitting a weekends worth (and a bit more) of clothes, PKU snacks and treats, I of course have to make room for my supplements too.

When I was on the premade supplements this was always a nightmare as they were so bulky and made my bag so much heavier carrying around all that liquid. Also in the same principle as the clothes, I would always pack extra just in case something went wrong or I got stuck due to travelling issues, so it meant even more weight in my bag.

Another issue was that I was always paranoid one of the drinks would break, getting liquid all over my clothes, so I would keep them in a plastic bag but the fear was always there! When going camping I’d leave my bag of drinks in the car to save room in the tent, but it meant that in the summer the drinks would start getting warm throughout the day, which made them even more horrific to drink!

The powdered substitutes were a lot easier to pack as they were flatter, lighter and were less bulky, however, a weekend away still meant taking over 10 sachets of powder plus extras which would still take up precious room in my weekend bag. I also still had all the inconvenience of having to make it up while out and about, cleaning the shaker out and carrying around bottles of water to use to drink (and wash out the shaker if I was camping).

Going for a week away had all these problems but fivefold, as not only did I have to pack for a whole week’s worth of clothes, snacks and allow room for any souvenirs I may buy; but also a week’s worth of substitutes.

When it comes to flying its always an anxious time while my bag is being scanned through security as I can’t help but think they might start to ask questions about what this suspicious powder or fluid is I have so much of!

As travelling usually takes up the majority of a day, as well as having it in my suitcase, I also needed to have the substitute in my carry-on bag, so I always had my dietician’s letter with me to explain why I needed to take liquid and powder onto the plane. I’m very lucky I haven’t had any drama with airport security yet but I know people that have and it’s something I’m still anxious about every time I fly.

Now with PKU EASY Microtabs

Travelling for days or a week with the PKU EASY microtabs as my substitute is now so much easier. For me, one pot of tabs is two days worth of substitutes so for a small trip away I only need to take one pot and for a week I only need to take three pots. I still take spares just in case something goes wrong but the pots weigh barely anything and take up very little room. It’s what I’ve always wanted for going away, something discreet, light and not bulky to carry!

Airports are still a little nerve-wracking to go through but an interesting effect of having tablets is that people are more likely to take tablets more seriously as a medication rather than a drink pouch or powder. I’ve found this not only at airports, but also out and about at concerts, restaurants or even in the workplace. Even when I am pouring out large amounts of tablets and it can feel like I really stand out, people seem to better understand the concept of taking tablets as medication and just leave me to it. I don’t find myself having to explain what the tablets are actually for, not as much as I had to with my drinks. To be considered a valid form of medication, the tablets are enough.

As said previously, the PKU EASY Microtabs make it so much easier to take my supplement throughout the day as I travel, as all I need to take them is a bottle of water. Sometimes once I’ve got past security I can buy water in any newsagents, or even when I’m on the plane! However, trying to make room while on the plane to make and shake a powdered drink is certainly not so easy. With the premade drink, I’m always wary of the smell that comes with it, if it stays on my breath or if other people in seats near me can smell it, it’s not like I can crack open a window while at several thousand feet in the air!

Day to day usage as explained in my previous blog is just so much easier, as I just carry just one pot in my going ‘out out’ evening bag or in my back pack, with a bottle of water or any fluid. Then it can be taken whenever, wherever; a restaurant, on the beach, at a picnic bench on top of a hill, at the side of a path in the middle of the countryside with no drama or fuss meaning I can truly be in the moment, whether that is at a meal with my family or on an adventure, lost somewhere in the wilderness.

The biggest compliment of the tablets I have, was when I went away with mum for the weekend. She turned to me late in the afternoon and asked if I had my tablets that day (old habits die hard!) which I of course had been taking when we did get a spare moment, such as with a cup of coffee or at a meal, but even my ever-vigilant mum hadn’t even noticed me taking them, because they were just that quick and easy to take!

That’s why I love the PKU EASY Microtabs, they do exactly what our substitutes should do. Our substitutes are something that we have no choice over and they have to be taken every day, multiple times a day for our health, so they shouldn’t have a huge impact in our everyday lives or be a huge fuss because we’ve got better things to be doing like living our lives! They should be as natural and easy to fit into our routines and lives as brushing our teeth or having a morning tea or coffee and the PKU EASY microtabs do just that.

Hello everyone, my name is Clair Willcocks, I am 27 years old and I am Galen Medical Nutrition’s new PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.

One of the best things about the PKU EASY Microtabs has to be how easy they are to take out and about. I did talk about this briefly in my ‘Transfer to the Tablets’ blog but now with last year’s relaxation of the tougher lockdowns, I was finally able to put the tablets through their paces as I went out and about more, even going over overseas to visit Galen in Belfast! Travelling with substitutes was always something that was a real struggle before, so with this blog, I want to provide a direct comparison with what it was like with my previous substitutes compared to what it is like now with my Microtabs!

Days out – Before

Having a big day out is always exciting, but when you have PKU it also makes it a lot more complicated. If I’m going for a day out to London for example, as well as having to organise the train tickets, where I’m going to visit and where I’m going to eat like normal people, I also need to make sure I have my substitutes, double check restaurant menus, and organise what snacks I may need to bring, just in case there is no suitable restaurants around.

