Community Discussion Forum Parent support Low Levels in CPKU Preemies HELP PLEASE Reply To: Low Levels in CPKU Preemies HELP PLEASE

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I do have a myspace page, I’m not sure how you find it though, it’s Nikki P. That’s my name or whatever on there. I just got bad news today and I don’t even know how to take it. His clinic keeps saying don’t worry, but they have not given me a valid reason to not worry. His eyes at 4 months are still not controlled. He is cross eyed and his eyes wander away from eachother all the time and the eye doc sed it could be related to brain damage and he needs an MRI, but his clinic doesn’t want to do it. How can a mom not worry about that??? I hate the feeling with PKU, because there really is no way to tell what’s going on in his little body until it’s too late!! i just want an answer you know…wouldn’t you?

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