My Current PKU Status

My Current PKU Status

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My Current PKU Status

January 22, 2015 in Living with PKU

I just turned 53 years old. I have been off-diet since the age of 5. I wasn't diagnosed until I was 4 years old and my youngest brother was screened and diagnosed with it. When they back-pedaled and tested me...well the rest was history. When I was born in 1962, newborn screenings were not mandatory and rarely done at hospitals. My brother Mike was born in 1963, my brother Steve in 1965, and my youngest brother Tim in 1966-the first year that pretty much everyone was on board and doing the mandatory testing. When Tim was found to have it, they tested my other 2 brothers and myself. That's how my mom and dad found out not only that they had 2 kids instead of one with PKU, but that I would be mentally retarded by the time I was in grade-school. They told my parents to prepare to have me institutionalized-for I would be far to great a burden for them to handle with 3 other children-one with treatable PKU-to take care of. I'm very glad-to say the least-that they did not take the doctor's advice.

3 Reviews of My Current PKU Status

  1. Registered: Mar 15, 2015

    Posts: 0

    eugene, Oregon

    That what we went threw to only we found out when my litlle sister was 2 years old. I was in first or second grade then. She was born in 62 we were the first faimly They found that had it in the US. I have 2 more sisters besides me and we all have it, They told my mom and dad the sameth8ing as you. But it made them wonder how I was able to go to shcool. I was struggling with leaning problems. But was learning slowly. I am 59 now I am the oldest of my sisters, I have 4 kids of my own, Oldest one of them is 31. They are all PKU free. 2 are going to community College. The other 2 are disabled with another birth defect and unable to work.

  2. Registered: Jan 6, 2015

    Posts: 0

    Phoenix, Arizona

    My parents were also told the same as both of you. I to was born in 1962, December and in Va. the newborn screening did not start until April of 1963. I was already almost 6 mths old before my CPKU was found. My parents were GREAT!!!! I was kept very strict on the diet even though the next door neighbors would call my mom to snitch on me when I raided their fridge for fried chicken legs. I am the oldest of three and my brother and sister do not have PKU however some yrs later one of my first cousins did. Weird, until me there was no indication of anyone in the past having what may have been and there have been no born since my cousin. As I am getting older I am having many health problems that may be related to my PKU. I would love to be able to connect with another adult with CPKU and share stories and lend support . Be able to take better care of myself and hopefully limit some of the Neuro problems in my future.

  3. Registered: Apr 16, 2016

    Posts: 0

    No Location

    I am coming up for 56,yrs and wasnt discovered untill I was2yrs old and I was switly put on the pku diet I was born in belfast in 1960 and it was so rare then that I was the first person to be born with pku and then when my sister was born shes 4years younger than me they done the heel test (guthrie)she also had it I was put on a substance called minophen the substitute for baby milk then growing up it was cymogran with a yellowy syrup and ketovite tablets to be taken every day I was 13 my sister was10when we were allowed a trial to come off diet we whent to dinner school and we could have anything for lunch but that was the only time and as we were doing ok we were allowed off diet altogether but when I was36 I jad to go back on diet as I was having twins so they were extra carefu with me. I voluntarily whent back on diet as I felt I needed to be back on it I am seeing doctor and dietician regularly I take the air coolers my problem was sticking to low protein drinks but I have been taking them since january this year and try to watch my diet as im also trying to lose weight although im not really heavy but so far so good

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