Diet

Ellie's diet is not like that of a typical 2 year old, and as she grows we will continue to strictly monitor it.  We will also expect others to adhere to this, because her life depends on it.  

I know several other PWS moms have addressed diet on their blogs and FB posts.  I think Ali Shenk said it beautifully and I am paraphrasing and quoting her, diet is something that is personal to each PWS family.  We each do our own research, learn our own child and do what is best for them. "PWS families, or anyone else, please do not take my advice as what is right for your child - you and your child's doctor need to determine that."

Ellie's diet is full of veggies, fruit, protein and good fat.  She does follow a lower carb diet, after consulting our doctors and talking with other parents.  Anecdotal and other evidence suggests that individuals with PWS do not process carbohydrates the same way a typical individual does...their body, instead of using carbohydrates for energy, converts them to fat.  Many parents have noticed that if their child has more carbs, they will tend to be more fatigued/sluggish, a lot crankier, and food seek more.  I have not noticed this really with Ellie, but we have been relatively low carb from the beginning with her.  When she does have carbs, we do things like whole wheat toast, oatmeal, whole wheat noodles, beans, etc.  She also gets carbs in the fruit, veggies, and protein, but it is certainly not as much as bread, noodles and oatmeal would be.  

It is not us just being mean parents...not letting her have cookies, cake, cheese puffs, soda, etc...her body cannot metabolize food like that.  She has not had traditional cake or cookies, and I definitely don't let her eat hand fulls of goldfish and cheerios...she gets about a shot glass full, and that is all.  Luckily, we have great support on Facebook and on the Internet with low-carb recipes, food ideas, and nutritional support.  

Our nutritionist, Melanie Silverman of Feeding Philosophies http://www.feedingphilosophies.com),  has been such a huge blessing to me.  She has walked with me every step of the way with Ellie's diet, because I have been, and will continue to be a nervous wreck about it.  Every meal, and everything about food stresses me out.  What do I feed her?  How much?  What do I tell someone that offers her things she can't have?  How will we go to birthday parties?  How will I respond to individuals that just don't get it?  How will we navigate snack at school?  What do I do if she asks for more?  Will our family and friends really follow our expectations?  

David and I are taking these approaches (now and in the future) regarding diet: 

• We want Ellie to try/eat a variety of good, nutritious foods
• We will not introduce Ellie to things that have to be taken away later
• We will never use food as rewards
• We will help Ellie learn to make good, healthy meal choices as she gets older
• As a family, we will all make good diet choices (this is so hard, especially for me...I am a stress eater in the worst way).
• Once a meal is finished, that is all...no seconds
• We stick to a very scheduled meal structure:  breakfast, snack, lunch, snack, dinner, milk
• Food is plated and put away, as not to distract
• Every meal is eaten at the table

Let me tell you what Ellie enjoys the most right now...

• Eggs
• Avacado
• Hummus
• Sauteed Vegetables
• Raisins
• Cheese
• Almond Milk
• Turkey
• Watermelon
• Cantaloupe
• Strawberries
• Blueberries
• Cottage Cheese

This past Thursday and Friday, I had the awesome opportunity to bring snack to Ellie's class, and "Swap out the Sweets for Ellie."  I sent home a letter to each child's parent explaining PWS and the importance of choosing nutritious options, and why it was so critical to our family.  I took yogurt parfaits, with blueberries, strawberries, and bananas.  I also gave the kids a few "better option cheese puffs."  Most of the kids enjoyed everything, and some did not :-)  Regardless, it was an amazing way to raise awareness for PWS, and for two days, everyone ate exactly what Ellie ate.

I reflect back over the past two years, and I can say with certainty that things have improved with my thoughts about our new normal.  I remember having so much anxiety about Ellie's diet and literally almost had a panic attack in Yogurt Mountain in those early days.  I looked around, and there was food everywhere.  Ice cream easily accessible, chocolate, cherries, sprinkles, nuts, toppings wall to wall.  I remember thinking, "We can never come here again.  Ellie won't be safe.  It would be so incredibly mean to bring her here and tempt her with all this."  And this terrible sense of sadness came over me, grieving the fact that Ellie will not get to experience treats like a typical child does, and won't get to go into Yogurt Mountain and get whatever she wants.  My mind still goes to dark places like that sometimes, but I am choosing to focus on the positive...our family will have "other treats not focused on food," we will be healthier, we will make better diet decisions thanks to Ellie, we enjoy our food more, and we will educate others on PWS and healthy diet, any chance we get!