Community Discussion Forum New to Mother to 18 year old son Reply To: Mother to 18 year old son

Avatar of Melanie


      Thank you so much for your reply! 

I found a geneticist in my area that I will be calling Monday morning (I'm not even sure if that's the type of doctor I should be seeking but at least it's a start) I will be looking today to see if there are any clinics in my area also. I'm glad you clarified that it is in fact possible for levels to rise and that this could be the cause of the extreme changes in my son. Honestly, he's a wonderful person! I don't want to give the impression that he's not, his recent behavior is VERY out of character! 

     I've also sat down with him and explained everything to him, which I think made him feel much better. He does not understand why he is acting this way either and he does not like it. I had not told him prior to this about PKU because I never knew that so much had been discovered. 

     All of the symptoms that you've listed above apply to my son, including the eczema – which I also did not know was a symptom. I will keep you updated after our scheduled appointment. 

     I'm happy to report that we did get him enrolled in an alternative school, he was to attend only 3 hours a day until he graduated because he only had 1 class left to finish. He takes short tests every day and was struggling to even complete them in the 3 hour time frame (the other kids in the class are able to complete 2 tests in this time frame -it was taking my son approx. 4 days to complete just 1 test) I've since spoken with the staff at the school and they have him in full time now and he's able to complete what is required of him and he will graduate March 15th. (He's put in some major work at home with us trying to get caught up so that he's able to stay on task at school).

Have a wonderful day Breanna! I'll reply back after our appointment. 


Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional