Community Discussion Forum New to Newbie questions

Viewing 13 posts - 1 through 13 (of 13 total)
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    Avatar of Nicola

    Hi all, I’m a new member from London, England. I’m 33, and off the diet completely although I have tried to go back on it unsuccessfully – I was 13 when I was told I could come off, and it’s only in the last few years that it’s been said you should be on it in some way or other for life. I’ve tried the supplements but I hate all of them, so I just can’t be on the diet. Though obviously if I want to get pregnant I’ll have to re-think this.
    I have some questions important to me that nobody has ever answered – I have the typically pale complexion; pale skin, blue eyes, reddish blonde hair. Do you all have the pale colouring and do any of you tan? I never do and it’s infuriating because I can’t even use fake tan as it streaks, my mum says praps it’s coz of my melanin not working properly. I don’t know. I also am up and down with moods, and get depressed a lot – I’ve been told that could be connected, do any of you experience this?? I also tend to put on weight easily and am always battling with it, and being a ‘metabolic’ disorder, I wondered if it’s related to PKU and if anyone else has this?
    Other than that, hello to you all and I hope to get to know you better by way of emails over the coming weeks. It’s really great to find this website.

    Avatar of Breanna

    I’m 16, have PKU and have been on my diet my whole life. I come from a family of seven kids and both myself and my 8-year-old sister have PKU. Neither of us have the common blue eyes, we both have brown eyes like our dad. We don’t have have blonde hair but more of a dirty blonde, but we both have very light skin. I burn extremely easily and almost never tan, my little sister on the other hand tans very easily if she is outside.
    I’m pretty sure mood swings/depression are problems that occur with being off diet. If my levels are alittle bit higher I do tend to get crabby alot easier. Headaches, tiredness, lack of concentration, lack of balance and irritablity are just a few other problems that I know of.
    How many supplements have you tried? Because they’ve got some that come in the form of pills, formulas, premade juices, some that look almost like granola bars (but not quite). Do you have any contact with a medical geneticist, dietitian etc? If you do you could talk to them about getting some samples to try. They also have some new things call the Phlexy-10 add-ins that you can add into food and you won’t taste it, I’ve tried them and you can’t taste them at all. There are millions of things out there if your interested in looking into them. nBreanna n16 CPKU


    Hello, I am new to this website. I am 35 years old and I have PKU. I have never met anyone else with PKU so this website is a goldmine for me. I have classical PKU and have been on my diet for my whole life. I enjoy just about all the drinks and foods that my doctor and nutritionist have to offer. I have lived in New Jersey all my life because they pay for the formula that I drink. I want to move out of New Jersey but as far as I know there is no other state that pays for my formula. My question is, for all of you that live in different states with PKU, how do you pay for your formula? Does the state you live in pay for the formula? Since I am 35 years old I need my own insurance to cover my formula and the state covers the rest. For those of you over 21 years of age with PKU living in other states how do you pay for your formula and is there any state in this country that will cover the expense of formula for those living with PKU and are over 21? It will take about a week or two for my profile to be posted so hopefully all of you will see it. Looking forward to hearing from you all and getting answers to my questions. I want to move out of New Jersey but can’t pay for my own formula its just way too expensive. Thank you all for listening to my concerns, hope to hear from you all soon. God Bless……

    Avatar of Breanna

    Hi, I live in Wisconsin and have for my whole life. In Wisconsin the state is required to provide formula to people with PKU for life. The state also pays for some low protein foods like pastas, baking mix etc.
    I was just curious, what formula do you drink? I drink Vitaflo PKU coolers and XPhe Maxamum juice boxes. nBreanna 16 CPKU

    Avatar of Nick

    Hello, I was off the diet for around 30 years, so maybe I can help you out a bit. The symptoms you list probably are PKU related. I have a milder form of PKU, so I do have some ability to break down phe, and I don’t have the very pale complexion – I’m naturally very pale (Norwegian ancestry), and don’t tan really well, but I do tan. I also have fairly dark hair and eyes. However, as I said, I have mild PKU. I was taken off the diet at age 3 (which was standard practice in the US in the ’70s) and just went back on recently. I haven’t had much for negative effects of being off…except for one – which I just learned recently (from Dr. Richard Koch) – I’ve struggled with my weight all my life, and apparently high levels of phe in the blood interfere with fat metabolism (or at least that is Dr. Koch’ speculation), and makes putting on weight easy and losing it hard. Now, many people wonder why I went back on the diet, seeing as I have had virtually no negative effects from being off. My initial reasoning is this: having been born in 1972, and treatment of PKU having begun (at least being universal) less than 10 years earlier, no one really knows what being off-diet long-term can do. I thought that the inconvenience of formula and a lower-phe diet were small prices to pay to avoid problems like brain damage. Recently, I read a statment by Dr. Koch that people with the milder form of PKU (like me) who are off-diet 20-30 years generally start having problems much like those with cPKU do much earlier. “If the person is fortunate and born with only one severe mutation and another that permits partial activity of the enzyme that can convert phenylalanine to tyrosine, the person has a less severe form of the disorder. If the diet is discontinued, that person may live for 20 to 30 years on a normal diet, but eventually will develop one or more of the complications seen in persons off-diet, such as mental illness, IQ decline, seizures, etc. Off-diet blood phenylalanine levels usually are between 15-20 mg/dl ( 900-1200


    Hello there Breana, thank you for your reply. To answer your question, I drink Phenal-ade(vanilla, chocolate and strawberry)I am not too crazy about orange-cream but I will drink it from time to time. I drink the coolers also and the xphe box drinks as well. I will pretty much try anything my nutritionist gives me. It all taste pretty good to me. Thanks so much about the info on Wisconson, I’ll move just about anywhere that offers to pay for my drinks at this point, but I don’t know if my wife would want to move to Wisconson, but who knows. I appreciate your info. Have a good evening Breana. God Bless.

