PKU.com Community Discussion Forum Parent support anyone ever hit 0 phe level? Reply To: anyone ever hit 0 phe level?

#8801
Avatar of carrie
clenk
Member

When we found out the numbers were 30 was a couple of days after the test was taken (we live out of town and the process where we deliver it to our local hospital and then it gets transfered to the children's hosptial for the test is a long one!)  so i don't know if they ever hit 0 – i 'm guessing we'll know next week when we get new numbers. 

We were told to increase the phe intake by 25% (and we did a bit more than that for the first 48 hours). So we shall see what happens next.  During the previous week i followed the amount of phe we'd been using but when she wanted more i just gave her more formula. I didn't realize i should be giving a constant percentage of phe vs formula (63% formula and 37% phe or whatever it is) b/c i thought that even if she was more hungry (we're thinking it was a growth spurt) then that didn't mean she could metabolize more phe in a day- i guess i was wrong. maybe?

THis is such a learning experience and i find myself frusterated/panicked/stressed b/c i 'm learning at the EXPENSE of my poor child!! And when she doesn't share well in kindergarten or fails her calculus test in grade 9 will it be b/c of this week? I just hate feeling responsible and not knowing- will it be ok- have i damaged her- and i won't ever really know- and i'm struggling with that too. It has been just over a month since diagnosis and while we've been pretty good so far( in range- fluctuating in range but in range) i'm realizing how one bad number can really throw everything out of whack. 

sigh……………………………….

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