Hi! My name is Jenn, Im 24 and I live in Glasgow, Scotland. I have been on the PKU diet all my life and I find it very hard to control. My levels are mostly up in the 1000’s but I have been known to get them down to the 300’s.
Im having problems accepting the diet and controlling it. I know I can do it but I Just seem to be unable to do it long term. Is there anyone who has been or is in the same situation as me and may be able to offer any advice? I really need help as my coursework for college and relationships with my friends and family are beginning to suffer. I have to get control of this before its too late. If anyone can help I’d be very grateful.
Hi Jenn, My name’s Breanna, I’m 15 and have PKU aswell. I have had alittle trouble with my levels before but it has gotten easier. I’m not sure if your around friends much but for me when I was in about 7th grade my problem was that my friends offered me foods and I took them without thinking and also I went to middle school and they had more choices for foods to eat at lunch. After awhile I got my level back and it was about a 23 (I’m not sure how you count your levels but mine are supposed to be between 2-6). I ended up telling my friends not to offer me anything anymore and to not let me get anything that they knew I shouldn’t have like sour cream pringles or regular chocolate chip cookies and things like that.
I’m not sure if that helped much, but it has always just helped me more to have people my age telling me not to eat things I can’t have, even if they don’t have PKU. Frankly, when my mom says not to eat something I just ignore her but if friends say it for me it’s like I can’t ignore it. I hope that helped somewhat. nBreanna
Hi Jen, My name is Bella I’m 22 and I have PKU too. I live in the Midlands in England. I was very good with my diet up until the age of about 15 thanks to my mum and dad. But then I came off diet until last year. For a while when I came back on to diet I was really enthusiatic with taking my supplements. But then the novelty wore off and trying to take 85 tablets when doing 12hr shifts as i was training to be a paediatric nurse just wasnt going to work!!! I’m just about to start a new job as a nurse and so have thought to myself new job new beginnings! I’m finding it very hard especially wen going out for dinner to choose sumthing I’m allowed after eating meat previously! I think the best advice I can give is perhaps get sum1 to remind you to take ur supplement at the right times or set alarms on your fone. I find I’ll take it if my mum bugs me enough or if I’m reminded, otherwise I’m too busy doing other stuff! With diet I think you’ve just gota be determined and either cut out the bad stuff completely or be gud for say a week and eat everything your supposed to,hen perhaps treat yourself. Because I’ve found even if ihavent been really gud and perhaps have eaten a bit of chicken or sumthin as long as i take all my supplent my levels are still 700 or below. You’ve just gota be strong and strict with yourself. L know its hard and I’m having problems myself at the mo. But I’m determined to get a new supplement better suited to me and get myself sorted. If you wana keep in contact. We can encourage each other, reply and I will give you my email.
do you guys have mild pku or something ? j/w thanks heather <3
I have Classical PKU which is the more I guess you could say the more serious case. It just means that I have less phes then others with PKU. Correct me if I’m wrong, but I think the types of PKU are just based off of how much phenylalanie your body can handle. nBreanna
yes thats what my son has also
HI Bella! How are you? Hope all is well with you. I havent checked this site in a while so thats why its taken so long to reply to you.
PKU isnt going well at all. Its affecting my coursework and my placement. Its that bad that my lecturer and mentor have both suggested I take some time off to sort myself out and get on track again. So Im at my wits end and Im losing my motivation to nurse. I think Ill prob take some time out and work really hard at finding my confidence again which I believe will return with control of the diet.
Have you tried the PKU cooler 20? Thats the supplement I take and I find it really easy to take as I only have to take 3 per day and theres only 174mls in them. I took the tablets as well for a while but I was missing too many of themand had to go back to maxamum. The coolers are great. No-one knows what it is they think its a sports drink. If you havent tried them, give them a go coz they really worked for me. Still do when I stick to the diet
Would be good to keep in touch with you. I have a myspace page which I am on more regularly. http://www.myspace.com/j3npku It prob will be easier to get me on that. nHope to hear from you soon nHope the job is going well. nTake care nJenn xx
I have the Classical type of PKU too. Im on 4 exchanges a day (well Im supposed to be!) so I also have the more severe case of PKU.
i do not have pku but i feel bad because you go threw something different and i want to no about pku what it is,is it that bad and what you go threw thats all…
boo1210, Hi my name’s Breann and I’m 15 and both me and my 8 year old sister (Erica) have PKU and like everything in life there are the ups and downs. For me atleast, PKU is just a part of my life and I just live with it. I guess a plus is that since I don’t eat meat and things high in protien I don’t gain alot of weight easily . Think of it this way, if you’ve never had sushi you won’t miss it, and I’ve never had alot of foods so I’ll never miss them. For me PKU isn’t really bad, all that is different in my life is I eat alittle different, but then again nobody in the world eats exactly the same things as another person anyway right ? Although when I was younger it did bug me alittle just because I wanted to be just like everyone else, but as of today I realize nobody is exactly the same. Also with having both my parents, grandparents, alot of aunts, uncles and cousins plus my 4 sisters and brother who don’t have PKU to support me it hasn’t been to hard.
If you need to know what PKU is I’ll put it as simple as I can(although it might not sound as simple). PKU is a genetic disorder where people have a missing or deficient enzyme that converts something in protien called phenlalanie (which is found in almost all foods) into tyrosine and since people with PKU are missing the enzyme their bodies send the phenlalanie (or phes) to the body instead of tyrosine.
PKU is relatively rare and I think it’s 1 out of every 15,000-20,000 babies have PKU. PKU is detected (in most occasions) thru a newborn screening that has been required in the USA since around 1961. The newborn screening is basically a heel poke and a few drops of blood. This newborn screening is also used to test for many other genetic disorders. To develop PKU both parents must be a “carrier” of the PKU gene, meaning they are just carrying the gene (it doesn’t mean they have PKU). If both parents are carriers then there is a 1/4 chance their child will have PKU and 1/2 chance their children will be carriers.
People with PKU have to be put on a low protien diet which means, for most pku people, no foods high in protein which means no meat, dairy, few grains ect. To get the nutrition that we are missing due to not eating meat and such we have to drink a special metabolic formula.Too much phes can build up in the blood stream and limit the blood flow and oxygen to the brain which can cause things like: tremors or shakes, headaches, irratablity, mood swings, vomitting, memory loss, behavior issues, lower IQ and if untreated for a long enough time a person can become mentally retarded. I know there are other things that can happen that I haven’t mentioned.
Also we have to do regularly blood tests to check the phe level in our bodies to be sure we don’t take in to much (that’s basically the only thing I don’t like about having PKU, just because I don’t like needles I know I’m a whimp). So basically if people with PKU follow this diet of low protein foods and drink their special formula they can live happy, healthy and normal lifes. Luckily for me and my sister we are living wonderful lives! I’m almost a straight A student and I am in one of the top classes at the local dance studio that I dance at.
If you want to know more you can go to the “About PKU” link at the top of this page or search either PKU or phenylketonuria on google or yahoo.
Anyone feel free to correct me if I got any of this info wrong, I’m 15 and still learning a new thing about my PKU everyday. I hope this helped alittle, if you have anymore questions feel free to email me at firstname.lastname@example.org or leave a message here. nBreanna
Sorry for the extremely long post