When my daughter was diagnosed at 5 days, we had our first appt. with our CF center 3 days later. They started her on enzymes that day. The next appt. (2 weeks later) included blood tests to see her vitamin levels and to verify that her pancreas was insufficient, which it is. However, I was told that her vitamin levels were good and that she would not need to take the Adek vitamins at this time and just buy her some Poly-Vi-Sol vitamins at Wal-Mart. They haven't checked those vitamin levels since (she is now 4 1/2 months). Should they be? I also read people referring to CPTs all of the time on this forum. There has been no mention of CPTs to me at the CF center and I'm wondering why. I understand that she is very young still, but I have read of child the same age or younger that are having chest therapy (i.e. vest). I don't want to be the mom that lets something slip through the cracks because I have very little experience in dealing with CF. Can anyone explain to me why they believe none of this has been mentioned to me yet? (I have only read of CPTs in books and here). Should I be demanding that something more be done with my daughter?
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Mom of a BEAUTIFUL baby girl named KALE w/cf (homozygous delta f508)
& a BEAUTIFUL daughter named Ashlyn no cf
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Mom of a BEAUTIFUL baby girl named KALE w/cf (homozygous delta f508)
& a BEAUTIFUL daughter named Ashlyn no cf