Yesterday, April 24th, we had Luke's solid appointment at the Stollery Children's Hospital in Edmonton at 8:30 am (early for getting everyone presentable and packed up!). We got to meet the most recent addition to the Metabolic Dietitian team, Sydney, who I have been emailing and chatting with for awhile now but hadn't met in person. She is as much as a sweetheart in person as she sounds on the phone.
We started off by talking about Luke's growth which has been spot on (woo!!) and he is gaining weight at just the right pace. Also he has maintained safe zone levels!!! Good job Lucas!
Then we got into the learning aspect of our visit. Basically next time you see me say "count protein" you need to throw something at me because there are varying amounts of phenylalanine (phe) in different kinds of proteins. Below is a break down of 1 gram of protein in the 3 different protein types:
Grains, Milk & Meats there is 50mg of phe in 1 gram of protein
Fruit there is 26mg of phe in 1 gram of protein
Vegetables there is 33mg of phe in 1 gram of protein
So as you can see there is a reason why grains, dairy, legumes, nuts and meat is a NO GO for Lucas.
We are very grateful for a website called How Much Phe because, like it's name states it is a website that we enter a food into and it tells us exactly how much phe an item has! Here are 3 very common food that Lucas will not eat.
On the 3rd line of each of those screen shots you see the mg amount of phe. Keep in mind Lucas' daily amount is 335mg of phe per day. Now I am going to be honest here and tell you I have been struggling a lot with this number because it is confirmation that Lucas is severe PKU, actually he is classified currently as Classical PKU which is the classification for people who have the lowest tolerances.
We started off by talking about Luke's growth which has been spot on (woo!!) and he is gaining weight at just the right pace. Also he has maintained safe zone levels!!! Good job Lucas!
We found out Lucas' phe tolerance is between 320mg and 360mg.
His current average is 335mg of phe a day.
Then we got into the learning aspect of our visit. Basically next time you see me say "count protein" you need to throw something at me because there are varying amounts of phenylalanine (phe) in different kinds of proteins. Below is a break down of 1 gram of protein in the 3 different protein types:
Grains, Milk & Meats there is 50mg of phe in 1 gram of protein
Fruit there is 26mg of phe in 1 gram of protein
Vegetables there is 33mg of phe in 1 gram of protein
So as you can see there is a reason why grains, dairy, legumes, nuts and meat is a NO GO for Lucas.
We are very grateful for a website called How Much Phe because, like it's name states it is a website that we enter a food into and it tells us exactly how much phe an item has! Here are 3 very common food that Lucas will not eat.
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| ONE OREO... who ever only eats one |
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| The size I used is the snack sized bag of Lays Chips |
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| This is for both Twix bars in one package |
So I could go on an on about how this sucks and how I hate that my son will have to be told no when it comes to something as basic as food, and not just junk food, "normal" foods like bread, mayonnaise, and so on and so forth. However I know that there are many many well adjusted children, teenagers and adults living with tolerances the same as Lucas. So I will push past my current hurt and just wait to adjust to the new normal.
What does this mean as we introduce Lucas to solids? We will be using mostly a PKU cereal mixed with breastmilk or a small amount of standard baby cereal mixed with PKU formula. The dietitian was very straight forward and said that by 8 months chances are slim that Lucas will be drinking breastmilk anymore, as the bulk of his phe will be in the form of solid foods. So with this knowledge I have started the process of dropping my pumping, I have a massive stash of milk in the freezer to see him through to then.
I will be doing a couple of days ahead where I measure MY phe intake in a day, just to show a comparison of how much an average person eats without even realizing it and it will be really good practice for me!
I leave you with a photo of Lucas sitting in his high chair all happy, as he tends to be. He is the greatest gift and I thank God for him every day. This is just part of the adventure and it will get easier everyday.
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