PKU.com Community Discussion Forum What’s the Phe? New To The Group Reply To: New To The Group

#5826
Avatar of Breanna
BreaMarie91
Member

I’m glad I could help. If your daughter is still getting upset it’s perfectly normal. My mother said my whole first year she had a very hard time accepting PKU and fully understanding it. I think I would be more worried if a parent didn’t cry and didn’t get worried about this. It sounds like your both dealing with this the best you can!
I don’t mean to be the bearer of bad news, but I noticed that you said ‘when he is off his phe fre formula.’ The phe free formula or metabolic formula is a life thing as far as I know. I’m 16 and still drink it, so does my sister and many adults I know. Since your grandsons body can’t convert Phe into another amino acid called Tyrosine he’ll have to drink this formula for life to get not only Tyrosine (which is an essential amino acid needed to grow) but for other nutrients aswell. From what I know the diet, formula and blood tests will be something that will follow him for life. But in my eyes that is okay because every year they are coming out with new and better formulas I’m sure that by the time he’s my age or even my sisters age they will have some great tasting formulas. They already do in my opinion, but hopefully they’ll have even better ones.
Keep doing what your doing and hang in there! nBreanna

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