hi my name is Maddy(short for Madeleine), im 14, and i have CPKU. I just figured out this website, and i love it. im really happy to be able to contact someone around my age that also has PKU. At school only a few people know i have PKU, i try to keep it on the low, cus i hate all the stupid questions, and the pittying expressions, i just decline politely what is offered to me, and i just try to live my life as normaly as possible! nAlthough i live in america, im english, and i still kinda stick to the way they count PHE. i don’t know how it works in America,(my doctors have told me it works alot dirrerently) but i am aloud 4 grams of protein a day. does anione understand that? if so how much protien can you eat? when i was 5 i met a newborn baby that could eat 19 grams a day, so that has kinda pissed me off my whole life. aniway, i would love to hear from anyone who reads this, thanx -me
Lol, yeah that always makes me mad to when someone tells me they get way more phes then me (that’s what we count in). It’s always been alittle confusing to me because some people count by phes, some by exchanges and some by protien. By the way my names Breanna and I’m 15 and have CPKU. Just alittle about me: I have 5 sisters and a brother and Erica (she’s 8) has PKU too. Me and my sister both get 300 phes a day (which is 20 exchanges for those who go by that, but I’m not sure how to count that in protien I think it’s about 6g? I don’t know my mom said each gram of protien is about 50 phes). There was a point when my little sister was like 5 and she got 350 and I only got 300phes and it made me soooo mad! Some of my friends know about my PKU but not alot, just the really close friends. Well I would stick around alittle longer but I actually have dance classes (we might get our costumes for the nutcracker so I’m super excited!) Talk to you soon. nBreanna
i am the only one in my family to have PKU. My sister and mum allways help me out on the diet, but i still find it annoying. I just feel as if they don’t really understand what it’s like so some of their cormfort is kinda pointless. there are times when i get so mad, i just feel like giving up on the whole diet, (it only lasts at most a day)
Yeah things like that tend to last a very little time for me too. Since my sister is 7 years younger then me it really doesn’t matter that she has PKU too because I’m the one whose following her around and making sure she eats what she’s supposed to because me dad isn’t good with the diet and my mom works alot. So her having PKU just means I have an extra diet to watch which is a pain.
wow that must be annoying! Do you measure EVERYTHING you eat? i hardly measure out anithing, i just guess, my weighing scales are ancient! literally, as old as me! lol
Lol, our scales are old to and no I don’t really actually measure foods. I do once in awhile but usually I do the whole ‘oh this looks like so many grams so it is’ type of a thing. I don’t really do that with my sister though, I actually measure out her food, because I’d feel bad if I made a mistake and her levels were bad. When my mom is home she takes over the diet but when it’s just my dad I have to help with the diet becuase he works night shifts so he sleeps plus even if he is awake he does the whole guess thing, but the difference is he’s really really bad a guessing. He can look at something that is 1 cup and think it’s only 1/4 cup. nBreanna
i have tons of trouble finding something enjoyable for breakfast! what kinda things do you eat? some times i have PKU toast, but i find the bread really chunky and thick, so im not too keen on it. Other times i have buckwheat waffles (only 1/2 per waffle) and i can buy those in a store, so they’re ok. but i just get really fed up with thost two things, ani ideas?
Well sometimes I forget to have breakfast just because I wake up late and have to rush off to school but when I do I sometimes have cambrooke low pro eggs (not sure if you’ve ever ordered from cambrooke) but most of the time I just have like alittle bit of regular cereal like cap n crunch or honey combs with some riches coffee rich (coffee creamer) the coffee rich is like only 22 phes for 1/2c or I think like 1.4 exchanges. Not sure what it is in protien.
EGGS!!!!!!!!! IV”E NEVER HERD OF LOW PROTEIN THOSE!!!!!! WOW!!!! MY diatition better be ready for a big order! IM really excited now! are they any good?
Yeah I think their pretty good, although they do taste kind of sweet which I’m sure regular eggs don’t taste like that but yes I like them. I’m not sure if you can get them thru your dietian because they are from cambrooke so you might have to go and order it through them. I can find out the number for you if you need me to and I know they have a website aswell.
great! that’s really exciting!!! do they look like eggs? how do you cook them?
Yeah they look as much like eggs as their gonna get, but sometimes when you make omelettes they get like the smoothness of a pancake but I say whatever because they taste good either way. You can just cook them on a stove and make them into omelettes or scrambled eggs (you can’t do boil though becuase that would require an egg shell…but I guess if you really wanted to you could try… :p>
scrambled egg!! wow, thats really cool!! my pancakes are never as thin or as big as the normal ones, and if they ever get to be at all thin, then they fall apart so badly, they end up looking like scrambled eggs! not good!
Lol, yeah I know what you mean. Have you ever tried using the mixquick mix by cambrooke? If you just add water to that it usually works out really well for pancakes and other things, that way if you want thick pancakes you only add alittle water and then alot of water gives you thin pancakes.
yeah, i have but i havn’t tried experimenting with the amounts of ater! good idea! im excited now! thanks!