Видео

Hi There, My name is Mark, I was diagnosed with PKU in 1964 and was placed on the diet which was back then extremely new, so new that we had to get formula direct from Liverpool Children's Hospital, it wasn't even available on prescriptions. The current thinking back then was, as you said in this video was a diet from birth until mid-teens, I came off the diet in 1977 when I was 13. fast forward to last year and having read lots of information from the NSPKU online I too have made the decision to go back onto the diet, however I was eating a normal diet for 47 years, long before you were born. I am currently in the care of Dr. Godfrey Gillett at the Northern General Hospital in Sheffield. I am currently trialling all the new formulae which I must add are much better than when I was on the diet as a child, I am also awaiting samples of all the new low protein foods that are now available, there was nothing like that in the 70's. All the very beat for your PKU journey, and thank you for telling your story. KEEP WELL!

Aww dude I can relate to this to hard! My mum used to take my scales with me to family meals. Urghh! I’m 32 years of age - I’m from Scotland but I live in USA now. I just had my first healthy baby boy (no pku) and watching this takes me back. I’ve never been off diet but I haven’t always been the best at taking meds. I was super strict during pregnancy and I have never felt so good in my life and after birth I fell back into my bad habits of forgetting formula etc and my anxiety came back and low energy etc. it’s absolutely insane !

I have PKU. I’m not particularly off diet but I’m not the best at taking formula and holy hell it makes me feel sooooo crap when I forget.

Even just getting in a formula in the morning is great because it’s got the right proteins for PKU brains

Avocado toast on homemade LP bread! From my kiddo

My husband has PkU also. He was taken off diet at 16 in a trial and had been checked yearly. After marrying him I saw a decline over 10 years and after consulting with his medical specialist it was agreed to return to the diet. He has been left with various issues nothing serious but all the same causing issues for memory/coordination etc. They don’t take anyone off diet anymore as they are seeing adults returning to diet with similar issues. He’s now been back on diet for 3-4 years and currently on medication to help potentially increase his protein in take which he’s responding too. He was restricted too 9 exchanges per day beforehand

Me and both of my siblings have pku and we basically just eat the homestyle bagels lol❤

Am I the only one who gets upset when someone calls it's a disease

Where are you from? Were in Ohio

Our son 12 years old classic pku only one out of our 3 kids to have it. Don't like drinking anything they send us for him to try. What are your thoughts on meat? He always tells us Bacon smells great and steak. He's not allowed to have any meat as you already know. Thoughts on the shot they have out for pku?

I have pku too it’s hard I feel u

Can we’ve an update

Hello Pioneer! I have something to tell you that can be helpful to you. I also had a PKU, but It is got better now. When I take extra virgin olive oil and tomato, I felt my pku symptoms improved. I don't know why it is, but It really works. I hope you to try it, Have a nice day!(Too much olive oil can exacerbate inflammation, so it is recommended to consume it in moderation. For me, the effect of tomatoes was much greater. I recommend eating organic tomatoes whenever possible.)

So I just started this... I make a fritata with egg replacer. It not the greatest looking but goes well with what I pit with it. The recipe makes several and I can refrigerate extra. I place it on an English muffin with mayo, mustard, all my heart brand non dairy smoked gouda cheese slice, arugula leaves and roasted rep pepper slices. It is amazing and if you use low pro muffins it is relatively no protein :)

Thanks for the review ...

I find breakfast hard too. My current fave is french toast, using egg replaser with Sno pro and add vanilla or cinnamon. Maybe have a batch of low pro omelettes pre made. Or a smoothe. Low pro cereal is handy but get sick of it very quick.

I'm definitely a fan of GMP. My brother likes them to. I was going to switch to sphere but i didn't like that they are owned or affiliated with nestle who is a big polluter. I tried comparing sphere to nutricias GMP ultra. Honestly I found that they taste VERY similar, nutricias GMP was smoother and milkier while the sphere was slightly sweeter and for some reason a glittery sheen to it (turn off for me.) Both of these factors can be adjusted by adding more or less water. Also I think nutricias GMP had less calories per serving, which is big for me cause I put on weight fast. I would refrain from mixing it with hot water because it can cause the proteins to denature before your body can metabolize them. Thanks for this!

What is the pins things you are talking about ? I am curious as of whet you do with them ? How can I get the flavor mixes please let me know thanks 😊

My daughter is 8 she’s tried there’s before but she didn’t like them she uses pku explore now

I’d love to know the calorie variation. I used to take PKU express 20 sachets because they were the lowest but wonder how that compares now to the sphere. I’ve been off diet since having my children. Youngest is 4 so I’ve been out of “the game” a while. I’m thinking about returning inspired by these videos. But weight gain is always in my mind. With a PKU diet being quite carb heavy, I’d also love to see maybe some ‘what I eat in a day’ videos once your diet is underway to give ideas.

Must try all these again but I couldnt get used to them. I'm on lophlex 20, quite acidic but i mix it with 7up. (I'm sure thats not reccommended 🤣)

Just started on Sphere 20. Pro tip: if you use vanilla almond milk instead of water, it's actually pretty good. At least in red berry and vanilla, not sure about chocolate lol.

The unflavored is nice when mixed with your favorite sports drink, juice or even iced coffee. It allows for plenty of variety which is always appreciated by those of us with PKU.

I'm going to try these!!

