February Summery :

February 1st :  WEIGHT / 180.2 lbs  PHE Blood Level : 6.0

596. mg/phe 1893 calories

February 2nd : Date night dinner out. Could not count dinner. Before dinner 219 mg/phe and 954 calories

Feb 3rd : 502 mg phe/ 2319 calories

Feb 4th : 527 mg phe / 1614.5 calories

Feb 5th: 252 mg phe / 1750 calories

Feb 6th : 226 mg phe / 1795 calories

Feb 7th -WEIGHT :  180.0 lbs /  339.5 mg phe / 1857 Calories

Feb 8th : 173 mg phe / 1698 calories

Feb 9th :  BLOOD LEVEL : 4.6 / 337 mg phe / 1504 calories

Feb 10th : 225. 5 mg phe / 1555 calories

Feb 11th : 398.5 mg phe / 1261 Calories

Feb 12th : 129 mg phe / 2028 calories

Feb 13th : 743 mg phe / 2135 calories

Feb 14th : WEIGHT : 179.8 / 554.5 mg phe / 1837 Calories

Feb 15th : 406.1 mg phe / 2315 calories

Feb 16th : PHE LEVEL : 7. 3 / 546. 5 mg phe / 2116.5 calories

Feb 17th : 366 mg phe / 1742 Calories

Feb 18th : 358 mg phe  / 1569 calories

Feb 19th : 342 mg phe / 1831 calories

Feb 20th : 367 mg phe / 1831 calories

Feb 21st : 464.5 mg phe / 1604 Calories

Feb 22nd – Feb 28th Values have not been filled in yet as we where away in Victoria and I didnt have time to fill them in.I plan to do that tonight on night shift. I did however continue to write everything down.

We did eat out alot while away and I had sushi On the 22nd, 23rd, and 26th. We ate out twice as well in Victoria and twice in Vancouver. I have done a level today but I am expecting it to be higher.

I also Changed to bettermilk on Feb 18th and I am so happy to be swtiched back. Luckily the bettermilk tastes great again! I am flavouring it with MIO and I have 5 diffrent flavors and they have no PHE, no protein, no calories so I am not adding anything extra.

Another change this month is I was down 9 inches, since January 1st and I started that green smoothie challenge with Young and Raw.

I only did 3 blood tests this month, I missed last Saturday while we where in Vancouver for BC PKU DAY but I did do one today!

I baked twice this month and have increased my fruit and veggies thanks to the smoothie challenge.  This month however I need to work on my water intake again and be working out harder. I am down another 2 inches for the month of february.  My goals this month are to bring my levels down to between 4 and 5 . I would like to work out harder more cardio and continue with the smoothie challenge.

So all in all it was not a bad month. Traveling is always hard and I am working to get back on track as of today. We got back from Victoria yesterday 3 pm. I thought I did badly while away but looking over my records I did not do to badly. even with eating out and sushi I was still around my target of 500 mg phe , and tried to make better choices. My calories where a bit to high . This month I am trying to keep my phe under 400 mg  daily and lower than 1800 calories. Heres hoping!!

So thats all that is new for me today. Hopefully more later! Today being March 1st I have already done my weigh in , updated the PKU Biggest Loser group, done a blood test and set up my new notebook for the next 3 months and had my green smoothie!

Todays weigh in was 179.4 thats only 2.2 down since Jan 1st but 11 inches. Here is wishing for good luck and more success in march!

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!

January 4th : 252 mg phe / 1530 calories

January 5th : 456.5 mg phe  / 2299 calories ( 7.5 mm/dl Blood test result)

January 6th : 745.5 mg phe  / 1619 calories

January 7th : 239.5mg phe / 2836 calories

January 8th : 575 mg phe / 1701 calories

January 9th : 243.5 mg phe / 1895 calories

January 10th : 271.5 mg phe / 1284 calories

January 11th : 392 mg phe / 2066 calories

January 12th : 320 mg phe / 2847 calories ( Blood test Result : 5.6 mm/dl )

January 13th : 328 mg phe / 1726 calories

January 14th : 424.5 mg phe / 1231 calories

January 15th :  693 mg phe / 1735 calories

January 16th : 328 mg phe / 1887 calories

January 17th : 378 mg phe / 1669 calories

January 18th : 265 mg phe / 1612 calories

January 19th : 456.5 mg phe / 1766 calories

January 20th : 276.5 mg phe / 2010 calories

January 21st : 142mg phe /  1966.5 calories ( Blood test done)

January 22nd : 235 mg phe / 2062 calories

January 23rd : 462.5 mg phe / 1647 calories

More to come !!

Feeling pretty good about my progress.