Skip to main content

Toughest Kid Around

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 medication that is available to PKU patients that has been proven to increase the tolerance of people who respond to it. The down side is that the company that created it has the patent for another 5ish years and in order to recoup their R&D money loss they have had to set the price at an unreachable level - approx. $100,000 a year per person. 
Dr. S mentioned the drug trial for Luke and said that the reason it is on hold is that we simply do not have a drug plan that would cover this cost. Which is a crappy feeling, knowing there is a medication out there that could be LIFE CHANGING for him, but it is financially impossible. 
Today Dr. S informed us that in some cases the drug company is paying for people to be on the medication... say what?!? The reason they are doing this is because the provincial government in Alberta here is in talks with the drug company to cover the medication for PKU patients. 

I am not 100% sure when we will hear back about if/when this will happen but fingers crossed!

Why is Luke the toughest kid around?
This little man was so well behaved throughout the 2 hour appointment and then on top of that he went to the lab and had 7 vials of blood drawn - did not even cry! So brave.

 Thank you for taking the time to read this update comments and questions are always welcome<3
Labels:

Comments

Post a Comment

Popular posts from this blog

Food Centered Holidays & PKU

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 reluct...
Post a Comment
Read more

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 proce...
Post a Comment
Read more