Attitude · Blood Levels · Diet Compliance · Inspiration/motivation · Living with PKU · Promotion/Awareness · Recipes

Tiffany’s Story

Going off diet, getting back on, and why she’s staying there

For my first guest post, I am happy to share the inspiring story of Tiffany Partridge. Thank you so much Tiffany for being willing to share! Here is her story in her own words:

Tiff01
“About a year and a half ago my husband and I decided we were ready to have kids. I knew what this meant for my PKU…”

As far back as I can remember I knew I had PKU and I knew it meant I could not eat certain things. I didn’t really start to understand the details of it until I got older, but I knew enough to know I had something that is pretty rare. As a little kid, I loved the attention that came with explaining what I had. It wasn’t until I got into Jr. High that I no longer wanted the attention for being different, I just wanted to fit in.

The first time I  wished I didn’t have PKU was my first year in Jr. High. I went to a week long summer camp with my church. Going away for a week meant packing formula, and special adjustments to the menu at meal times. Every meal there were questions about what I was drinking and why. My friends would say, it was unfair I got to have something different. They wanted it too. I wanted to just crawl under the table.

Every kid has something they are insecure about, for me it was how thin I was and my PKU. Kids at school would see my lunches and notice no meat, no cheese. If I ever had pizza all the toppings came off. This would illicit comments of “why don’t you eat something” or “no wonder you are so skinny, look at what you eat.” Most of these coming from my closest friends. I think this is where going off diet began.

It wasn’t ever a clear decision I made. I never thought, “Thats it, I am done with this.” It started in small steps. I had recently switched from powder formula to capsules and the amount of pills were overwhelming. I would slowly go from taking them all, to most, to some and eventually to none. I would get food that had cheese or meat and not try very hard to pick it off. I wouldn’t pay much attention to how much bread or grains I was taking in in a day. Before I knew it I never took any formula and ate anything I wanted aside from meat. I tried at various times to get back on diet, but I lacked the motivation, and the convenience of not being on diet made it too difficult.

About a year and a half ago my husband and I decided we were ready to have kids. I knew what this meant for my PKU. I would have to be perfect on my diet for a few months before and during the entire pregnancy. This made me very anxious. I had never been responsible for my diet on my own. By the time I was taking over control of my diet, I went off. I made and appointment with a dietician.

At the appointment we picked out a couple new formulas for me to be on, and discussed getting back on diet. We picked out two formulas. A premixed one (vitaflo purple pku coolers) for me to take to work with me, and a powder (phenylade essentials) to have at home. I was given a list of websites to get recipes and purchase extra convenience foods.

The first week was the most difficult. I was very strict on my diet but I was unsure still if I was doing it right. I wouldn’t know until my first blood test came back. Another side effect I wasn’t anticipating was how full I felt after going back on my formula. I had almost no appetite the first week. I suppose looking back it makes sense, my body had gotten very little nutrition in the 10 years I was off diet, and now it was getting everything it needed. My first blood test came back at 0.3mg/dl. I was so happy! I was doing it right, and on top of that my tolerance had gone up since I was last on diet.

Over the next three months I continued to give perfect blood tests and was told by the dietician I showed excellent control and she felt confident I was ready to try for a baby. I found I went from being able to take in 300mg daily as a kid to 575mg now and still have a level around 3. So much more freedom! I think two big things played a role in my success at getting back on diet: My incredible desire and focus on wanting a child, and my love of cooking. I was able to take my love of cooking regular foods and adapt my favorite recipes to lower protein ones.

Five months after going on diet I found out I was pregnant. I had been on diet as if I was pregnant all along, but now was the real thing. I was so excited. I gave blood tests every week of my 9 months pregnant and never had a level over the recommended 6.0 mg/dl, except for one at 6.3 when I was sick. As soon as I started feeling sick I dropped my phe intake 100mg, since I know being sick can spike levels. I am so glad I did, since I still had a high level even after that. My main problem in pregnancy were low levels. Just about every week of my pregnancy my protein needs continued to go up. I ended up needing to take in 1600mg (or 32g) of protien a day.   I was eating things I had eaten off diet, only now guilt free! I loved trying higher protein foods and it became necessary now as I had so little room to take in large amounts of lower protein foods.  On May 15th 2013 our daughter Emma was born. She was 6 lb 11 oz and 18.5 inches long.  Absolutely perfect and healthy!

"My incredible desire and focus on wanting a child" played a key role in my success
“My incredible desire and focus on wanting a child” played a key role in my success

After going back on diet I felt better, physically and emotionally. I had no idea how bad I had been feeling until I changed it. Being off diet effects every person with PKU differently. My issues were mostly emotionally. Looking back I realized how bad off I really was. I had a lot of anxiety. I second guessed everything I did, felt insecure about myself and personal relationships, and felt irritable a lot of the time. I realized I had and almost insatiable appetite. Being back on diet I felt confident and secure and no longer felt the need to munch all the time.  After going back on my diet I lost 25 pounds, prior to my pregnancy that is. I credit this to my body getting the nutrition it needed, finally. I was in a fairly active job then also but the weight loss did not start until I was back on diet.

My daughter is now four months old. Now that the urgency to be perfect is gone, I have relaxed a bit on my diet. For me, I think that is the key to my long term success with PKU. I plan to maintain my levels around 9-10 mg/dl. Some days it is a struggle, but I just try to remind myself of the overwhelming benefits I get from staying on diet. Prior to going back on diet, I did not think “diet for life” was necessary. Now, I could not agree with that more. The difference in how I felt is evidence enough for me.

When I look towards the future in what will make me successful in the long run with PKU, I think of many things, hopefully they can help others struggling to stay on diet.

  • Do not allow yourself to get too hungry-this is when I go for higher protein foods
  • If you are not pregnant and and adult with PKU, don’t worry about being perfect on your diet every day-just most. If staying on diet for you means once a week you need to have one thing you are not supposed to, for example a mocha at a coffee shop. One bad thing, once a week is better than bad things every day. If a small cheat infrequently keeps you going, its better than being off diet. Sometimes we need those little things.
  • Think ahead and plan. If you are going out to dinner plan on saving some extra phe for the meal. If it looks like you have a busy day ahead, try to have some meals prepared the day before or get some premade meals from some low protein food providers. My favorite is Cambrooke
  • If you can tolerate it, eat a lot of the same foods. This makes the counting easier on your brain, especially if you are just starting back on diet again
  • Understand there will be days you want to feel sorry for yourself. Just try to keep in mind how blessed we are. There are so many genetic conditions we could have inherited, how lucky are we that ours just means we have to watch what we eat?

Here are a couple of my favorite websites that helped me a lot:

http://www.cambrookefoods.com — Both for ordering low pro foods and recipes

http://www.cookforlove.org — Recipes. You will need a username and password to see the recipes, but this website was a huge key in my success to getting back on diet. Some of the best tasting low pro recipes. Even non-PKUers like the food!

http://www.pkuperspectives.com/ — Foods. Really good meat substitutes

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2 thoughts on “Tiffany’s Story

  1. Thanks for sharing Tiffany! I really enjoyed reading about your journey. It’s awesome how committed you are to the health and wellbeing of your baby.

  2. Tiffany, I have a question- how many grams of the phenylade essentials powder were you having a day when you first got back on the diet?

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