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January 28, 2010 in Uncategorized
Registered: Sep 4, 2007
Jennifer said on January 28, 2010
Yep!! If you manage your diet properly, you should be symptom free! But if you don’t maintain low blood phe levels and take proper amounts of formula, there are all kinds of things that can go wrong. Anxiety, depression, agoraphobia (fear of a lot of social interaction), trouble focusing, irritability, and even seizures can all be symptoms of unmanaged PKU in adults. If PKU goes unmanaged since birth or early childhood, the results can be much more devastating since the brain is still developing. Mental retardation, learning disabilities, Attention Deficit Hyperactivity Disorder, and/or seizures can all occur.
Registered: Sep 12, 2006
Breanna said on January 29, 2010
Jenn summed it up perfectly. With proper treatment there are no emotional or psychological symptoms. When low phe levels are not maintained or the diet is not followed completely that is when the symptoms Jenn mentioned occur.
Registered: Jul 22, 2009
Stephanie said on January 30, 2010
Just as BreaMarie and Jenn said, it is very dependent on your levels. With high levels, your brain is at risk for damage on all levels. The great news is that lowering your levels at any age will see improvement. Adults who have been off diet and gone back on see improvement. Untreated patients in adulthood who have lowered the levels have improved their quality of life.
Are you PKU? I can understand why you would not want to drink formula if you have not done so in a long time. There have been amazing advances in the treatment of PKU in the last 10 years. There are now drugs in use and being tested that might help your levels without changing your diet. If you have PKU and are interested in learning about the new treatments available, your local clinic would be the first place to start. Even if you don’t want to use a diet or formula, the clinic can help you manage the emotional symptoms you might be experiencing.
This is a great place for support. I hope you get the answers you are looking for.
Registered: Nov 1, 2008
Dana said on February 9, 2010
I was off diet for 8 years(not even on formula), and I now have brain damage. When I was a kid I did suffer from learning disabilities, and I have heard that is very common for PKU kids. I am now back on diet and formula, and am doing very well. My last level was a 7.5, so they lowered my phe intake. I am able to lead a normal life, I sometimes struggle to comprehend certain things, bit it is not bad at all. I try to count my blessings!!!
Registered: Feb 25, 2010
Sue said on February 25, 2010
I am a support person who works with an adult women with PKU she has the mental retardation she is only a year into the treatments at 51 yrs old her family did not seek help now the works begins this person has to change her eating it is very hard. I would love to hear more stories about the different treatments she has been on different juice suppliments one smelled and tasted so bad it was not even an option but she tried she is now on a much more pleasent one but I am hearing about a medication Kuvan can someone please tell me more about this medication how much and how often is this given?
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