Community Discussion Forum That’s PKU life! How do you keep your level down?

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #6655
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    Hey, it’s me again! I have classic PKU, so I am really sensitive to phe. My nutritionist wants me to keep my level between 2 and 6. My last level was 3.1, but that was accomplished by eating one low-protien meal a day,and nothing else, except my formula (chocolate PhenylAde). When I went for my annual check-up last week, my nutritionist said my level was awesome, but I need to eat more…(I had lost 11 pounds since my last visit)…I am currently on a diet consisting of 350mg of phe a day, which is subject to change if my next level is not low enough. Everything is so confusing! I know it is all about balance, because eating too much phe or even not enough phe can make your level go up! I am estimating that my next level will be about a seven, give or take…so I will probably have to be on lower phe per day starting next week… I need help… there is one person in the state that I sort of know who has PKU, but she is a few years younger than me and her diet seems easier to maintain,(she does not have classic PKU). If anybody has any comments or suggestions or just wants to leave a message, it would be greatly appreciated.

    Avatar of Breanna

    Hey Millie, for awhile I had the same problem you have. I’m allowed 300mg of phe. My dietitian always said to make sure you drink all your formula because if you don’t then your levels tend to be higher. I drink Phenylade chocolate too, and PKU express coolers and xphe maxamum juice boxes. I stopped drinking Phenylade a year ago so I could drink the coolers and juice boxes, but I have to drink Phenylade again because since I am in the study we have to add milk to my formula to get extra phe. It’s so I don’t get used to more phe incase they have to take it away.
    Anyway, make sure you try to spread your food out throughout the day. If your having a very low pro meal and then a very high meal your going to give yourself phe spikes where your level will shoot up and then shoot down, which isn’t good. I guess the only way I got my levels down was by really watching what I eat. nBre

    Avatar of Meaghan

    Hey Millie, I am 19 also with CPKU but I am only allowed 225mg a day, which is basically the equivalence of 5 grams of protein. It all has to do with moderation of “regular foods”, knowing the amount of protein in the foods you like, and eating lowpotein foods whether you like it or not. Skipping meals is also horrible in the long run because your body breaks down your muscle eventually, and muscle is…drumroll please… protein. I believe that if you stop thinking it is difficult and stop thinking you can’t make your count it will be helpful as well. So far I’m doing great on 225 so best of luck to you and I hope you can keep your levels down the healthy way! Meaghan 19 in college w/CPKU

    Avatar of Tracie

    Hi Everyone,
    I had a question for all of you.If you don’t mind? nMay i ask for an example of say like your breakfast intake?(Meal wise)
    If you don’t want to answer thats okay.
    I am just curious on different ideas for each meal of the day.
    I am borderline PKU,but i’m just getting tired of the same foods. nJust looking for fresh ideas!
    Thanks, nTracie-PKU

    Avatar of yvette

    Hi hope your all ok ? i find it very difficult to keep my levels down and its so annoying! i try so hard but just cant do. does any one have any tips that might help me would love to talk to other people with pku at the min i feel like im all on my own which i no im not looking forward to hear off any of u evee x

    Avatar of ashley

    hi i new to this site and i think its great!!
    I dont have PKU but my niece does so im trying to learn as much as i can about it!!
    how improtant is it keeping your levels down what does it do to you if you let it get high the reason i want to know is my siter in law her daughter was born with PKU 7 yrs ago so none of us had ever heard of it back then.. and when is was 4 yrs old the child services stepped in and took her lil girl from her cause they said cause her phe levels were staying to high and she never got her back so now the lil girl is 7 and still in the states custody..[/COLOR]


    hey i have classicla pku , and i find it harder to keep the phe 2-6 so i try to keep it under 20 which my dr and nutritionist say is a good area for me .
    hope this helps

    Avatar of r

    I’m on Kuvan. It’s an AMAZING medication that came out for people with PKU. It allows you to eat soo much more.
    I don’t have PKU that bad and I have 9 pills of Kuvan a day and now I can eat WHATEVER I want! Ask your doctor about it. Some people aren’t successful with Kuvan, which sucks.
    But most people get their protein intake raised and your level gets lower.
    I’ve been on it 1 year now and I eat chicken, turkey, bacon, basically all meats, and ANYTHING else I want!

