What is a recommended amount of Phenylalanine I should limit my diet to on a daily basis?. I currently eat between 200mg and 600mg / day as far as I can calculate.
I’m not an adult but anyway…I’m allowed 300mg of Phe/day. But it’s different for everybody because I know some others my age who are at like 800 phes a day. You’d probably have to get a hold of your doctor or dietitian or something and see what they have to say. nBreanna
Brea is right. You need to talk to your doctor or dietician, as they need to be involved in letting you know what the best level of phe is for you. We could all tell you how much we eat, but everyone with PKU is different. Even those with the same mutations can respond differently to different phe levels. For instance, my dietician wants me on 30g of protein a day, I’m not sure how much phe that is, as I always have calculated in grams of protein, but I know it’s more than most can tolerate.
I think that’s around 1350 phes (but don’t quote me on this because I’m not 100% sure). I was just always told that 1g of protein equals about 45phes. nBreanna
1350 might well be right. I can never remember. I just know that my allowance is still way above what most PKUers get. Even though it’ll be an adjustment for me to go down to 30g of protein when I go back on the diet, I know it’s hardly worth complaining about, considering how little protein most PKUers can have.
Arkham, Hi my name is smorff and i am 36 yr old female with classic PKU .Just wanted to let you know of a new med for PKU it is called Lanaflex. I have a very hard time staying on diet and this med gives me alot more freedom with what FOOD I can eat.. I get to eat no more then 6oz. of meat on Monday ,Wed,Fri, I can have just about anything Pasta etc.
This new med you take 1 pkt.(1/4cup to 2oz. water) I like to take it with hi c orange drink but I use 1 cup not 2oz… nThis med protects your brain and keeps your body from asorbing the phenylalanine.. Just something for everyone to think about. This can only be taken by people over 18 (adult) ones who have trouble with staying on diet..
I love it!!!!!!! Lot’s of new stuff coming out at end of year.And working on enzyme replacement therapy ( hope I spelled all that right I’m sure you can make it out)
nGood Luck to all Smorff
Arkham, nWell I think no matter what a diet is a diet and it can be hard no matter how restricted you are. But yes, you are allowed alot more then most people with PKU, are you hyperphe or classical PKU? Me and my sister get 300 phes…20 exchanges and I think about 6g of protein? nBreanna
I was diagnosed as hyperphe. But, my experience doesn’t seem to be typical even for those with hyperphe. I haven’t heard of Lanaflex…and don’t see anything about it online. There’s a Zanaflex, but that’s a muscle relaxant, and I can’t see how that would be applicable to PKU.
hi My name is Leeanne, I have p.k.u. I just turned 18 and I got a full ride to college, So what about this pill?? How can I get it? Is it expensive?
Hi Loren1 I think it depends on how you’re affected with PKU, CPKU or hyperphe – I have CPKU and used to be allowed 500 mg a day. A friend of mine who’s hyperphe can eat around 1500 mg. But now I take the pheBLOCK pills and an allowed 1200 mg and 25g protein. But only one who can the make determination is the metabolic doc/nurse.
I take Phlexy-10 which is more of a convience than anything. I take 40 pills a day and a quarter of the formula I would have to take without them. to tell you the truth, I would not try a pill that allows me to eat meat. I wouldn’t trust it. Then again I have been told my entire life not to eat things like that (considering a single piece of meat can have upwards of 40 grams of protein and pasta 8 for a single serving).
I would say stick to the low diets. Im 18 i know its a pain in the butt to have to watch what you eat, but allowing more protein I think it would be harder since youd have to be more exact and careful.
I can have 245 mg a day by the way.
nMeaghan n18yr college student w/ CPKU
I agree with you. I know that they have the pills out there and all, but even if my dietitian offered it I would turn her down. I wouldn’t want to take something only to find out it doesn’t work fully or something. Back in the past they let kids go off diet only to find out it wasn’t working, I wouldn’t want that to happen to me…if that makes sense. Besides, alot of people told if when you want to get pregnant you have to get off the pills. I think that would be basically like trying to get pregnant after being off diet and I don’t think that would be easy.
Plus, I’m fine where I am so I’m just going to leave it. That and just the smell of some meats like turkey and bacon make me absolutely nauseas and I’m not joking! A few weeks ago at my grandpa’s retirement party I hate to stay outside the whole time they cooked the turkey because otherwise I would have thrown up. nBreanna n16 w/CPKU