Community Discussion Forum Adults and PKU Off the diet

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #5884
    Avatar of Meaghan

    Hey everyone,
    My name is Meaghan and I am 18 with CPKU. I see so many older people saying that they are off the diet and have been for a long time. I was just wondering why you would do that? I’ve been told all my life the only way to stay absolutely healthy is to stay on the diet. I’m going to stay on it and have no thought of changing but I was wondering what made people decide to stop. What do your doctors say?
    sincerely, nMeaghan 18 college w/CPKU

    Avatar of Orla

    I so agree with you I dont know why people wpuld come off the diet at all. How did their doctors let them I was told never to come off it and I didn’t. I think that will make things easier for me in the long run. nWhere are you from? I live in Ireland I go to Temple street hospital. nOrla

    Avatar of Breanna

    Alot of the reasons why some adults are off their diet is because as children years ago that was what doctors believed. Years ago (probably before I was born I think) doctors were new to PKU and they thought that because the brain stops developing between 4-6years that it would be okay to stop the diet. So they started taking kids off the diet only to find out that being off the diet still effected your brain no matter how old you are.
    As for the reason why they are still of diet even though doctors now know that the diet is for life, that is something you would have to ask some of the adults who are off. From what I’ve heard from a few adults I’ve met, some of them (not all) were never contacted by their clinics and told to be back on diet after they lost contact because they were off.
    I’m not off diet and like you guys I don’t plan to ever go off. But this is just what I know. nBreanna n16 w/CPKU

    Avatar of Meaghan

    I live on Long Island in the US and go to Siena College in upstate New York.

    Avatar of mary

    hi there may rogers
    my name is mary-jo i am a 46 year old
    adult w/pku i have been off the dite
    sence i was 7/8 years old b/c the
    dr told my mother 2 stop it
    then i also have 2 other siblings
    w/p.k.u they did not get any thing
    my 2nd older sister was 2 b 4 they found out
    she had it so she just kepet throwing up
    b/c it was 2 late 4 her it my bro was very
    sick as a baby so they could not get it 2
    stay down and they knew i would have it
    so i went on the formula as soon as i was
    borne ,i was born in 61 so they did not
    know any thing about it back then so
    my morther was learning along w/ the drs
    and that is all they knew so the drs
    told my mom that it was all right
    2 take me/us off the formula at the age of 7
    b/c that is when they brain is fully developed
    thats what the drs told my mother
    so thats why i was off the dite 4 this long/but
    now my sister,i r trying 2 get back on the dite
    we doing what they call add-inns u mix this powder
    in w/your food so i feel that my life has been wasted/and i feel v gulity about this. b/c they did not have there golden years b/c of 3 of us the other 2 are worse
    than me but my sister is married/oldest sister is normal but she got an enzyme from both my mom,my dad
    she is a carrier. the sister that got the enzymes she got
    left my mom,dad w/1 4 each of them/and that left the 3 of us
    with nothing. /yes i hate haveing p.k.u it rulened my life,
    my mom,dads i think !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    thank you 4 listening
    too me

    Avatar of Tim

    As the father of four children of which one has CPKU I will tell you why many of the people are off diet (my opinion).
    The cost $$.
    It is very expensive to purchase the formula then add to that the doctors do not want to write a prescription if they can not follow and see the patient – and many of those who are above the age of 18 – 21 (depending on the state laws) are no longer covered by the state.
    This represents a huge burden at $40.00 per can and you must buy a case of six at a time ($240.00) which may only be a 4-5 week supply. Do the math and this comes to over $2,000+ per year for young adults who are tyring to go to college or just getting started in their careers.
    I am fortunate to have a good job and insurance. But in my state of Mississippi the group insurance does not cover my sons formula (he is 3 years old) even though I have group insurance and it is as important to him as insulin is to a diabetic. This really frustrates me as you can imagine. In fact the insurance company said to me the only way they would cover the prescription formula is if my son was fed through a tube in his belly.
    So my stay-at-home wife and I pay out $240.00 every 4-5 weeks for a case of formula as well as paying our monthly group insurance premiums of $380.00 for the family as well as we must purchase at least $200.00 of low pro foods from Cambrook foods out of our own pocket each month.
    Though it is not mentioned in the forum here – I believe this is why many people are “off diet”.
    TC – Father of “West” w/ CPKU

    Avatar of Breanna

    Wow, yes I’m sure that is defintally another reason why many people go off diet. That’s why I’m so glad that Wisconsin covers the formula because for my little sister one can of her formula lasts her two, three days tops. She doesn’t need to drink that much formula but that is how much she does drink. nBre