I'm the brother mentioned below 🤣🤣🤣, yes I found the sphere is really nice with the vitaflo pro zero. Actually nice to drink unlike those from back in the day! 🤣

So brave drinking from a glass I have to put them in a sports bottle and a drink to wash it down with 😂 except I have pku air

Another great video! Just thought I would mention you can add vitaflos milk "pro zero" with the sphere 20, my brother adds milk instead of water to the chocolate flavour and he says it tastes like a milkshake. I take the sphere with only a few centremetres of water so it's like having a shot of it instead of a full drink. I find the longer you leave the sphere after its made the more bitter it gets. 😀

Nice job! Can't wait to see other products

I actually love the one I'm on currently but did order a sample of the sphere to try it out....I have to drink over 80 mg of protein so it would be at least 4 everyday for me .......have a great day!

Good morning🌞 yes it can be difficult on the go, I always get in one of my shakes (Glytactin RTD 14 Chocolate) before I leave and make a head a baggie of mixed melons, grapes & berries. Flavis.com has a fruit bar with strawberry that is handy and is easy to carry along.

My favorite breakfast is some frozen fruit, blended with my PKU Sphere Vanilla - it’s super filling from the sphere, tastes great and is easy to put in a cup and drink while I’m driving to class. If I’m out, or stop for lunch somewhere along the way I also will sometimes bring some packets of sphere with me, buy the premade smoothies you can find in stores and gas stations, drink a bit out of the bottle and add the sphere and shake it to mix it, just as a lazy version or if I’m not able to use the blender in the morning

Hi, I struggle with breakfast sometimes. However I get prescriptions from dial a chemist who deliver to my door. So there is mevalia bread which I use for toast sometimes and a pku friendly milk from them that can be used on cereal. I find it a hell of a lot harder as I am only on 5 and a half exchanges ita been the same my whole life so trying to use small amount for 2 meals a day is difficult

Hello friends. My 2-year-old son has PKU. What do you think, is it too early to give him Kuvan?

Hi I have a piece of toast ordinary bread not pku bread, and tea with coconut milk in place of diary to keep the protein down! I also enjoy a fruit smoothie after I've had pku sphere. Working from home these days does make breakfast easier for me! Good luck with your return to diet thanks for creating your channel!! Great to connect with fellow pku people

I can relate to so much of what you're talking about. Especially growing up with pku and getting through college. Thanks for this! I was also of diet for a while and have been thinking about sharing my story to but i haven't gotten around to it. Maybe we can collaborate? Shout out to the pku moms out there! You're all so strong and amazing!

Why did you choose to go back on your diet after so many years? And why did you go off your diet and did you notice any bad things by doing that? Thanks!

1,649 OK I'm in the US for you know what that is counted by? My levels are suppose to be between 2 and 10 I will talk to my dietitian also. I went back on diet also my first level after being on diet since 01/03/2021 was 11.7 I took the blood on 01/29 at that point I switched to a simplified diet and took it again 02/05 and it was 9.3 being off diet my levels were always 20 to mid 30's. I've been able to take all my formula everyday.....its the best one I've tried over the many years of development

I’m so glad that I wasn’t the only PKU kid that was embarrassed to show that I was. I also struggled in school with my supplements and i used to beg my mom not to make me do it at school. My mom was the best because she got it to where my school let me go to a private room during the day to do it, they’d remind me to do it as well.

Thanks for doing these videos Matthew, great idea. My baby niece has PKU. I’m curious to know how your family felt about you coming off the diet? Were they worried and / or supportive?

Hi Dom, thank you for your comment - but I can’t see it as it only appears in the notifications I get - it isn’t coming up in the comments page for some reason so I can’t see the full text?! Sorry please can you try sending again mate! 😊

Its cool to see other people with pku, ive never met another person with it and i myself am just trying to get back on as well

Hi I’m Rebecca, I’m a triplet and two of us have PKU out of the three of us. I’ve been on diet since I was a kid. And my parents and family help us out and supported us along the way. And they still do

My name is Kelly I also have pku and live in America, I am 22 years old and stopped my diet 2 years ago. I also notice the tremors you talk about and the broken speech. I'm thinking about going back on the diet and your videos are really motivational for me. Keep doing what your doing 💙 stay strong 💪

My husband went back on diet at age 32 after being off for 18 years. The hardest thing for him to this day is meat. His family were Very meat and potatoes. I don't dare have bacon in the house at all.

Thanks so much for sharing!

Just curious what you mean by stomach pains. What are they like? I have something similar and have PKU but never thought it could be a PKU symptom.

Hey! I live in Kansas and I have PKU. Started on the Palynziq injections August 2019. I’ve been completely off the diet since July 2020. I am so glad that I responded well to the injections. I hope that someday you are able to experience the same. I will continue to follow your journey!

Hi mate, ive got PKU and I came off at the age of 19, had many side effects after a while like yourself. I'm really looking forward to seeing your journey back on to the diet. Its the toughest thing I've ever had to do but one of the best. I feel totally different now days.

I am so glad you are doing this and sharing with the world! My son is almost 1 so it is hard for him to go off diet when I make (and count) all his food. It was a lot easier when he was just on the bottle but now he wants what we eat and it is so hard not to share! Please don't give up! You got this!

I am excited to see your reactions to the supplements/drinks. When I was trying to find a different shake there was A LOT I did not enjoy at all!!!!