Hello all My babe may be have PKU. After 14 day of birht doctors call me for second test 1-st result (in 3-th day) is 24. Second test (14 days) is 30.9 He start diet (Regular + Formula food). Diet include 4,55 gr protein from Regulat food. In day 2 we have 20.04 In day 4 we have 14.00 From day 6 we wait for results.
How much faster level must going down. I talk with doctors but in out country we have just 2 babys with PKU, and they maybe not have too much experiance. I know that first year of life is very important to avoide brain damages.
In my own experience it does take a few days for the phe levels to come down. The important thing is that your son's phe levels are coming down. Continue doing what you are doing and if for some reason your sons phe levels stop decreasing his doctors will need to decrease the amount of regular baby formula he is drinking and increase his PKU formula.
Please let me know if there is anyway I can help. Your son will be just fine, and like I said it does take a short while to get the phe levels down to an acceptable range.
My daughter is 10 months old and has PKU. Her level originally was 12 when the newborn screen was done at the hospital 48 hours after birth. By the time the results came back positive for PKU at 8 days of age her level had gone up to 42. They came down relatively quickly after that but since have been as high as 13 and as low as .1. It is very hard for the levels to stay consistent during the first year due to growth spurts, etc. Her levels really go up and down without any change in diet. From what I understand, it is not only how much phe your baby gets per day, but also how fast she is growing that can affect the level. I hope she is doing well now!