Addison-and-Susan.jpg

My Son’s Journey with Down Syndrome: How Nutrition Improved His Health

July 20, 2010
By Guest Blogger
|11Comments|


I live in paradise. Yes, the kind on the postcards: palm trees, coconuts, sunshine, blue sky, all that. Costa Rica has been my home for 12 years. I came in search of paradise, and in the end I got it. The funny thing is that it didn’t look anything like the postcard I’d imagined.

In 2005, my second child was born with Down Syndrome. Addison’s journey into this world would become a trip into healing – not only physically, but spiritually and emotionally, for him and our entire family.

During my pregnancy, Addison was diagnosed with a defective digestive tract. Without immediate surgery, he would most likely die. I knew food and exercise would be a huge part of his recovery. To believe in this principle was one thing; to implement it was quite another.

After discovering the benefits of breast feeding with my first child, I pumped every few hours for Addison, even freezing the colostrum. Drop by drop, he received the milk from a tube until he was able to eat on his own. While still in intensive care, an ultrasound exposed two cysts on his bile ducts. Left untreated, the cysts would turn cancerous—which meant surgery. That was the second time in less than a year someone had told me my son might die.

Three years earlier, alternative food and natural therapies helped heal a rampant case of tooth decay, which appeared all over my daughter’s baby teeth. Every dentist we went to prescribed major surgery, loads of fillings, and capping all her front teeth with no guarantee any of them would stay in. Terrified and desperate for an alternative, we began going to my acupuncturist. In one of the sessions, he handed me a small piece of paper with a list of alkaline and acidic food. It was the first time I’d heard of the concept, but it instinctively made sense. I bought my first juicer. To my relief, my daughter began drinking apple, celery, and cucumber juice from her special princess cup every day. I began soaking almonds, ditched white sugar, and snuck seaweed into her wheat-free pancakes. Although a few more teeth chipped, others actually calcified and seemed to grow stronger.

My son’s cysts mirrored my daughter’s tooth decay. A naturopath physician confirmed that if we balanced my son’s chemistry, the cysts could not survive. Since Addison was only breast feeding, all of his nutrition came from me. I began doubling the green juice I drank and modified my diet.

Addison-Carmichael

At nine months, I took Addison to an ultrasound to see if the cysts had grown or, at least, stabilized. I held him close as the cold goo was lathered on his stomach. The doctor was silent as she wiggled the wand around. “They’re not there,” she said.

“What did you say?” I asked, as my Spanish was often shaky in medical situations.

“I can’t find the cysts,” she said. “They’re gone.” A victory indeed, but with Down Syndrome, there’s always another challenge ahead.

Books never glossed over what my son’s limitations might be: speech deficiencies, heart problems, digestive difficulties, fine and gross motor skill delays, crooked teeth, physical abnormalities, and lagging in emotional and cognitive development, to name a few. Although Addison had a high level of cognitive development, his walking and gross motor skills were very slow to develop. He struggled with a lot of mucus, and smaller nose and ear tubes made it even harder to breath. At three years old, he contracted a case of bronchitis which eventually became pneumonia. Over the course of a year, Addison was hospitalized with bronchial pneumonia three times. Yet between each stay, I knew he was getting stronger.

A few exercise and therapy machines scattered around the house became an all-out gymnasium in the living room. We made respiratory therapy a family activity. Addison chased my daughter around the living room in a game of tag, we danced to ABBA, twisted into yoga positions, and played silly games for hours on mattresses. A good cry was counted as therapy, every phlegm ball extracted a victory, every step a prize, and every deep laugh a sound from heaven.

Addison-and-Sister

Deciding what’s best for me is one thing because I feel the effects when I make questionable food choices or slack off in exercising. Ever try getting raw parsley, Swiss chard, or kale into a child? Or administer a Neti Pot to a screaming toddler? Yet over many trials, spit ups, tummy aches, bites, and food matter thrown at me, Addison finally settled into a healthy diet that he seemed to enjoy. He eats sprouts of all sorts, avocados, celery, parsley, and other greens for breakfast. He drinks a green juice for lunch and dinner, has a 95 percent raw diet, never eats wheat, satiates his thirst with green coconut water, and rarely eats sugar. A tremendous benefit of living in Costa Rica, along with the year-round Vitamin D-packed sunshine, is that many of the healthiest foods on his menu are really inexpensive. And, thankfully, my daughter, who began snubbing her nose at the green juice, is giving it a try again.

After almost five years, Addison is finally sleeping on his own without struggle. Though he was sent home with a supplemental oxygen machine, which he used frequently for the first six months, it is now tucked in a corner for occasional use. He walks strong, climbs up and down steps, and has started to run. Paradise finally came in a way I never expected. But from where I stand, it’s picture perfect.

Susan Lutz is a writer and film maker living in Costa Rica with her two children. MotherJungle.com chronicles her adventures and daily search for paradise. She recently completed her first documentary film, “The Coffee Dance,” and is the author of a video media arts book, “The Paradox of Paradise: A Woman’s Journey to a Place called Heaven on Earth.” She is also co-editor of the Organic Living section at All Things Healing, an online wellness hub.



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11 responses to My Son’s Journey with Down Syndrome: How Nutrition Improved His Health
  1. Wow. what an amazing story and an amazing mom! Thank you for sharing. I know nutrition saved my health, and so I have always prioritized it for my kids. Congrats on what you have accomplished with your family!

  2. A great story- it would such a challenge trying to get your kids to have green juices- I sometimes dislike them myself!

  3. What an amazing story. There is nothing better in the whole wide world than amazing moms. I have one. I hope to be one. Susan can be the mayor of amazing mom town!

  4. My husband always jokes about moving there but with a child with Down Syndrome and not speaking the language I didn’t want to go! Thanks for sharing your experience.

  5. Wow, this is a great story. I can certainly relate to this having had a similar journey myself with our son. Thank you for sharing this with the world!

  6. It’s quite a journey to move to Costa Rica. But any journey is made so much easier if we’re all healthy! If ever any one wants tips or ideas about moving to paradise, be sure to let me know. Thanks everyone for reading!

  7. My son has Down syndrome also. He has nut allergies so we have to limit soem raw recipes. He does love smoothies. I would love to know what you gave your daughter for her teeth.

  8. For my daughter’s teeth – it did involve almonds, so that may not work. I gave her also a lot of chlorophyll. I found a mint kind with a taste she liked. I juiced lots of apples and celery as her main drink. For snacks, I gave her avocadoes and dates on toothpicks. I’d put them all the plate all fancy and she gobbled them up!

  9. Awesome! Don’t be afraid to give your kids green juice. My youngest begs me for it. The oldest keeps trying, but doesn’t have the same fondness for it.

  10. thanks for your sharing !!!!!

  11. I can relate to you story and i believe that our children are not challenges but blessings in our families lives. We learn day by day with them and the most important thing i have learn from my Zailyn is LOVE and PATIENCE.