I am new to this forum, here is my story: I have a 40 yr. old sister with PKU who was diagnosed to late to discover that she had PKU. She is living at home with our Mother who is trying to take care of her. My sister is able to do most things if you explain in detail how to. The past 10 to 15 years has been very bad for her, she has been having so much pain: for example, headaches, pain in both sides, back ache and stomache problems. The first of this year a specialist in London, Ontario has put her on a special diet with very low protein levels, she has lost alot of weight and had appeared much better till the other night when she lost consiousness and seemed to have trouble breathing…she was transported to our local hospital…where she had another spell to what they called seizures, now she is on anti-seizure medication. I was wondering if anyone else has had this sort of experience.
Shirl, I have a question, was your sister on a low protein/PKU diet before she began having seizures? Even if she was diagnosed late she should still have went onto the diet when she found out if she is not already. Do you do blood tests with her? Because I know that most of what you’re explaining are symptoms of high phe levels. When my levels are to high I do get tired, lack concentration, get headaches and muscle pains. There are also alot of other symptoms aswell and seizures would be one of the more serious ones. nBreanna 15 (soon to be 16!) w/CPKU
Honestly Shirl, I did suffer from seizures,and headaches plus other problems.That was also off diet. nMay i ask if she is currently on PKU diet? I also should mention that i just plainly cannot eat any kind of meat,chicken or fish. I do go into a violent rages and mood swings. nUnfortunatley just ask my hubby.( Such a great Guy). Anyways i hope i was some informative for you. I am always on looking for extra support. I will send you a friend req. if ever you need to talk iam here for you. Take care, nTracie-PKU