Where to even start...
Since July we have been challenging Luke's daily phe intake to reach the maximum his body is able to process, and when we hit that number we were going to trial him on the medication Kuvan. We have had the medication since the start of August and the dietitians had said it would likely take a week or two to find Luke's max... Well fast forward to the end of last week and we are still not there yet!
In July, Luke was in-taking around 17 grams of protein a day (860mg of phe) which was an amount we had become accustomed to, it meant he had a bit of freedom when it came to having gluten-free breads or muffins instead of PKU specific ones, it meant a Kinder Surprise egg every now and then wasn't out of the question, but we still were working with much less protein then a child on a normal diet. When we initially started Luke on solid foods (all the way back in 2015) he was on an intake of 7 grams of protein a day (350mg of phe), so we already felt like we had moved up a long way since that initial number.
The past 3.5 months have been constant finger pokes & blood spots, and constant upping of Luke's phe. This has all been very closely monitored and we have been blown away by what we have learned so far.
Where is he now?
As of the end of last week Luke was at a whopping 29.2 grams of protein a day! That is 1460mg of phe! This to us is somewhere we never thought we would see Luke's tolerance, and it has opened up so many options for him when it comes to food choices!
This does not mean that Luke does not have PKU, but if your mind went there for a minute don't worry, I think all of our minds go there when we consider just how much more protein he can have than most with PKU.
How do we know he has PKU and it wasn't a false positive at birth? Because his blood phe levels are above 80 or 90. A person who does not have PKU will not have a blood phe level over 90 no matter what amount of protein they consume in a day since our enzymes are efficient in breaking down the phe. Luke's blood phe levels remain between 150-250 most of the time, with some variability on the low end.
Going forward we will be continuing to challenge Luke's tolerance, as well as introduce many foods we had previously avoided him trying for fear his tolerance wouldn't allow him to have much of these foods. Things like regular breads, pastas, some limited quantities of regular cheese, peanut butter, egg, and some things that vegetarians would use as meat replacements.
The amount of pressure this takes off us when it comes to what is dangerous for him to eat, what could potentially spike his levels, and also makes it more simple to feed him when we are out and about.
We look forward to the months ahead as we continue to explore his tolerance as well as introduce him to a new variety of foods.
As always, thank you for taking the time to read about Luke's PKU and his journey!
Since July we have been challenging Luke's daily phe intake to reach the maximum his body is able to process, and when we hit that number we were going to trial him on the medication Kuvan. We have had the medication since the start of August and the dietitians had said it would likely take a week or two to find Luke's max... Well fast forward to the end of last week and we are still not there yet!
In July, Luke was in-taking around 17 grams of protein a day (860mg of phe) which was an amount we had become accustomed to, it meant he had a bit of freedom when it came to having gluten-free breads or muffins instead of PKU specific ones, it meant a Kinder Surprise egg every now and then wasn't out of the question, but we still were working with much less protein then a child on a normal diet. When we initially started Luke on solid foods (all the way back in 2015) he was on an intake of 7 grams of protein a day (350mg of phe), so we already felt like we had moved up a long way since that initial number.
The past 3.5 months have been constant finger pokes & blood spots, and constant upping of Luke's phe. This has all been very closely monitored and we have been blown away by what we have learned so far.
Where is he now?
As of the end of last week Luke was at a whopping 29.2 grams of protein a day! That is 1460mg of phe! This to us is somewhere we never thought we would see Luke's tolerance, and it has opened up so many options for him when it comes to food choices!
This does not mean that Luke does not have PKU, but if your mind went there for a minute don't worry, I think all of our minds go there when we consider just how much more protein he can have than most with PKU.
How do we know he has PKU and it wasn't a false positive at birth? Because his blood phe levels are above 80 or 90. A person who does not have PKU will not have a blood phe level over 90 no matter what amount of protein they consume in a day since our enzymes are efficient in breaking down the phe. Luke's blood phe levels remain between 150-250 most of the time, with some variability on the low end.
Going forward we will be continuing to challenge Luke's tolerance, as well as introduce many foods we had previously avoided him trying for fear his tolerance wouldn't allow him to have much of these foods. Things like regular breads, pastas, some limited quantities of regular cheese, peanut butter, egg, and some things that vegetarians would use as meat replacements.
The amount of pressure this takes off us when it comes to what is dangerous for him to eat, what could potentially spike his levels, and also makes it more simple to feed him when we are out and about.
We look forward to the months ahead as we continue to explore his tolerance as well as introduce him to a new variety of foods.
As always, thank you for taking the time to read about Luke's PKU and his journey!
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