Two years. It has already been two years since my best friend delivered a beautiful set of triplets. As you can imagine, a triplet pregnancy is no easy feat. Looking back on her journey, I understand so much more in hindsight. Our friendship strengthened more than I knew during the time between when she found a positive pregnancy test, to discover there were three, to twelve weeks in the hospital and finally, three little miracle babies born at 31.5 weeks. I knew Lindsey would need support after the triplet’s birth, but I never knew I would need and learn so much from three tiny humans.
Lindsey had to dig even deeper for strength when she received news that Elliot was diagnosed with Prader-Willi syndrome at three weeks old. Prader-Willi Syndrome (PWS) is a genetic disease that is characterized by low muscle tone, problems feeding, slow growth and delayed development. This disease is very complex, but one of its most distinctive traits is between the ages of two and eight, children with PWS develop an insatiable appetite. This disease is so complex that Elliot is under the care of a Prader-Willi specialist in Florida. (He currently also sees 13 additional physicians.) A child with PWS must follow a very controlled diet, usually on the Paleo spectrum, or obesity and sometimes type 2 diabetes, just to name a few, develop.
The Paleo Diet focuses on fresh fruits and vegetables, high-quality lean meats and fish and healthy fats from nuts, seeds and vegetable-based oils like olive oil, coconut oil, and avocado oil. High-carbohydrate, high-glycemic foods including grains, both unprocessed and processed, desserts, chips, and dairy are excluded from the Paleo diet. Insulin levels remain consistent, and energy crashes are less likely, therefore helping maintain energy levels, improving cognitive function and increasing metabolism by building and maintaining muscle mass.
Elliot eats only whole foods. Healthy fats and protein are essential and make up the majority of his diet. He does not consume any added sugar, preservatives or processed foods (including baby food), and his carbohydrates are closely monitored. Lindsey has cooked fresh, homemade meals for her children from the very beginning. Elliot eats three meals and two snacks and eats at the same time each day.
Many of us typically think that we follow a healthy diet, but I guarantee if you think of your birthday, Halloween, Thanksgiving or even Christmas, your first thought is cake, candy or dessert. Many children and adults cannot think this way. For children with PWS, food allergies and many other diseases, holidays and special occasions cannot revolve around food. There is no “it’s a holiday,” or “it’s ok to have just one.”
I am sure the first thought of many people is to feel sorry for Elliot, his sisters and anyone else who cannot celebrate a “normal” holiday. But when did celebrating a “normal holiday” turn into eating a large amount of candy and gaining five to ten pounds? (I am pretty sure the Pilgrims did not consume the on average 4,500 calories consumed on Thanksgiving today.) The more I think about it, Elliot should feel sorry for us.
Lindsey, as well as many other moms, friends, and neighbors, are advocating for children with food allergies or special diets like Elliot’s by participating in the Teal Pumpkin Project. Instead of passing out candy this Halloween, she handed out non-food alternatives like vampire teeth, sticky hands, pencils, and small puzzles. By placing a teal-colored pumpkin outside her door, this ensured other parents that non-food items were available.
Lindsey and her family still celebrate every holiday. Thanksgiving dinner still happens. After dinner, the table is cleared quickly, and family time including games and conversation is highlighted. Christmas still includes opening presents and playing with cousins.
Lindsey has spent a great deal of time over the last two years educating herself, family and friends (including constant questions and conversation with this friend) on their new eating routine, changes in supplements and doctor’s appointments. In the two years that Hannah, Gwendolyn, and Elliot have blessed this earth, I have learned more from them than they have learned from me. These three children are full of love, sass, attitude, and let me tell you they can scream, but they are also educating many people every day on acceptance, celebration and truly recognizing the meaning behind holidays and why we celebrate them.
If you or your children suffer from food allergies and sensitivities or struggle with following a specialized diet, please contact me at the Couri Center as I specialize in helping adults and children develop easy-to-follow diets that meet all necessary dietary requirements.
It’s time we start celebrating our differences and coming together to celebrate holidays and special occasions. Food sensitivities, allergies, and food restrictions are very common. If you feel as though you are experiencing negative symptoms from food, the Couri Center would love to help you find health and balance through food sensitivity testing. You are not alone.
To learn more about Prader-Willi Syndrome and the Teal Pumpkin Project, please visit pwsausa.org and foodallergy.org. To learn more about the Paleo Diet visit thepaleodiet.com or schedule an appointment with Leslie at (309)692-6838.