Community Discussion Forum Parent support Levels out of range

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
  • #6848
    Avatar of Susan

    Hi all,
    I’m getting a little frustrated with Lydia’s levels lately. She has not been in range for the last 2 months and she’s only 5 1/2 months old. At first she was back and forth between low and high and the past 3 weeks she’s been too low (between 1.3 and 1.9) I’ve even stopped breastfeeding her and I’m giving her the frozen breastmilk that I have stored up so that I can accurately measure how much milk she’s getting. We have been adjusting the amount of milk to get her within range, but it doesn’t seem to help, and we’ve started cereal this week, but her level is still too low. She did just have 2 teeth pop through and I don’t know if that’s been affecting her level. I guess my question is: Has anyone dealt with a baby being out of range for so long and what are the effects of it? She seems to be developing normally, but it makes me a little nervous with her not having a level within the range for the last 8 weeks. Sorry this is so long. Thanks in advance for any help. nSusan

    Avatar of Sarah

    Hi, nSorry to hear you’ve had a frustrating month. Sometimes Easton has dipped low and because we don’t test every week it’s hard to know how long it’s been low. Maybe she’s going through a growth spurt and she’s using everything she’s puts in her little body. nSounds like you’re doing a good job. Feel free to vent. We’re listening.

    Avatar of Amy

    I’m starting to see this as a trend, although no doctors will tell me it is. My daughter is 2 years old and her levels have always been up and down and up and down. For a while, her levels were in the 0 range, 0.7 0.2 0.8 … all of a sudden she’d spike up to 8.2 within a week. We are still taking weekly levels and it’s just something you have to watch, make sure she has all her phe and keep taking the levels. Patience is key. We understand how u feel.

    Avatar of Breanna

    Could the crazy levels be caused by growth spirts? I’m just wondering because I know when I was little when I was growing a lot was when my levels shot down very low. nBre 16 CPKU

    Avatar of Susan

    It’s good to know that Lydia is not the only one this is happening to. It’s just very frustrating. She still has not had a reading within range, but after being so low, she shot up to 13.2 and then after 2 days of adjusted diet to bring down her level it was below 1! Then after giving her more milk to increase her level it’s still below 1, so we’re trying more milk. Maybe it is growth spurts I don’t know for sure and she’s my 1st with pku so it’s all new to me. But I guess all I can do is to follow the dietician’s orders and watch her grow. She’s sitting unsupported already!! nThanks everyone for your comments. nSusan

Viewing 5 posts - 1 through 5 (of 5 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional