Maternal PKU Series: Camille
We'll be continuing our Maternal PKU Series and hearing from Camille and her story navigating the process.
Thank you all who have been part of this series!
Name? Camille Clark
Where are you from? Sandpoint Idaho
What’s your tolerance? 350 mg Have you always been on diet: I have always been on diet in some form. In the times where I wasn’t drinking formula, I was trying to keep my levels lower by eating lower protein foods. The hardest time in my life was after I was done being pregnant. It was such a shock going from so restricted to not restricted very much at all. And it was hard for me to go back down to my regular tolerance. But I’ve never had meat and I am allergic to real cheese.
What formula are you on? Currently Sphere20. While I was pregnant, I took phenylade essentials and I had some unflavored supplements that added a higher protein equivalent
Do you take any other medication for PKU like Kuvan or Palynziq? I wasn’t a responder to Kuvan and I am too far from my clinic to take Palynziq.
Can you explain in your own words what maternal PKU is? Maternal PKU is a female who has PKU going through the stages of pregnancy. Pre-con, pregnancy and after
How far before conception did you have to start preparing to have kids? I went through pre con about a year prior to getting pregnant. My levels fluctuated a bit.
What did that preparation look like? Tracking my food and being able to understand what certain foods did to tweak my levels.
What was the hardest part about the preparation? Knowing that you’re not actually pregnant and you still have to try to maintain low levels. Once you get pregnant, it’s a million times easier. You know that every price of food that you put in your mouth directly affects your child’s whole life.
Was it easy to keep your levels down during pregnancy? Hard? Why? Easy. See above. I weighed every piece of food that entered my body.
Tell us about your children! Do they have PKU? My son is Finn Edward Jason Clark. He is a very brilliant 3 year old boy who does not have pku. He was born 3 lbs 14 oz and over a month early, but he overcame all kinds of odds and is very smart.
What was the most nerve wracking part of your experience and how did you overcome it? Fighting with PKU and being borderline for gestational diabetes. I honestly didn’t know what to eat and I just cried because I didn’t know what to do. I had PKU under control. Diabetes was entirely different. Then we had some complications with the pregnancy which led to his early arrival.
What foods did you crave if any during your pregnancy? Clementines and avocados and spicy food
Do you have any advice for PKU people wanting to become moms? It’s hard, but you’ll do what you have to do, because in the end, it’s all worth it. I would do it a million times over because my son is the love of my life. Don’t give up.