On the actual day itself, I would pack my bags with various PKU friendly foods such as prescription biscuits, vegan/gluten free snacks, fruit and crisps etc. I’d also need to pack my substitutes, which before were the GMP powder drinks. I would have had to make sure that I not only have my powder sachets but also my shaker and the water that I would use to make my drink up with. The annoying thing was that shaker always took up so much room in my bag and the water made my bag heavier, meaning I’d always have to carry around a bigger, potentially less practical, comfortable (or even worse, less stylish!) bag. It was the same when I was on the pre-made amino acid drinks, as they were also always so bulky and heavy, I always had to find a bag to fit around them.

I would always try and make sure I’d have my first drink before I left for the day so I had the energy I needed. However, in the rush to try and get everything ready, I would always somehow forget to actually drink my drink. This meant, in those last 10 minutes before I needed to go, I would have to make and force my drink down as quickly as possible; and believe me when I say, trying to drink 500ml of substitute in one hit is a lot of work! If I had just had breakfast it would make me feel so sick because of how filling my substitute was so because of this, the majority of the time I didn’t have breakfast, which of course isn’t ideal just before a big day out!

When I was out and about, and it was time to have my lunchtime drink, I couldn’t really stomach my drink with my lunch as it was so filling – otherwise it would fill me up and spoil my appetite before my meal. If I had it as well as my lunch, I would feel sick from being so full. I also always somehow managed to make a big mess, especially when I didn’t have my shaker or water with me because I didn’t want to carry them around. Instead, I would try to just buy a bottle of water in a shop, empty half of the water into a nearby plant and then pour the powder into the bottle.

However, attempting to get a sachet of powder into a hole the size of a 10p was incredibly messy, no matter how much I tried to open the packet in a funnel like way. Having to make my drink in front of people wasn’t something I was ever really too embarrassed about, as now protein powder drinks you make and shake are now a common thing, but having to do that in the middle of a café still wasn’t really ideal.

Because of how much of a fuss this all used to make (the carrying around of shakers, pouring the powder everywhere, finding enough water to make a decent drink and then finding somewhere to wash out the shaker for next time) I’m going to be honest and admit that on my big days out, I just wouldn’t bother to take my lunchtime drink with me. This of course was less than ideal as for a long day out it would mean that I would get very tired. In addition, if I got home late, I would not have the energy to make my evening drink, as I wanted to just relax or go to bed. So, I wouldn’t have my evening drink either; meaning on a big day out, I potentially would only ever have one drink, my morning one!

Days out – Now I’m on the PKU EASY Microtabs

Getting ready for a day out is now a lot easier, as rather than only giving myself 10 minutes to down 500ml of liquid in one go, with the microtabs, I’ve just been able to just knock back a capful of tablets while trying to get ready and everything packed. As they aren’t liquid, the tablets no longer fill me up as my previous substitute did, which means I have more room and time for a decent breakfast, something which is so important for a big day out or even just for my normal workday.

As I’m packing my bag with all the essentials, I have what I lovingly call my ‘old lady pill bag’ which I keep my PKU EASY Microtabs and the vitamin tablets in. The bag is the same size as a small make up bag and that is all I now need to pack for my substitutes.

I no longer have to carry a 500ml water bottle of water, exclusively to make my drink with. To take the tablets all I really need is a small amount of fluid. This means even if I don’t have water, I can take them with ANY liquid, whether that’s my coffee, Coca Cola or green tea (not that it tastes particularly nice, but it at least gets the job done!) Importantly, if I do want to carry water with me, it can be water that I can drink throughout the day to keep myself hydrated, it’s no longer exclusively for my substitute.

Out and about the best thing about the tablets is that they can be taken whenever I sit down. When I was thinking about this blog, I realised the main time I sit down on a day out is when I’ve stopped for lunch or a snack, so even though you’d think that would be the ideal time to take my substitute as I have the facilities and the space, I couldn’t as my drink just didn’t work with food.

It means I would have to wait for my lunch to go down before I could have it, which would usually be at an inconvenient time. I’d be trying to hunt for a good spot or space to make it, which meant I would be making it on a wobbly park bench or having to buy something just to be able to use the café’s facilities. Now it’s exactly the opposite, I can use my stop for food or a hot drink as time to take my tablets, without it being an issue to my food intake. This also importantly means I’m much more likely to remember to have them, as I think “oh I have stopped at a table, let my get my tablets out!”

One pot of Microtabs lasts just under 2 days for me, so I know I’ll always have enough for the day. I also have different pots for different places (one pot at home, one pot at work, one pot by my bed etc.) which makes them last even longer, so I always know I’ll have my substitute with me. My pill bag is small enough to go in any size bag I need or want to take out, even a tiny evening bag when I go out for drinks!

The Microtabs mean I can now finally work my substitutes around my life, rather than my life around the substitute, whether that’s being able to use a bag that matches my outfit rather than one that’s most practical, being able to be more discreet (and making less mess!) when having my substitutes, being able to eat and drink when I want to and just carrying around less weight. It importantly means I am having my substitutes when I should be, not missing any out or leaving them at home so I am being healthier with my PKU. They really have changed my life so that a fun day out can be just that!

Keep a look out for my next blog which will focus on holidays & flying with my new tablets!