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  • #8834
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    Anonymous

    I'm 18 and I have Classic PKU. I've been on the lo-pro diet my entire life, and my levels have always been good until I was about 15, give or take. Ever since then, I have eaten the specialty lo-pro foods, drank the formula, been very physically active, and had good grades. Despite all of this, though, my levels are never where I want them to be: they're usually between 7 and 14. Last year, I got tired of not having good levels and did something a bit stupid: I went a few months eating only one small low protein meal per day and drinking my formula. As a result, I was always tired and hungry, but my levels were about 3. I realize that that was taking it too far, but I just wanted to prove to myself that I could get my levels that low because I'm sure some day I'll get married and want to have a healthy baby. There is the problem, though. How can I have a healthy baby if I can hardly eat anything in an effort to get my levels low enough? I know I'm worrying about this too early, but I just would like to know what's going to happen. It's okay, though. God's gonna work it out just like He always has. I'm allowed 325 mg of phe and 5 scoops of PhenylAde Essential per day. Please reply if you have any suggestions. 

    #8835
    Avatar of Andrea
    _rea78
    Member

    Well I am no doctor….but I have a 2 and a half year old with classical PKU. I have had great success keeping her Phe levels in the desired range (2-6 mg/dL) with the help of her dietician at the metabolic clinic. First I have a question: do you regularly see a dietician or go to a metabolic clinic? If so what do they say about your levels? I am assuming you do as you know your blood levels. Just curious what their take on this is.

    My suggestions are….first, maybe your body cannot tolerate such a high Phe intake each day. 325 mg/Phe per day may be too high. Perhaps you need to choose lower-Phe foods and eat more of them. My daughter can only have 200 mg/Phe per day. She has a very low tolerance. I keep her levels between 1.5 and 4 this way. The only time it goes high is when she is sick. Have you and your doctor considered lowering your daily amount of Phe? Again I am not a doctor, dont know how much Phe YOU personally need to function as an adult  – this is just a thought and suggestion. If your doctor has said do not go below this limit (325) then by all means don't. Maybe you could post a sample menu of what you eat per day? Hmmm what else….I do know if you are not eating enough calories then your Phe levels could also go high as your body goes into ketosis…..again just a thought. Like I said it would help if you could post some sample menus. You shouldn't have to starve yourself to keep your Phe levels low. My daugher eats a large amount of food each day, and is quite satisfied. we are able to say in the 200 mg/phe per day with no problem.

    Looking forward to your response, hope that helps a little…

    #8836
    Avatar of Breanna
    BreaMarie91
    Member

    I have to agree that if your phe levels are regularly between 7 and 14 mg/dl while eating 325 mg of phe it could be that this is too much phe for your body. Talk to your doctor and/or dietitian about experimenting with your phe intake and seeing what happens if you lower your intake a little bit.

    It also might help to split your meals up into 3 low protein meals and a snack each day rather than consuming all of your phe in one meal. For example rather than eating 325 mg of phe once a day try eating three meals with approximentally 100 mg of phe per meal, and then have a low protein snack to make up for anymore phe left during the day.

    I'm only nineteen, have not been pregnant before, and do not plan to be pregnant until the distant future, but it's my understanding that the majority of your nutrients for yourself and your baby during pregnancy comes from your formula. Take a look at the label for your formula when you have the chance. It is packed with calories, vitamins, minerals, and amino acids (minus phe of course).

    If you haven't already sit down with your doctor or dietitian and see if they have any suggestions. I hope this helps.

    #8838
    Avatar of Cook4Love
    Cook4Love
    Member

    I would imagine that if you were only eating 1 meal a day that you are likely not getting enough calories (which can also effect your levels).  How much protein is in 5 scoops of your formula?  My daughter is 9 and has CPKU.  At one point we had a very difficult time getting her levels low.  We kept decreasing her phe intake, but the levels did not budge.  In the end, it was that she was not getting enough calories from food or protein from her drink.  We ended up increasing her medical drink (she is at 70 gm protein a day right now from her formula) and increasing calories (and phe) through food.  Do you keep diet records before going to the clinic?  If so, the dietician should be able to see if you are getting enough calories.  You can also get a full amino acid profile and that can tell the dietcian and doctor if you are getting enough or if your body is catabolic (breaking down muscle to get calories and protein). 

    If your tolerance is 325 mg, there are lots of resources now for good low protein recipes.  You should not spend your day hungry and miserable.  Cook for Love (my site) has lots of recipes and no fees, Cambrooke has tons for their products, and Amanda Cosbourn (a young lady from Canada with PKU) recently launched a website where people can post recipes. 

