I have been meaning for a while to write a post dedicated to the amazing new website “howmuchphe.org” but havent been quit able to find the right words.

Many moons ago I wrote a blog post describing Virginia Schuettes PKU Food list binder as the holy bible for PKU. Now I can say, how much phe, which is essentially an online version of the food list binder is the holy grail!

As many of my regular readers know, Prior to becoming pregnant, I was fairly liberal with my diet. I did not really eat things I could not eat. I didn’t cheat with meat or high protein foods. But i was not exactly strict.

I “eyeballed” my portions and measurements. I used rough ” cup ” serving sizes and did not use my scale. I did not keep a food log or write down in such details what I was eating day to day.

I did however eat things like Rice, Avocado sushi, yam sushi, vegetable sushi, hash browns, potatoes, corn, and sometimes white wonder bread as toast. I even tried maple brown sugar oatmeal a few times.

Over the years I tried numerous times to rein in my eating habits, either on a health kick to lose weight , or attempt the preconception diet so i can prove to cole that I could do it at all. I used the food list book and a trusty old notebook.

Since becoming pregnant I bought a new notebook and began tracking immediately after that first positive pregnancy test.  i had the adobe digital additions copy of the latest food list but had not been able to afford the annual cost of how much phe yet. Prior to becoming pregnant i saw no need to justify paying for it since I knew i would not use it as its attended or as often to justify the price.  As soon as I had a little extra cash after becoming pregnant i went and got  a pre paid credit card and signed up as soon as I could.

At first i was using it just to look up the nutritional information such as phe and calories to record the values in my notebook. I had really forgotten what the mg of phe was for the things i was eating. I feel like these past few months I have been learning the whole diet all over again. Talk about Crash course. All of a sudden I was having to do math again, hitting my targets every day. Not to high and not to low. Balancing calories and PHe together was a new learning lesson for me as well.   Changing portion sizes to fit the phe i needed. IT is a juggling act and I have a newfound appreciation for parents who do this for their children every single day.  It has been adjustment for me. I am so use to eating whatever I want as long as it was low protein so my portion sizes were quite large. I remember in the first trimester being worried id be hungry when i saw what the real portion sizes were but morning sickness helped with that .

The first few weeks of relearning the diet where a lot less intimidating thanks to how much phe and the facebook community. I spent days learning the ins and outs of the site. I feel in love with how easy it was to navigate and use. i only wished it was more like myfitnesspal where you can record right on the site.. only to discovered a few weeks later that was in the works! I jumped at the chance to be apart of the beta testing group.  It was another adjustment to give up my notebook, though I continued to use it during the beta testing just to be sure.  Since how much phe has gone live with the tracking changes My life has been so much easier!!

Now I can keep a daily log of my food, record my PHE levels, my weight, height and notes. I can also export it to my email and forward it directly to my clinic. I have it saved as a web app on all my devices and set to automatically logged in. So as long as I have wifi I can access it any time. I can use my data on my phone and access it when I am out to. This has come in super handy at the grocery store when I am looking up nutritional info on a new food or something I want to try.

How much phe is seriously user friendly and has additon of the fb group for added support and direct contact to Sarah for trouble shooting. The colours are very easy on the eyes and the lay out really flows.

When you login you have the main search page , after you have enabled tracking your site opens up to your favorites page. So foods you use frequently are right there.  When you open up the food you see the name of the food and the nutritional info down the main page. On the Right you can calculate by weight, portion and PHE.  Enter in your prefered method. I have used all of them. I usually calculated by grams of weight but at the end of the day when i am planning my dinner ahead and I have so many points left that i need to make up, I will choose the food I want and enter in how much PHE i need to eat and it does the math for me. To do the math you use the green  calculator  button. I am so relieved it does the math for you. I really really hate math and am just terrible at it. I have never understood it . It’s a foreign language to me. I don’t even know all my multiplications tables and I never learnt to divide. Admittedly I still count on my fingers or use a calculator and i am never confident that its correct so this feature takes the stress right out for me.

The orange arrows is the refresh button to erase your data and refresh to defult values.

The fork and knife is how you record it to your daily log.

When you log in for the first time you can set up your profile and change your personal settings.  You have the option to track as a parent or caregiver. This is so great for family members especially grandparents. You can have multiple profiles so if you have 1 or more children with PKU you need to track for you can keep them easily separate.

You then choose your default way to calculate, and enter in your daily intake goals. Set how you track your levels  ( mg/dl ) or (mm/L ) , if you are on Kuvan, If you record Tyrsoine levels. The next tab is for diet. Set your PHE target, Calories, and protein equivalent. This is what you see now at the top of your screen every day when you log in. As you record your meals and each food or formula the talley changes and also shows you what remains for that day.

Mostly I just use my favorites but occasionally I come across a food not listed or need to add in extras like tyrosine. So you have a fast track option ( the lightening bolt) This lets you quickly add something if you know the PHE and calories. For me  I use it to enter in my tyrosine.  0 grams protein, 0 calories, 5 grams tyrosine twice a day so this shows my clinic and me that i have already had it or if i missed a day. ( not that I have) I have also used the quick add button to enter in jumbo freezies ( phe free only calories) and becel margarine. In the note section i describe what the quick add is for .

Other features to familiarize yourself with is, the search, settings, about , and account features.  Under the account tab is where you will find a graph of your values. Intake, Blood levels, weight, height , notes and exporting.

To export you simply select the date range you are looking for, and then select the information you want to export . When the file is ready it is emailed to you and then you can save it in document form to your computer, print it off for your records or forward the email to your clinic.

When you get use to it and you use it enough, you will find it is so simple to use. Not at all overwhelming, fast , convenient and takes the stress out of compliance for adults like me.

I highly recommend How much phe to anyone. I really feel it is totally worth the price to and have no issue paying the annual cost. It really is quit small for the big picture. Also it is for a good cause. The funds help continue the hard work of the how much phe team. It helps them produce the site, and also to evaluate foods, research nutritional information and work with companies to get the info and provide it for us.

I think everyone can benefit from using this website , it has seriously impacted my PKU life and has made managing my levels and diet much easier and doable. I had so much fear prior to becoming pregnant about being able to be compliant and diligent and stick to a restricted died, How much phe , I feel has made it totally possible and almost easy. I am fully confident I am doing my very best for me and my baby and that I might not have been so sucessful without this great tool . Seriously every household should subscribe . Specially children and women with PKU.   I am so appreciative and thank you to the How much phe team and producers .  Gracious does not even describe. If I could afford to i’d buy it for all my pku friends who are pregnant or on the preconception diet as I feel it is that important.  I will continue to use this tool for the duration of my pregnancy and breastfeeding and into the future to help stay on diet and healthy.

Thank you How much PHE!  I have read many articles that stress the importance of a multi prong approach to treatment of PKU. The low protein diet / medical foods, Formula, and pharmaceuticals like KUVAN. I think it should be expanded to include how much phe. As the more tools in the tool the box, the easier to manage and achieve optimal quality of life!

IF you are interested in checking it out, please visit the site and http://www.howmuchphe.org and if you have any questions please feel free to ask me . You can also join the Howmuchphe fb group for great support and direct access to the team who runs it. They have very quick responses to!