    Avatar of Giulio

    hey everyone…
    im new to this site… and my name is Giulio, 24, and have MPKU. I live in Montreal, Quebec (Canada) and have beed off the diet for quite some time now. I am contemplating restarting but my only concern is the lack of knowldgeable physicians or dietians to help me monitor this with me – this is quite annoying. The ones that are informed of this disease are the located in kids hospitals (care for children) So what this means is that if you are 18 year old your stuck finding yourself your own doctor.
    Not to too long ago they (the childrens Hospital) called me and some other PKU carriers back in to see if we were interested in getting back on the diet. The only problem was that it needed to be a rigurous, monitored diet- one which invloved me to travel to the down town area every 2 weeks to get tested- not forgetting- having to drink those horrendous powder/watered shakes! I decided to attend but then never went back simply due to a very busy scedule that didnt allow me to take off work to visit the hospital every other week!
    I am in the best shape (semi-pro soccer player, soccer coach) I’ve ever been and it’s partly thanks to the first 16-17 years or so of being on the diet. I work with a company Called Matrox, which is a leading, innovative graphic/video/imaging hardware/software comopany. It’s been 6-7 years now i have been off the diet and it was reccomended that I stay on the diet… although I’d really like too, it’s quite difficult at times… If i continue off the diet? does anyone know if anything or what can happen?
    Here in Canada we are a bit more fortunate that all the food or low in protein products from the CLSC or (Also Known As: clinic food bank) is all paid by the government (or most of it if im not mistaken) Maybe I should get back on the formula, even though I despise the taste of the mix (powder+water)… Should I?
    Thanks for listening… nGiulio

    Avatar of Meaghan

    Believe me I know the burdens of the cost of the formula and food. But from what it sounds like that isnt the primaryreason many people are off the diet. I know that Gutherie discovered the “secrets of PKU” if you will in the late 60s or 70s. My question I would think is more towards kids my age and young adults that doctors knew more about.Many people I know just dont like the diet so they say “forget it” in a sense. My sister (non-pku) went to Australia for a semester about 4 years ago and she went to a walkathon for PKU and they were selling ham sandwiches to people with PKU. I dont know I guess it’s more that kind of stuff I don’t understand.

    Avatar of Breanna

    Yeah, if you mean stuff like that then yes that is dumb. They were selling ham sandwiches to people with PKU? That’s crazy!

    Avatar of kate

    Hi, my name is Kate and I am new to this site. I am 34 years old and have been off my diet from i was 6 months old. I have had no follow up medically from i was 11 years old and have just started to research PKU as my husband and i are trying to start a family. I really have no idea about PKU and to tell you the truth this is now frightening me somewhat! could anyone suggest how i go about starting a diet before pregnancy? I have contacted a metabolic clinic and i am going to have my levels checked, fist time in 23 years! I think i have slipped through the net somehow! Any advice would be really appreciated. k

    Avatar of karan

    After reading all the post on this issue of why anyone would even consider going off diet I think that it’s a combination of all the above. The cost is absolutely INSANE but you’re stuck… you gotta do it. It’s really hard for those of us who have very limited funds ( I ‘m disabled due to never having been on diet) I agree that part of it is that some people go off- diet because they come to a point where they just want to eat “normal food” I was off – diet all my life. I am 47 and wasn’t diagnosed until I was 8. because I was 8 they never even put me on the diet. I was somewhat of a prodigy in that I was the first person they’d found anywhere who was late diagnosed with untreated PKU who wasn’t mentally retarded. They told me I was a celeberty. This meant nothing to me. All I knew was that I was REALLY SLOW in school and barely graduated HS and am disabled unable to keep a job due to having PKU that was never treated with a restricted diet. I would N-E V-E-R even think about going off- diet. People go off diet for a number of reasons and all have trouble at times sticking to it, but if you want a normal happy healthy life stay on the diet a decision to stay off diet could have catastrophic results( not right away it takes years) Why risk it?????

    Avatar of Chad

    Hello all nMy name is Chad I am new to this site. I am a Firefighter/EMT I have pku and I have been off the diet since I was 13 years old, I am now 32. I am thinking of getting back on. It is just so hard once you have been off for so long. If anyone has any advice to make things easier it would be a great help

    Avatar of anita

    hi guys nam a support worker for a gentleman who has severe disability due to no one assisting with his diet.hes 49 & only started diet last he is non verbal i wonder if you can share what are the side effects of non compliance of diet.he is now on 18 gms protein per day but we have staff who are not keeping him to the 18 gms per day………..if i was aware of some of the side effects maybe i can assist him a little better…have found he gets quite angry & irritated…?? is this one of the side effects…cheers

    Avatar of Breanna

    Yes, irritation and aggression are some signs of high phe levels. I will list as many side effects of elevated phe levels that I can think of:
    lack of energy
    poor concentration
    mood swings/easily irritated/aggressive
    mousy odor in sweat/urine
    I do know that there are many other symptoms but this is all I can remember at this time. I hope this helps you alittle bit and I really think somebody needs to get the rest of the staff working harder to make sure he gets only as much food in as he his allowed. This is very important!
    16 CPKU

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