    Avatar of Breanna

    Cool, at one point or another I’ve drank basically anything Phenylade has. The most recent one I drank was the Phenylade chocolate. I think I’ve been drinking that since I was 12 up until last Sept when I switched to what I’m drinking now. I had to stop drinking Phenylade because it gave me a stomach and I was having trouble drinking it all. nBreanna


    Breanna, I have a question. What do you drink now? I still drink the phenal-ade plus I mix the phenal-free and the High Protein phenal-free together and I drink that. And what kinds of foods do you eat throughout the day? Do you ever get tempted by some foods because you like them but you can’t have them? It happens to me sometimes. I have some favorite foods but I can’t eat them, because they have way too much protein. What is it like to live with someone with PKU? I have one older sister but I am the only one in my famiy with PKU. I have never met anyone else with PKU in my life so I wonder what its like to meet someone else who deals with it. talk to you soon, I gotta go and feed my son….

    Avatar of Breanna

    I drink Vitaflo PKU express coolers (both purple and orange) and XPhe Maxamum juice boxes (both berry and orange). But from when I was about three up until last September I was switching formulas basically every 6 months-1 year because I never liked anything that I was given.
    Hmm…throughout the day I eat ALOT of potatoes: hashbrowns, fries, mashed potatoes (without milk of course), baked potatoes etc. I like pasta with speghetti sauce, tomato soup or mushroom soup. My mom was able to find the Ener G tapioca bread at a local Pick N Save near our house. So I eat alot of thinks like PB & J, cheese sandwiches, garlic bread. And of course this is all low pro.
    Having a sister with PKU is okay. She always eats my food before I get a chance to haha . But it’s nice because I don’t feel so outnumbered when we go for PKU appointments because it’s not a bunch of adults with one kid.
    I only really have a problem with eatting things I really shouldn’t when I’m at school. Even then it’s more like I’m eatting too much of something I can have. For example I can have potatoe chips, but sometimes I just eat alittle bit more then I should. nBreanna

    Avatar of Tracie

    Hi PKU Chick,
    I too am from Manchester, England. nWhen i was Diagnosed with PKU my parents moved too the states.
    I too am pale as heck,blonde,blue eyes,and cannot tan for the life of me.LOL
    I am a little older than you,and just started back on diet 1 month ago.
    I do have a 10 yr. old daughter,and i did go back on diet to have her.
    Believe it or not when your biological clock is ticking(LOL) the formula is easy to get down.
    I had her at 28 yrs old.,and she is perfect.
    I planned her completely.
    I was on the formula Phenex 2 2 months prior to conception,and it is well worth it.
    Now i did go off diet right after her,and suffered for it. nMooodswings,Headaches,Violent outburts, Anxiety,PKU seizures,and worst of all Anorexia.
    It would be worth it to you to go on diet.
    I know its not easy,but that is why we are here.
    BreaMarie is a smart young lady who can give you great advice on new types of formula,Kuvan,or the coolers she speaks about. n(That is what i am trying to get my dietition to let me start)
    Right now its Phenex 2, and Kuvan(60 pills a day)Ouch!LOL
    I hope i was some help.
    Take care in the UK.I sure do miss it. nBelieve it or not the weather too.LOL
    I will do a friend req. if you wanna talk.
    Take care, nTracie-PKU

    Avatar of Tracie

    [/COLOR][COLOR=red]Hello Encourager,
    I live in a state where i have to pay for everything including formula.
    Asotin WA.
    It costs me about $600.00 a month just for formula and Kuvan.OUCH.
    Unfortunantley my husaband makes too much money, and our current Insurance says its pre-exiting,and wont cover squat.
    Isn’t that wonderful.LOL
    Honestly i try to stay postive,but when a PKU patient can’t afford it that is why it maybe easier to go off diet.
    Take care, nTracie-PKU

    Avatar of Evan

    Hello everyone, I am Evan. PKUchick I can have problems with moods every once and a while as well so I know what you mean. I do tan during the summer, not like brown tan, but pretty decently. Also PKUchick all the things you said seem to be related to PKU, and I highly suggest you stick with treatment

    Avatar of Jennifer

    hey girl!! that is soooo cool you live in london. i’ve been there once and would love to go back. what an awesome city. anyways, i’m sure you’ve already figured out all of your features and symptoms are pretty much standard for pku patients. our pale skin is due to a lack of melanin which in part is produced by phenylalanine. the same is true with your hair color. having too much phe in your blood causes your hair to be light. my hair is dark auburn. if i were to go off the diet, it would lighten. as for self-tanner, i use it and it works good for me. i’ve found the gradual kind works a lot better, smells better, and doesn’t streak as easy. your mood swings and depression are also from too much phe. the phenylalaline in your blood stream builds up in your brain. it prevents your neurons from producing myelin, which is kind of like a conductor for all those signals your brain sends. i notice this a lot with myself as well. if i have too much protein, i tend to be a lot more moody and sometimes have anxiety attacks. as for the weight, i really don’t know much about that. i know it sucks eating like a rabbit all the time, but it is VERY beneficial to your body. the formula is hard for me to get down as well. i now take JUST pills. the name is Phlexy-10 Tablets. 60 a day. it sounds like a lot, but if you split it up to 20 pills a day 3 times a day, its really not that bad. it takes me no more than 5 minutes to consume 20 pills, and i dont have a strong nasty aftertaste in my mouth. the pills also contain a lot of fiber, which is good for your system as well.[/FONT]

Viewing 13 posts - 1 through 13 (of 13 total)
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