Community Discussion Forum Adults and PKU Adults With PKU Born before 1966?

Viewing 11 posts - 1 through 11 (of 11 total)
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    Avatar of Rebecca

    I was born in 1962-before the mandatory newborn screening for PKU. My youngest brother was born in 1966. He was diagnosed with it, so they tested our 2 other brothers and myself. I was 4 1/2 yrs old at the time. They diagnosed me at that time and I was hospitalized for a week in Los Angeles Children's Hospital in Hollywood, CA. A then 40-something Dr. Richard Koch was one of the doctors involved in treating me. When I was 40-something,  I was asked by Dr. Koch to return to Los Angeles Childrens Hospital for some tests. In 2003 I had the pleasure of getting reaquainted with him.
    I would like to hear from other adults with similar experiences with their PKU.


    I was born in 1958 and was finally diagnosed at 2 years and 4 months in 1961 in Sydney Australia. In Perth W.A another person was being diagnosed at the same time as me small world isn't it. My life with PKU has been challenging at times but I couldn't imagine my life any other way. The goals I have acheived have been amazing and it is fun to keep on acheiving them. I have been fortunate to have some really wonderful friends in the medical profession such as Dr Koch, Virginia Schuett etc. I have spoken at a conference with Dr Koch, Willard Centerwall and Dr Christodoulou in 1999 at Sydney university.
    I will continue in living my dream. 

    Avatar of karan

    i love that i found this- i was born in 1960 before they did mandatory testing for pku. i was 8 when i was diagnosed. i have a younger brother who was diagnosed at the same time i was diagnosed – he was 3. russell is mentally retarded and they were amazed and maybe a little confused that i wasn't. they told me some stuff about my pku that ended up bring false. i was never on the diet until about 5 years ago. i was the reason they know that there are different types of pku with different manifestations. they did all kinds of research and psychological tests on me and my family. i have been on the diet about 5 years and on kuvan for nearly 2 but for me it's not the miracle that it promises. i did respond to the kuvan but i have other health issues that cause me to have really high levels even on kuvan. when i started the diet i did so with hopes of  amazing things and drastic changes in my life but for me it hasn't happened like that. i am seriously considering going off the diet maybe until i get my asthma controlled… this has become more stressful for me than i had ever anticipated. i continually run out of any kind of food and have to eat what's available for me…pku friendly or not…it gets to the point where it's about survival not about compliance.

    Avatar of Terri

    HI… I'm Terri…I was born in Newark NJ in 1963…I have yet to meet anyone as old as myself in New Jersey w/ PKU…So glad to ahve foudn this site…so I can connect w/ all you guys! I Love to hear your stories…Fell like i finally fit in!

    Avatar of Andolyn

    Hi Terri .. i was born in 1959.. diagnosed when i was 2.

    Avatar of Don

    I was born with PKU in 1964. I was diagnosed at 6 months. Dr. Koch has been treating over the past 45 years. I have never meet anyone with PKU. I am glad to see that there is a place that adults with PKU can discuss the issues and challenges of life with PKU.

    Avatar of Lucy

    Hi! I am Lucy and I have CPKU. I was born in 1958. Tested at birth for PKU. I have not kept up with the PKUers like I should have, because I went off diet and am now trying to return. If anyone is interested in being friends. I am up for that. I right now feel like I am the only adult in West Texas with PKU, I guess because I live in a very small town in West Texas. I will try to stay in touch better.

    Avatar of Terri

    I was born in 1963…in NJ…i think, all things considered I am quite lucky as to how PKu has affected me…but right now it is the most challenging as it has ever been in my life…mostly financially…to afford the formula, the medical food etc…last blood was highest in long time….18.1…ugh..i really ahve to stay on top of this..its so hard!..and now i am sick with a cough cold, sinus headache…

    Avatar of medina

    Hello friends, I'm glad to visit you here. I read all comments, almost  all of you were diagnosed in the age between 2 to 4 . so, I want to know that Dose this delay to recognition, make some problem for you? Does this affect your health? or everyone of you is healthy and this delay doesnt affect you? I want to know that  is that true the delay in recognition may be so irrecoverably  dangerouse?

    Avatar of Thomas

    Our son, Tommy, who's now 36 was late diagnosed at age 4. This resulted in significant brain damage leaving him moderately retarded, non-verbal, with autistic tendencies and severe behavioral problems. His major problem today is his behavior which can be violent at times where he may injure himself or others. He's on a lot of meds and takes his Phenylfree2 formula and follows a low protein diet with his phe around 11. He has high anxiety with a lot of loud and angry outbursts. When we take him to a PKU Clinic all they look at is his diet but there doesn't seem to be anywhere to go for the real major issues in the Northern New Jersey/New York City area! Can anyone help us find someone or some place where Tommy can find the help he needs?!!!  

    Avatar of medina

    I think you should search for occupational therapist. He/She can help you and your son. I saw that way answers  for a person with mentally damage.

Viewing 11 posts - 1 through 11 (of 11 total)
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