    Brenda
    http://www.cookforlove.org

    #8845

     I am an adult with PKU generally this year my phe levels have been on the higher side due to many stresses in my life. I have started the softball season and the training sessions are tough yet alone the game, my phe levels have been higher because of my activity levels. I am currently on 60g a day of the vitaflo coolers. At the moment I am feeling like I am on a roller coaster ride just wanting to get off at this point. My lowest phe level this year has been 500 micromoles and the highest has been over 1000 which was shortly after my father died just before christmas.

    I always have my formula never go without it. I am trying to keep my level consistant and would like to get them under 600 if possible. 700 is ok as I can function ok with this level. Brenda I really love you cookforlove website.

    #8847
    Avatar of
    Anonymous

    Thanks, everybody! What I was trying to say is that my levels were low when I used to eat one meal per day; that meal didn't count for all 325 mg: only about 100. I don't do that anymore, I aim for 325 per day, but my levels are high. This last week of college is crazy right now with exams and everything, but when I get a chance (maybe next week) I will post a typical diet record. Thank yall so much for your help and support!

    #8860
    Avatar of Patrick5678
    Patrick5678
    Participant

    Funny enough, I am actuallly having the same amount of phe each day as you- 325 which works out to be 6.5 exchanges of protein. I find that if you divide your protein throughout the day this helps keep your phe levels stable each day. For example I have around 75 for breaky then another 100 for lunch and round it off with 150 for an evening meal. Its also important to spread your formula out evenly throughout the day to keep levels stable. I have some tabs 3 times a day after meal times. You will also need more calories if you do a lot of exercise as phe levels rise but will have to watch the protein.

    #8867
    Avatar of lynsey
    Lynsey23
    Member

     ellow every1 im lynsey im 23 yrz old and i have PKU when i was little i use 2 b so gud on the low protine diet and then when i stated secondry school thats where everything went down hill 4 me i felt so shy and embarriest about ppl whatching me eat differant things 2 them at luntch time n sometimes 1 or 2 ppl wud say sumthing 2 me and it did hurt abit so i came off the diet and have been 4 bout 12-13 yrz now and i do reggret it coming off the diet cuz now i want 2 start a family is realy harder then wot i thourght and me and my partner has been2gether 4 8 yrz. {sorry about spelling i not a gud speller at all lol} 

    #8874
    Avatar of
    Anonymous

    That's good to know! I've always heard that exercise lowers phe levels. I suppose I should be stable in my diet by now, but in fact, I have found that there is quite a bit of fine-tuning involved in structuring my diet to fit every aspect of my life; I make adjustments pretty often. Does anyone else have this issue? Is everyone else pretty consistent with their diets?

    #8883
    Avatar of N.
    RJD2
    Member

    You should really ask your dietitian or whoever is responsible.

    Seems like 325mg of phe per day just seems to be too much right now.

    Maybe it changed as a growth spurt stopped?

    Did you become thinner?

    #8903
    Avatar of
    Anonymous

    Yeah… I did lose some weight. I'm pretty muscular,  and  I had some belly fat at the time, so I weighed about 130 lbs. before I started eating one meal per day (I was sixteen). Within a few months, I was weighing about 115. I gained the weight back when I went back to eating normally, but I never got the belly fat back…. go figure. 

    #8906
    Avatar of N.
    RJD2
    Member

    So since you're weight is the same as before but you got obviously more musclemass. Are your levels lower than the last time you weigthed 130lbs (before you only ate one meal per day)?

    #8907
    Avatar of
    Anonymous

    Yeah, they have been better since then, just like I said though: not exactly where I want them.

    #8909
    Avatar of N.
    RJD2
    Member

    I would say it's because of a growth spurt that you had the tolerance of 325mg phe and as the growth spurt stoped your levels did get higher (but this could be totally wrong, since I haven't heard of any other case where the phe tolerance decreased).

    Now you said you grow some muscles and you levels are slightly better. This could be because your body needs protein to build muscles and more muscles need more energy and protein than less muscles (that's why the best marathon runners are skinny). So obviously more muscles leads to more phe tolerance.

    You should always be aware that phe tolerance is a variable and it can change from time to time, especially if you are sportif.

    So better go and see your dietican sometime to check back what amount of phe you're allowed.

    And if your tolerance is set to a lower amount now you sadly have to fill your diet with even more lo-pro food.

    I feel sorry for you and hope you can manage it.

    #8914
    Avatar of
    Anonymous

    Answered Prayer! Thanks so much for all your help! Last week, I was very active and I tried my best to eat more lo-pro food, but I didn't for every meal. I made an extra special effort to drink every scoop of formula everyday. My dietitian called a few days ago and said my level for last week was a 6.9! I was thrilled! It's coming on down! I can't believe what a difference making sure I get all of my formula every day made! 

    Praise God!

    Thanks so much to everybody who has commented and helped me accomplish this!

    =D

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