should be eaten in regulated amounts. Soda, Kool-Aid, lemonade, popsicles, jelly, gum drops, suckers, tapioca pudding, and hard candy are “free foods” and can be consumed without worry. A child with PKU has a special drink often called Lofenalac or Phenylfree, which has most of the artificial protein substitutes, vitamins, and minerals that a child needs for growth with little or no PHE. The taste and the smell of the drink are objectionable but PKU children usually acquire a taste for the drink at and early age and grow up drinking it. The food program used to treat those with PKU typically costs around $10,000 a year or more. Health departments may pay for the formula in some states and in other states insurance may cover the cost of the food. However, a lot of insurance companies do not cover this cost since it is considered nutritional rather than medical therapy. Individuals with PKU should remain on a restricted diet throughout childhood and adolescence, and perhaps throughout life. Until recently, doctors believed that children with PKU could discontinue their special diet around age 6 when brain growth was completed. However, these children did not develop as rapidly and had more behavioral and learning disabilities. Therefore, until research provides alternative treatments, all people with PKU are being advised to remain on a restricted diet indefinitely in order to maintain a safe level of phenylalanine. The second type of treatment for PKU involves medical care. A neonate with PKU should see a physician 1-2 times a week and older children and adults should see theirs’ once a month to have their phenylalanine level checked. A psychologist should also evaluate developmental testing on young children at regular intervals to ensure that they are maturing properly. It would also be a good idea for the patient and parents to visit a nutritionist experienced with PKU whenever possible. As you can see...
