Skip to main content

Quick Facts

Hey all!!

First a small update on Lucas: we still do not have his phe levels balanced out but we are working hard with the dietitians to get past this current growth spurt! I have a feeling, call it Mommy instinct, that his next levels we get back on Tuesday will look much better.

But I wanted to drop some quick facts about PKU that people have asked me recently. I love when people ask me about Lucas' current levels and ask me PKU questions so don't be embarrassed or worried about asking me anything about it!!!


  • Luke will never out grow his PKU
  • We may decide to try one of the current drug options in a few years to improve how much food he can eat but it is not something that is cured (yet......)
  • Everything Luke eats and drinks must be recorded and counted in a daily diary
  • Some foods are very low phe naturally (apples, grapes, pears, and more) so he can eat a lot more of them then some foods that are higher (potatoes, peas, cereals) and some processed foods that are not so good for us he can count as free - like pop that is not diet, some frozen treats, some candies, etc...
  • I have to plan each days estimate value so I know about how much each meal to feed him and then keep track though out the day
  • He has gone from a tolerance of ~330mg/day to his current ~550mg/day (however this could go back down) 

An example of 550mg of phe
(Luke's WHOLE DAY) would be one small bowl of cheerios floating in one cup of milk.


Well Little Man is 8 months old today and he is growing and changing everyday it seems. Next up for him is crawling (not far away now) and maybe these darned teeth of his will decide to finally come though!!

Love you all & hope your summer is fantastic!

Comments

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...

Drug Trial

As 2016 is coming to a close I am very much looking forward to the very exciting things that the new year will bring our family. One of the big things we are looking forward to is Lucas doing a drug trail with a medication called KUVAN. What is KUVAN & why should we try it? (much of this is copied from the http://www.kuvan.com website)  This medication trial offers us the chance to see if Lucas is a responder to KUVAN. KUVAN is a form of the cofactor (or helper) BH4 that already naturally exists in your body. In people who respond to treatment with KUVAN, it works in the body just like BH4 does to help stimulate residual PAH enzyme activity to convert Phe to tyrosine and lower blood Phe levels. KUVAN has been prescribed along with a low–Phe diet to lower blood Phe levels in many people with PKU of all ages and types In many people with PKU, KUVAN increases the activity of the PAH enzyme that isn’t working properly. In other words, the PAH enzyme that isn’t working “wakes up” a...

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.