Skip to main content

Quick Update

Sample packs arrived with new
flavors for Lucas to try!

 Good News

 Luke's phe levels had gone out the top of the safe zone last week, more then this Momma would like! This meant last Friday we adjusted how much phe (protein) Lucas intakes in a day from foods, lowering the amount. This is done so that his body has a chance to stabilize the balance of his enzymes and the amount of phe he can break down effectively. 

 Well the decrease had the desired effect and Luke is once more in the safe zone!! *cue happy dance*

 Now just to get Luke to keep improving on drinking up the full amount of his formula each day! 


Comments

Post a Comment

Popular posts from this blog

Introduction

Hello & thank you for taking the time to find and start reading this blog about our journey as we discover what parenting an infant with PKU means for us. Now most people who we talk to (including a fair amount of medical professionals) have no idea what PKU is or what it means to have this condition.  So let's start by trying to explain PKU to those who don't know what this condition is (just like Jeff and I the day the doctor told us that Lucas had it). The following is information provided by  http://www.canpku.org/  which is the Canadian PKU site. PKU is short for phenylketonuria (pronounced fen'-il-kee'-to-nu'-ria) PKU is a rare, inherited metabolic disease that results in mental retardation and other neurological problems when treatment is not started within the first few weeks of life. (Lucas' condition was caught within the first days of his life and treatment was started the same day) People with PKU are missing an enzyme to brea...
3 comments
Read more

Reality Check

While visiting a doctor's office for a standard procedure for Lucas I had panicked moment when they went to give him Infant Tylenol. I realized I had no clue what medications he would be allowed, only that there was many he would not be able to have due to ingredients that would effect his phe levels. We stopped them from giving it to him and I placed a call into his dietitian to inquire. The Tylenol is fine, as it has no aspartame.  This served as a strong reality check for me that this is something that will happen in his life and I will have to find ways to adapt and make decisions based on the knowledge I have of his condition. This is where again I am thankful for our health care system where I am able to call his clinic and they can help us out.
2 comments
Read more

Lucas' Levels

Lucas went through a growth spurt a week ago and we have learned that this would actually greatly effect his levels. When we met the dietitian she mentioned that things like illness & growth spurts would lead to fluctuations in his phe levels and this was proven true. He went from right in the normal range down to the lower levels of where we would want him to go. Now it isn't life threatening dangerous to dip down in levels but in order for Lucas to continue to grow we had to get the levels back up which was done by adding more breast milk to his diet. This was nice as we were able to leave the breast milk levels high so far and as of Thursday last week we were back in the good range for his phe. Now today, Tuesday, we are back way down. Sigh. It's a bit like a roller-coaster.  Now all we wait for is the green light from Melissa the dietitian to go down to only testing his levels once a week which would mean only one heel poke a week but this will have to...
2 comments
Read more