Community Discussion Forum Parent support Low Levels in CPKU Preemies HELP PLEASE Reply To: Low Levels in CPKU Preemies HELP PLEASE

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So I kind of have good news…Tucks levels went to 4.5 or 270. That’s good because they are in safe range. Doc said that because of the severity of his PKU his levels can go all the way up to 10 without being worried becuase it will not be easy to maintain low levels and I guess we are headed to the other end of the spectrum now. I’m not sure what is better though, low or high. I would rather have median.
How are your little ones levels? We check ours once a week, do you do the same? It is nice to be able to follow someone else that can completely understand what I am feeling it makes me feel not alone. Where are you from by the way? I don’t remember if you told me. I’m from California, southern. As many people as there are out here, I have yet to meet another person with PKU, besides the mom that my clinic set me up with. She lives 45 minutes away…Did you see the picture of my boys? I finally got one up. Let me know what’s going on in your PKU world, and update.

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