Community Discussion Forum Parent support Hi from Cornwall England Reply To: Hi from Cornwall England

Avatar of Tracie

Hi SueandBen,
I hope your not to muddy Ben,but i bet its a blast!!! nAnyways I actually start Kuvan next week.
I have been having some migrains latley,and Dr.Koch(PKU DR.)says it will all go away when i am able to start it.(Thank God)
I cannot wait to start it. nMy Mum and Dad had the exact PKU gene which i guess is very rare.I am L348V/L348V. nSo the doctor says i should benifit from the nKuvan.My body breaks down some protein,but they don’t know how much and how fast.
I get my PHE level tested this Tuesday.I am praying its low,but who knows.Dr.Koch thinks my brain maybe swollen due to lack of protein,but i also have a miss-alligned jaw,which requires surgery. nSo i think my headaches are from my jaw,but we will definitly know something in a week or two. nKeep your fingers crossed.
Its getting late,and i will stop or i’ll keep going forever.
Take Care,and stay warm. nGoodNight to you all.

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