Parenting PKU

Obviously we are very open about Luke's PKU and we do this in the hopes that this will make it natural for Luke to hear about his condition. To me a very important thing is that he knows he does not need to hide it, ever. We have talked about high phe/low phe foods since we found out about his PKU and especially since Luke started eating solid food.  It is something that was encouraged by his metabolic team and it really made sense to us. Plus with  me running a day home and other children around, I hoped they too would understand the importance of being careful with food. Well it seems that this method was very effective as our smart little three year old knows to ask if the food is high phe (red light) or low phe (green light), and also he knows many of the foods that are very high. Some of the things he says are: "Oh no, that is high phe and will hurt my brain" "Is this my PKU cheese or high phe cheese?" "Is this a red light Mommy?" &quo

Anger & Frustration Well the good news I posted about here  was that we were thrilled to find out that Luke's food was now going to be fully covered by Alberta Health Services. I placed a large-ish order of new foods for Luke but held myself back from "going crazy" with the order. Turns out this was a mistake.  The foods that were listed were never meant to be free... meaning there never was a change in coverage. I am not 100% sure on the details as to how this mistake happened, it sounds like an error with the metabolic food distributor.  They have not sent an invoice for the cost of the foods I ordered, and honestly I cannot imagine how they could. However foods that are very pricey are ones that Lucas loves, including the animal pasta that we tried for the first time from the free order.  I have known of this for a awhile now, as the website was corrected not long after I received our order. I struggled to find a way to post about this in a way that did not

Good News #1 The first bit of good news came via a phone call from Lucas' dietitians this week letting me know that we had the green light to starting challenging his tolerance again. I say "again" because awhile back we challenged it and eventually reached an intake high enough to balance his blood phe numbers and his tyrosine levels. Luke has been in the safe zone phe level-wise, it is just his tyrosine numbers seem to stay low and tends to drop off easily. They, the dietitians, say the low tyrosine levels leads them to think we are not fully utilizing his natural protein intake, meaning if we give him a higher tolerance then his enzyme activity should keep his phe numbers safe but also show us an increase in his tyrosine levels because his body will now be making more by breaking down the phe.  So long story short  we are pushing his tolerance which means higher amounts of natural protein (phe). Now it is not like we are adding meat or cheese or anything like t

Today was such a busy but great day for the three of us. Luke, Jeff and I headed to the Stollery at 9am to meet with his metabolic team.  The appointment  The dietitians always start things off with weighing and measuring Luke to see how well he is growing and if you have been following the blog you may know Luke has kinda been a bit light on the scale. However today we were happy to find out he is doing really well both height and weight wise! He is in the 50th percentile for both!! Then we talked about his diet some, touched on his formula intake and got the green light to try him with a new juice type formula (which will be good for summer holidays) Then in came Dr. S, she is his pediatrician/metabolic doctor. I love this lady! She is great at offering guidance and suggestions that will make things easier for us as he gets older, things like having him help us make his formula, help us weigh and measure his foods, those sorts of things. The exciting news Kuvan  is a

As another "food centered" holiday approaches I can already feel my mind racing. Trying to think of ways to make Luke feel like he has choices at dinners and that he can feel included in all the Easter goodies. Chocolate is high phe, so I will be going to Micheals this weekend to get some chocolate molds to fill with his low-phe chocolate, I will bring some to dinners and some will be for his Easter basket. I am also going to try my hand at his special buns - he is a carbohydrate lover like his Mommy so I know that I will likely have success having him eat those.  I don't want to make it sound like we don't have marvelous families because we do! Our families understand, they always help us include Luke friendly foods and want to make the holidays special for him. We are truly blessed to both have supportive parents and siblings AND extended family who love to shower Luke with love & fun!  Luke is not trusting when it comes to food, this makes him VERY relucta

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! 

I think I have mentioned before that a HUGE  part of Luke's diet & phe management is his formula. It is like a PKU "protein shake" in that it has all the parts of protein that he needs but that he misses out on with his restricted diet. He has a set amount of formula that he must  drink in a day and if he goes a little over on drinking extra then that is alright. It has zero phe in it so will not cause him to be over his phe intake, in fact it will help him feel more full if he has eaten his days worth of phe and needs a bit more to fill his belly. When we switched over from the infant formula to the new, more age-appropriate, formula I worried so much about Luke rejecting the new one. I have read so many posts on the Facebook group about kids refusing to switch over, of parents stressing as their kids went days without drinking any formula and I was so worried. It's a big fear of mine for Luke to stop drinking his formula. Another situation I read a lot about