Reaching for answers
Albert Lea woman changes son’s diet, discovers reason for his seizures
The love between Anne Hoelz and her 4 1/2-year-old son, Kaiden, is crystal clear.
Though Kaiden cannot speak a word, it’s evident by the smile that spreads across his face as he sees his mother and reaches out to her.
She and her only child have a special bond.
Too much for Kaiden
About four years ago when he was almost 8 months old, Kaiden, who has Down syndrome, began having benign myoclonic seizures.
His mother said he stopped smiling, and by the time he was about 11 months old, he said his last word.
“It was heartbreaking,” Anne said. “I had a happy little boy, but where did he go?”
Prior to the seizures, she and her husband, Nick, had been using flashcards with Kaiden to help him learn, and despite the Down syndrome, they thought he was developing relatively well.
That development came to a halt when at Kaiden’s six-month visit to the doctor, the doctor instructed Anne to give him iron supplements and to begin feeding him iron-fortified cereals and solid foods because he had become anemic. He was also given the DTaP and hepatitis B vaccinations.
A few weeks later, Anne went on antibiotics deemed safe for breastfeeding.
“All of this was too much for Kaiden’s little system,” Anne said.
Kaiden quickly developed projectile vomiting, cradle cap and what Anne described as “stinky, sticky, yeasty” diapers. And just a few days later, the seizures began.
“When he was having the seizures, you just felt helpless,” she said. “He would cry and all you could do was comfort him and hope that the seizure stops.”
Shortly after the seizures started, she noted that when she gave Kaiden sweet potatoes and carrots, his seizures intensified.
She went to his neurologist with her observation, but the idea that his diet and seizures were linked was rejected.
“The neurologist we saw told me outright that he was sure diet had absolutely nothing to do with the seizures,” she said.
But she suspected otherwise.
Despite the doctor’s opinion, Anne began researching Kaiden’s vaccines, the dosage of his iron supplement and her antibiotics.
Labels for all listed seizures as a possible side effect. After she researched that carrots and sweet potatoes intensified the seizures, she stopped feeding him those foods. She then discovered that some people with Down syndrome do not process beta carotene well.
She also stopped the iron supplements because Kaiden had started spitting them up.
Anne said she began looking at holistic remedies.
A light in the darkness
At the worst, Kaiden had six clusters of seizures a day with one spasm every 10 to 15 seconds for anywhere from 10 to 45 minutes.
“He would scream and cry after each spasm,” Anne said. “These clusters would happen at random times of day and night. As a parent you feel so
frustrated and want to cry right along with them.”
On some of the remedies, his seizures were reduced down to an average of four to 10 single spasms per day for three months, and Kaiden didn’t cry nearly as much.
Anne said she still felt strongly the seizures had something to do with food, as most of the seizures happened around mealtimes.
She began keeping a log of Kaiden’s seizures, along with what he ate.
That’s when it all clicked.
She noticed when Kaiden ate specific types of food, such as tomatoes, potatoes and peppers — which she later discovered are in the nightshade family of foods — his seizures would spike. “Nightshade” is the common name used to describe more than 2,000 species of plants. She found out that substances in these foods can sometimes impact nerve-muscle function.
She eliminated those foods from both her and Kaiden’s diet and saw the seizures drop to one to three per day. They went on a strict Paleo diet, which eliminates grain, gluten, dairy, legumes and nightshade vegetables.
Eventually, in combination with a calcium supplement, the seizures stopped. His last one was on May 28, 2010.
“Within one week of being seizure-free, Kaiden became so much more alert, so much happier,” she said. “He used to smile all the time before the seizures started and during the time he had them, a smile was a pretty rare thing.”
In four to six months, Anne said Kaiden excelled. He began standing and supporting himself, and she said within six weeks, he had gained nine to 12 months of development.
Anne shares her story of her heartbreaking experience and how her new eating routines changed the family’s life in a cookbook called “Cavemom’s Cooking.”
It features dozens of recipes. When she’s not making new recipes, Anne sells other homemade products on Etsy.com. The family lives in Albert Lea.
Anne has sent letters to Kaiden’s neurologist about how Kaiden’s seizures stopped and to other universities, Down syndrome centers and epilepsy centers, in hopes it could help others. She received only one letter in response.
Now, the whole family is on the Paleo diet, and Anne said it has been worth it. While it was an adjustment at first, she said she thinks they are all healthier from it.
“It’s amazing what you can accomplish when you have to, when you do it for someone you love,” she said.
Spiced Cranberry Sauce
12 ounces whole cranberries
1/2 cup water
3/4 cup maple syrup
1 teaspoon cinnamon
Nutmeg, just a sprinkle or two
1/8 teaspoon allspice
Cardamom, just a sprinkle or two
Cook together in a saucepan. Boil, reduce to desired consistency.
Fruit of choice, finely chopped — cherries, raspberries,
blueberries or strawberries. Choose one fruit or mix them together.
Mix to taste.
Serve over salad.
1/2 apple, chopped
Cherry vinaigrette (see fruit
Layer ingredients on a bed of leafy greens.
Basic Nuffin Recipe
3/4 cup almond flour or almond meal
1/4 cup coconut flour
2 teaspoons homemade
1/4 cup rendered suet or
tallow or oil of choice
1/4 cup maple syrup
1/2 cup cooked fruit or
vegetable (varies with recipe)
1/4 cup water (optional, only use if batter needs thinning)
Mix dry ingredients in one bowl. Mix wet ingredients in another bowl. Then mix together. Spoon into a well greased muffin tin, cups about 3/4 full. Bake at 350 degrees for 20
Makes about 10 small nuffins.
Prepare Basic Nuffin recipe, but add the following:
1/2 apple, chopped
1/8 cup dried sweetened
Fresh orange zest