Infant

As an infant, Periflex Early Years is typically the formula that they will be started on. Unfortunately, there are not many options on the market for PKU friendly formulas. Having protein in your diet is still important. Therefore, infants are generally put on Periflex and a formula with protein in it, or breastmilk. The two are carefully measured and spot checks are taken weekly to make sure that their levels are not too low, and not too high. Most specialists in the United States aim to have levels between 2 and 6. However, some will say that anything below 10 is fine. It depends on the infant and the specialist that handles their case.

It is usually too early at the infant stage to determine how much their tolerance to protein is. in our case, our recipes for formula change quite frequently to adjust her Phe intake. However, every baby is different. Don't get discouraged if you are going through the same thing. I know how stressful it can be, but rest assured you're doing everything you can!

Periflex Early years causes some infants to have acid reflux, and a bit more spit-ups than usual. Not every infant goes through this though. This formula is more acidic than other formulas containing protein. In our case, our daughter gets acid reflux and large spitups. Once she is closer to a year old, we will be able to switch her to a plant-based formula which is easier on the tummy.

Just like all infants, those with PKU can begin to start solids as early as 4 months. Although, this is not the case for all. When they start solids depends on when they are truly ready. A lot of families with PKU babies tend to do baby led weaning. It is crucial to keep track of what they are eating, and how much to keep track of their Phe intake.

Toddler

You've officially made it to the toddler stage! This is such an exciting time. Levels will start to become slightly more regular, and you might have a better idea of what their tolerance is. This is where the magic number really starts becoming a way of life. Remember, every child is unique and PKU is not a black and white disease.

By now, you may have heard of Kuvan. This is a medication that is often proscribed to those who have PKU. Although, the age that it is introduced depends on the clinic that your child goes to. Children can start Kuvan as early as 6 months, however, this is uncommon. Typically Kuvan is started when they reach the toddler stage. Not everyone is a "responder", so don't be discouraged if your child happens to not respond to Kuvan. For those that do respond to this medication, they might be able to have a much larger allowance of Phe, or their allowance might increase slightly. Every child responds differently, but Kuvan can be very beneficial in increasing their tolerance.

If your child's levels seem to increase suddenly, there could be many causes for this happening. It could be due to a growth spurt, becoming more active, or simply not getting enough calories. By this time in your child's life, they may be becoming more picky toward the food and formula they are consuming. Most toddlers transition from Periflex Early Years to Periflex Junior Plus. Some toddlers reach a stage where they do not want to consume the amount of formula that they are supposed to in a 24 hour period. If this is something you're going through, consider speaking to your clinic about trying GMP-Vanilla. Nutricia will often send many samples of alternative formulas if you call and ask,

Just remember that you are doing amazing and don't feel discouraged if your toddler isn't eating all of the foods you make. Sometimes just getting them to finish their french fries is a PKU win for the day. I'm sure you know what I mean.

Preschool & Pre-K

You're probably feeling many different emotions during this time in your child's life. They've made it to preschool! This is a huge milestone and it's an amazing accomplishment. However, you're probably worried too. Worried about whether or not their teacher will understand their specific and crucial dietary needs. Worried that they will feel left out during snack times. You might even be worried that they will end up eating snacks from their classmates that are not PKU friendly. Perhaps you're worried that their peers might treat them differently if they know that they have dietary restrictions. I'm sure so many thoughts are racing through your mind, and that is completely justified and understandable.

The good news is, most clinics will call the schools for you to explain everything in detail. They will also speak with the nurse to inform them of any medications your child might be taken, most likely Kuvan. Your clinic will also discuss the spot checks that may need to be done during their school day. If your clinic offers to do this, take advantage of it. They will make sure the school is completely informed and prepared for your child's needs.