    Avatar of Breanna

    It is wonderful to hear that you are responding so well to Kuvan! However, I think it is important to keep in mind that everyone responds differently to Kuvan and unfortunately some people do not respond at all.
    Like you, I have been on Kuvan for over a year. My phe tolerance has increased from 300 mg of phe to 1000 mg of phe. Although we have both clearly benefited from Kuvan, I still must remain on a low protein diet in order for my levels to stay in the safe range (2-6mg/dl). Unlike you I have only added a few new foods to my diet. Besides eating regular bread and tortillas I eat the same as I always have, except I do not have to be as strict with what I eat (ie when I go out to eat I have a few more options to chose from).
    I am not sure if you are still required to drink your formula, but I know that I and a few other people I know do still drink the metabolic formula even while taking Kuvan. I have decreased the amount of formula I need to take, just a little bit, because I am able to eat more natural protein, but I still have to drink it.
    While taking Kuvan, it is also very important to continue monitoring how much phe you are consuming each day. By doing this you will be able to insure that your phe levels stay consistently between 2 and 3 mg/dl like you mentioned in another thread. If you do not monitor how much phe you are eating your phe levels could bounce around. For example if you do not eat a lot of phe one day your level may drop below 2mg/dl, which is not safe. On the other hand if someone else who is on Kuvan does not monitor what they are eating they may eat too much and their phe level could get very high. By consistently eating the same amount of phe you are able to be sure that your phe levels are not going to be low one day and high the next. I hope I am making sense .
    Like I said, it is great to hear that Kuvan has given you so many more options. It is just important to remember that not everyone responds the same and many people I have spoken to who are taking Kuvan do still need to remain on a low protein diet (even if it is not as restrictive) to ensure their levels are where they need to be. Even with Kuvan high phe levels are dangerous!
    I just thought I would share my side of the story!
    Take care!

    Avatar of Gordon

    Just wondering your daily exprience with the diet and taking Kuvan. I take 15 tabs of Kuvan daily of a morning. Monday,Tues.,Wens, I write down every thing I put in my mouth and document the amount of phes in each food. When done, when I go to bed I should have eaten around 1250 phes. On Thurs.morning I take my blood and send it to the clinic at University of Kentucky along with my log of foods eaten three days prior. I usally hear back from my blood with an email from the diatician within 5-7 days.Even on Fri,Sat. and Sun. I keep track of ny phes on a piece of paper. I also drink the 20 PKU coolers from Vitiflo. I drink 3 of these a day.The only difficulty I am having is eating 1250 phes a day. I get so full. I am not in the habit of eating this much food. But I know it is important to eat this amount to find the cut off amount of phes my body can tolerate daily. Taking the Kuvan has been wonderful because it has allowed me to eat things I have never eaten but it has been alot more difficult than I thought it would be.What about you?Lets hear your experience.

    Avatar of Breanna

    Like I said I am allowed 1000 mg of phe now rather then 300 mg of phe. I sometimes have a hard time getting this much phe in because I eat like a little bird LOL! I have found it very helpful to buy dry non-fat milk. This way if at the end of the day I still need to eat 200 mg of phe or something like that I add the proper amount of dry non-fat milk into my formula.
    I drink Vitaflo 15 Coolers and chocolate Phenylade. How much each formula I drink varies from day to day. I just make sure I get in 30g of protein equivilance (usually one Cooler and 60g of Phenylade). I guess because you only drink the Coolers it might be a little hard for you to add dry milk/regular milk into your formula. I add the dry milk into the Phenylade and I barely taste it. Just a suggestion!
    Talk with your dietitian, maybe she could help. When I was concerned about whether or not I would be able to consume enough phe after my tolerance went up my dietitian said there is an amino acid mix that she could give me to add to my formula. It basically adds phe to your diet, but I do not know much about it.

    Avatar of Gordon

    Thanks for the advice Breanna.I will talk to the clinic and see what options I have.

    Avatar of r

    Breanna, nThat’s wonderful that Kuvan has helped you! Glad to hear it.
    I’m actually not on any formula, all I take is the Kuvan. I responded very well to it, I’m so thankful.
    I wish they’d come out with something for everyone to respond to because I know what it’s like not being able to eat what your friends are eating or not being able to have meat.
    Kuvan really changed my life and I hope it does the same for everyone else!
    Best wishes to everyone! n-Bianca

    Avatar of donna

    Hi I'm catcocoa I just started kuvan 2 days ago and when I did my blood it started as 11 and end 10 so it has not droped much so I hope this week the kuvan will start working

    Avatar of donna

    Hi everyone this is catcocoa. My last letter was saying that my protein blood level went down not much only 11 to 10 but this week I wanted to share with everyone that this week my protein blood level is a 4.2 and my dietitian sied that the kuvan is working for me. That was the first time that it was that low.

    Well I just wanted to let everyone know.

    Thank you.


Viewing 15 posts - 1 through 15 (of 18 total)
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