Happy Valentine’s Day everyone!!

Today I thought I would make a post about some Indescrepencies In the PKU world.  It seems that many countries still have alot of differences when it comes to diet, treatment, and rules.  Many places it was ok to come off diet at 7 years of age. It was only recently with in the last 10-20 years that the idea of “diet for life” started to become accepted around the world.  Scientists use to think that the brain stopped developing at this age and therefore the effects of PHE levels could not be negative on development. However they still did recommend women who where trying to become pregnant returned to diet for the benift to there unborn baby.  We now know that PKU is not curable, only treatable and you cannot grow out of it, there is no “safe” age.  Adults and youth as well as children suffer from high levels and damage to the brain. They can still suffer from all side effects as well as depression and anxiety  tremors, head aches, low attention span, and unablitity to stay focused.  Many Adults that I have spoken to who suffer from high levels or who where taken of diet are not reliant on the government as they are unable to manage there health, there symptoms. They have a poor quality of life and un able to sustain jobs, and healthy relationships. Every part of their lives are effected.

Diet for life is not the only discrepancy as well.  Blood levels and when to take them are also different around the world.  In Canada our range is 2-6 as children and 2-10 as adults. 2-4 for maternal PKU.  Some people are told 2-6 at any age and some measure differently. There range is 120-600 for adults, and 120-.360 for children and pregnancy (To convert the systems you either divide or multiply by 60. ) Not only do the values differ but so does when to take a phe level. I was always told that you had to take a level fasting , when you wake up in the morning before eating or drinking. I was told this gives you the true level and that it is also what your level is at its highest. Once you eat or drink the levels are lowered, producing a false low. I was taught to send 3 days of records with my blood test , the 3 days prior to the blood test reflect the average PHE in the level the best. I had use to send a hole weeks worth but my clinic said only the last 3 prior to the level are considered and analysed.  I have spoken to people all over the world and almost every where is different  Some do their levels in the evening before bed, some do them between lunch and dinner.   As a young child my blood was drawn from my foot at the lab, as a child , and youth I had to go to the lab and have my blood drawn from my arm. I rememeber that when I was in school, my mom would have to fight with me to get up early and go to the lab. i would have to take my formula in a thermos and my froot loops in a zip log bag and my mom would have to bribe me to get me to go. I would miss the morning at school and would have to go late. Sometimes she would keep me home from school the hole day and we would make it a special day. I always got stickers or treats for going.  When I turned 13 the clinic switched it to home draws and I had to start learning to take it from my finger with a “pen” or lancet. The first time mom did it , I fainted. Now I still do it at home. I do my levels once a week. The recommended as an adult is once a month. I still get annual draws done at the hospital though.  i personally think If i had the time to still go to the lab I would. I think its much easier getting a blood draw then poking my fingers and trying to fill up the filter paper.  Atleast I get to eat right away!

I have not found many that are the same. it seems to vary between clinics . It really makes one wonder what is really accurate  what way is truly right and why are there differences at all? Should it not be the same every where?

The 3rd biggest difference I have found is again related to diet.  As you know, there are many ways to track phe, Exchanges , Mg of PHE and grams of protein, or the starch diet. however not every where has the same values for food. In the UK fruit and vegetables are free. They are not counted and are unlimited. Here in my province of Canada, everything is tracked, everything has something in it. Unless it is truly protein and PHE free. But we still track it for the calories.  Children and people newer to PKU are taught to measure with a scale as it is more accurate , but I was taught with measuring cups. Though I mostly eye ball my portions any ways  when I am unsure, I still use my measuring cups. I rely on Virginia Schuettes food list book , where some people don’t have aces to the book and use the internet, dietician, or smart phone apps.

Aces to new treatments or low protein products vary , so does clinic  support, policies and rules. I find my dieticians very helpful and supportive to my needs , but in some areas they are lacking as well.

The discrepancies don’t end there either. There are many more but these are a few that I find come up alot. I personally dont understand why it varies country to country or even clinic to clinic. With something so serious and so many side effects you would really think that these aspects would be universal. So even though we have come along way in the treatment and understand of PKU, its obvious we still have along way to come.

What are some Indescrepencies  that you have experainced that I have not listed? I would love to hear from you!