Emily Barker

Health & Nutrition Coach
Russell Silver Syndrome

IMG 403.jpgMy son has Russell Silver Syndrome (RSS), a rare genetic growth disorder, which impacts 1:100,000 children. Here is our journey with Colin and overcoming his lack of appetite and picky eating. For more information on RSS, visit www.themagicfoundation.org

Our Journey from G-tube to Cheetos Puffs to Kale Chips….

December 6, 2000 was a very special day. Our long-awaited twins were finally born after almost 3 years of trying to conceive and 13 weeks on bedrest. We knew from the start that something was different about Colin. He was 2-1/2 lbs smaller than his twin sister, had difficulty eating and had severe reflux. He never cried for hunger and for six months we struggled to feed him while doctors tried to determine why he wouldn’t eat or grow. We found he would take a bottle only while sleeping, so hours were spent feeding him and getting him back to sleep only to repeat the process over and over again.

At six months of age our strategy no longer worked and Colin was hospitalized for dehydration and a g-tube was inserted. Life got good again and the daily stress of ensuring he had enough calories and nutrients to grow was relieved. About this time he received a diagnosis of Russell Silver Syndrome and we were introduced to the MAGIC Foundation and Dr. Harbison (a Pediatric Endocrinologist).

Around 18 months old, Colin began feeding therapy. He first was offered Cheetos Cheese Puffs because they were able to dissolve quickly in his mouth. I remember him crying frantically because he didn’t like the cheese “dust” on his fingers when he touched them. Gradually he began to smell them, lick them, put them in his mouth and eventually eat them. This was a huge step in his life which began his path to eating. Colin would continue to go to feeding therapy for 5 years.

At age 4, I remember sitting poolside at the MAGIC Convention and watching Colin eat an entire snack size bag of Doritos. Our family had never seen him eat so much food in one sitting. We watched in awe as he kept eating chip after chip, and he licked the orange dust off this time around! Granted it was pure processed junk food, but it was worth celebrating at the time!

Colin started elementary school eating more foods, but we continued to use the g-tube for nightly feedings because he just didn’t consume enough calories to gain weight. His diet was expanding to “healthy” kid favorites such as chicken nuggets, macaroni & cheese and grilled cheese.

In the first grade, Colin had an issue with hiding food. He was trying to take control over the food he was expected to eat and we found a huge stockpile of food hidden behind our oven. Half sandwiches, fish crackers, cheese sticks, half eaten slices of pizza…it was like we were living with an anorexic. His teacher reported finding snacks stashed in odd places in the classroom. That was a very difficult time, as we had lost our trust in him and had to watch each and every bite he consumed. I thought for sure he’d never get rid of his g-tube.

In the second grade, Colin began eating more of what the family was eating. He was always very picky and would only eat a limited variety of foods, including few vegetables, but gradually he began to eat more healthy foods. The increased appetite brought on by his growth hormone therapy was a big help. He was also very motivated to eat in the cafeteria with the rest of the kids. He had been eating with the school nurse each day.

Day by day, meal by meal, bite by bite, things began to get better. By the summer after second grade, Colin’s appetite had picked up enough that we had not used the g-tube for 6 months and we were able to remove it. Dr. Harbison took it out at our visit with her at the MAGIC Convention. Colin was thrilled and we were so proud of him! I’ll never forget that day and I doubt he will either.

Now, Colin is 12 and he is in the seventh grade. He eats a diet of whole, nutritious foods including a wide variety of vegetables. He loves smoothies and can even be found scarfing down homemade kale chips (they are delicious!). My heart melted one day when I heard him say to his younger and picky-eating brother “You are lucky Mom cooks us such healthy food.”

It has been a long journey from cheetos to nutritious, but here is my advice to make the most of the ride and keep your sanity along the way:

 1)      Practice what you preach - You cannot expect your RSS child to eat healthy food unless he or she sees you doing it. Enough said!

2)      Teach your child about nutrition starting at a young age – We checked out many books from the library and talked about how different foods impact your health. It was important for Colin to understand WHY he had to eat healthy and what the foods did for his body since he didn’t have the natural appetite or instinct for it.

3)      Just keep trying – For years we tried to get Colin to eat peanut butter and avocado, both healthy foods that are also high in fat (good for weight gain). Now at age 11 he will eat both, but it took many, many years to get here. Now beans, that is another story! But I keep trying…

4)      Build on what they do like – Colin has always liked salty foods. He especially likes Asian seasoned foods so we often use tamari to season his meals. You can put together a condiment tray with your child’s favorite seasonings and they can flavor their food how they like it.

5)      Don’t buy what you don’t want them to eat – If you buy processed junk food, they will eat it and fill up on it first. Offer a plate of veggies or fruits with healthy dips like hummus and they will gobble it up.

6)      Follow a 90/10 rule – 90 percent of the food they consume should be healthy and allow 10 percent for treats.

7)      Offer choices – I make a veggie stir fry with 3-5 different veggies so there is something for everyone. Always a veggie I know they will eat, plus something new to try.

8)      Focus on the forest and not the trees – This is easier said than done, but you must look at the big picture of what they are eating during the entire week and not just the individual meal.

9)      Set goals with your child and get them to take ownership – It is their health after all and they must be on the same page as you. Offer a reward if they meet their goal. Colin usually has a weight goal for each Dr. Harbison appointment. What motivates your child?

10)  It’s not all about the calories – Sure Colin could have met his goals through eating Krispy Kreme donuts (his favorite), but his body, even more so than other children, needs to be well nourished to grow. And fat takes longer to digest than protein and carbohydrates so eating a high fat snack may backfire as they are less hungry for real food later on.

11)  Keep a positive attitude – Raising an RSS child is a challenge, but there is a light at the end of the tunnel.

12)  Take care of yourself – Accept that you are doing the best that you can and allow yourself to take breaks. Burnout is very real and it will happen to you if you don’t stop for a break. A thriving healthy family depends upon a thriving, healthy mom and dad.

Healthy eating can be challenging for any family, but for RSS kids with limited appetite and GI issues such as reflux and constipation, it is even more so. I hope that I have reassured you that it is possible to instill an appetite and appreciation for high quality food. Our RSS children can grow up and learn to love healthy, nutritious meals that allow their bodies to grow and flourish if you just give them a chance and empower them to do so. This will set them up for a lifetime of healthy eating habits. And one day they will thank you for it!

Kale Chips Recipe

1 bunch kale (thick stems removed and torn in pieces)

1 tbsp. olive oil

2 teas. balsamic vinegar (optional)

Sea salt

Preheat oven to 350 degrees. Wash the kale thoroughly and dry in a salad spinner or with paper towels. Toss in a large bowl with oil and vinegar and rub the leaves to make sure they are well coated. Place on a baking sheet in a single layer. Sprinkle with salt. Bake for 6 minutes and flip over and bake for another 6-9 minutes. Remove when they are crisp and watch carefully so they don’t burn.

 

Emily is based in Boise, Idaho and she provides nutritional counseling services to clients in the Treasure Valley and across the United States via phone or Skype. You can contact her at eattothrivehealth@yahoo.com.