Longwoods Blog

April 13, 2010

Medical Genetics Clinic
University of Alberta Hospital
Attn: Janine Cousineau
Fax: 780-407-1340

I am very upset by these recent changes. The reasons given for the cutbacks are somewhat offending. To criticize the nutritional value of LoPro foods is ridiculous considering the actual “junk” content of so many of the formulas. It’s obvious by the “approved” foods that the feedback from families in the focus group were ignored. What “National Standards” was this change based on? Alberta’s previous availability of foods did not set the Province as superior to the rest, but in line with a more PKU-cultured Province. Now AB can be labeled as having a faulty system. It’s no surprise that shipping CBF products was a concern (and cost) for the Calgary clinic, but Edmonton clinic should’ve been able to set a prime example by direct shipping, eliminating the middle-man and product waste. I am disgusted to think we are following Calgary’s anything but desirable clinical practices.

While raising a child does cost money and time, I think those that make important decisions for our families forget about the daily challenges we face. We have to worry about every meal, what a PKU’er can have and what is on hand. Stress about daycare/school lunches and snacks. Prepare for gatherings as a family or if they get invited out with friends. Let’s not forget about the numerous gadgets we have around our kitchens needed to make these specialty foods. (I am personally on my 3rd breadmaker in 6 years which has only ever been used for Zack’s bread) We run around trying to locate unflavoured Metamucil and other foreign ingredients. The cost of obtaining valuable cookbooks and food lists also adds up quickly. Fruits and vegetables get pricey during “off season” yet we as PKU families are always stocking up on fresh produce to as it’s the one thing we can find in every grocery store.

Years ago, I would pay another mom to make mushroom burgers for Zack as that was one concoction I just couldn’t master no matter how hard I tried, the end result looked more like dried up dog food rather than something one would feed their child. I used to spend countless hours in the kitchen making perogies, but even then it was a challenge for me to ensure their perfection to avoid splitting open while cooking, which happened quite often. Today, Zack enthusiastically asks for Cambrooke Foods’ Pierogis & Camburgers, which has been a life saver in our house. Not to mention the Breakfast Bars, he’s able to grab one on the run, not overloading on PHE by consuming a Nutrigrain Bar, PopTart or similar store bought product. These give him some independence, allowing him to make good PHE choices in his PKU life.

Reviewing the list of foods to now be offered by Edm, I am saddened to see some primary products that we fought for are missing. Maddy’s line of Cake mix, Cookie mix and Blueberry Muffin mix allowed for some ease and freedom from the everyday grind of mastering recipes and techniques. Especially being able to make just a small portion and saving the remainder for last minute special occasions. Unfortunately almond bark can usually only be found in stores around Christmas, if you’re lucky enough to find it, yet PKU Perspectives’ Chocolate & White bark have been removed, deemed not important enough?

More and more store bought products are being made “healthier” for the general public, increasing PHE values considerably. The inability to provide lower PHE food choices for my child as he comes into his own is alarming, and only increases the chance for rebellion. While I am in agreement that during today’s tough economic times, money is tight everywhere and budget cuts can be expected, but to eliminate access to so many of the essential products in a PKUer’s life is intolerable via this method. The cost of ordering LoPro foods from companies is not an option for us, and as a mother, it hurts me to see the look in my son’s eyes to have to tell him so. I wish those making these decisions could actually see my child and know the impact this will have on him.

What kind of society are we becoming when someone that does not live in our world makes choices that affect the health of our children? Because we cannot afford “specialty food”, we are essentially being forced to limit variety in the diet, and opening the door of temptation for higher protein foods.

I welcome the opportunity to discuss how changes can be made to serve as beneficial for both parties (families & the hospital) such as a budget or allowance for families. PKU has come a long way since its discovery; let’s not start reversing the wheels. More children are diagnosed every year, but yet services are being cut.

Regards,

Ciaara Christante, mom to Zackery (PKU)

PS: This letter “borrowed” from: http://www.canpku.org/images/pdf/food_feedback_form_2010.pdf

This entry was posted on Wednesday, August 8th, 2012 at 10:26 am and is filed under Longwoods Online.