One mom’s search for answers about her ‘special’ child’s maladies
Anne and Kaiden Hoelz
By KATHY PAULSEN
At Christmas, we think of Santa Claus, but more important than Santa, there are angels – angels among us who live next door, who fill the world with sacrifice and love.
The angel of this story is a green eyed blonde, tiny in size, but gigantic in love and spirit, and her name is Anne Hoelz.
Anne is married to Nick – no relation to Santa Claus, but just as important.
Anne's story appeared recently in a news article titled "Reaching for Answers." She and her family are from the Ellendale area, and her story may make you marvel at the strength of the bond that has developed between this mother and son.
You will never hear Anna say she's tired, wished things had been different. Instead, she feels what has been occurring in her family's life is a miraculous thing that has opened many doors. It has educated her in many ways, and brought out talents that may always have been there, but were not brought out until there was a special need.
Anne is the daughter of Mike and Mary Granoswki, grew up north of Beaver Lake, and now lives in Albert Lea. She graduated from NRHEG in 1994, has an older brother, Steve, and a sister, Michelle, who is married to NRHEG English teacher and Star Eagle columnist Mark Domeier.
Anne and Nick Hoelz met in Owatonna in August 1994, and discovered they lived only five miles apart. They dated for two years and were married shortly after Anne’s 20th birthday, on Aug. 17, 1996.
After eight years of marriage, Anne and Nick decided to start a family. After four years of trying, they were able to hold their little boy in their arms.
Kaiden was born prematurely on Jan. 27, 2009, at Fairview Ridge Hospital in Burnsville. He weighed 4 pounds, 11 ounces and measured 17 1/2 inches at birth.
Kaiden was born with Down Syndrome. Nick and Anne had been told by their doctors how strong the possibility would be. But after 13 years of wishing and struggling to be able to have a child, aborting the pregnancy was not something they could consider.
This was a special child.
Kaiden was a happy little boy despite his medical problems, and gave them many smiles. Anne and Nick worked to help him learn, and Kaiden was doing well.
But when he was about six months old, things started to change.
Kaiden’s doctors started him on an iron supplement because he was anemic. They told Anne to start feeding him an iron fortified cereal and solid foods. He was also given a DTaP vaccination, as well as a Hepatitis B vaccination. A few weeks later, Anne's doctors also started her on an antibiotic that was deemed safe for breast feeding.
Kaiden’s started having alarming new medical problems – projectile vomiting, cradle cap, and sticky, stinky, yeasty diapers.
Then he began having benign myoclonic seizures (also known as "infantile spasms"). Kaiden cried, of course, and Anne felt helpless trying to comfort her son. She and Nick tried whatever they could, and soon discovered something: after Kaiden was fed sweet potatoes and carrots, his seizures intensified.
Anne took Kaiden to his neurologist and explained what had happened, and told the doctor she felt the foods she was feeding him were causing the problems. The doctor disagreed, but Anne was unconvinced. She began to research his vaccinations and iron supplement dosage, as well as the antibiotics she was taking (because she was still breast feeding Kaiden). In her research, she learned that some people with Down Syndrome do not process beta carotene very well, so she stopped feeding him carrots and sweet potatoes.
She also stopped giving Kaiden the iron supplements the doctor had prescribed, as he was spitting them up – and supplemented with powdered kelp instead.
At the peak of Kaiden’s seizures he would suffer six clusters of seizures a day. One spasm could occur every 10-15 seconds and they could last anywhere from 10 to 45 minutes. Kaiden would cry and scream, as they scared him so badly. Anne and Nick never knew when the clusters of spasms would occur; it could be at any time, day or night.
Anne continued her research into his seizures, and was able to gradually reduce their occurrence. Kaiden was down to an average of 4-10 seizures a day in about a 10-month time period.
Anne had been keeping track of when Kaiden’s seizures were occurring, as well as what he had been fed.
She also realized she needed to consider the food she herself was eating, after Kaiden's seizure activity spiked very high after she had eaten eggplant. Anne soon learned that after certain types of foods, those in the nightshade family (whether in his own food or through breast milk), he suffered seizures. After Anne stopped feeding Kaiden foods like potatoes, tomatoes and peppers, Kaiden’s seizures dropped considerably, down to one or three a day.
To test this theory, Anne ate a sandwich with tomato and mayo (mayo contains paprika), and saw his seizure activity spike. She then eliminated the nightshade foods again, and saw the seizures reduce again. Then Anne forgot and ate a hamburger with mustard. Mustard has paprika in it, and once again Kaiden's seizure activity spiked. All the nightshade foods – green peppers, eggplant, and paprika – were Kaiden's worst triggers.
After that, Anne completely eliminated nightshade foods for both her and Kaiden, and within a week his seizure activity reduced to zero. Kaiden has not suffered any seizures since May 28, 2010, when he was about 16 months old.
Anne started her family on a new diet, the Paelo Diet, which eliminates the nightshade vegetables, along with dairy, gluten, grains and legumes. Kaiden was already gluten and dairy free, so this was an easy decision to make.
During the time he had the seizures, Kaiden's cognitive development had become very delayed. Everyone told Anne to expect these delays, that they were part of Down Syndrome. But Anne felt differently.
Kaiden would have lucid moments that might last minutes or hours. Within a few days of the seizures stopping, Kaiden "woke up" and his cognitive development began to fly. In three short weeks, he gained 4-6 months of development. By six weeks, he'd gained 9-12 months of development, and gained steadily, although at a slower pace, after that. He gained so much in development so quickly that Anne knew there must be more to it and kept researching.
Anne came to the conclusion that the seizures were merely a side effect of what the nightshade foods were actually doing to him. Her current theory, which she says may or may not be correct, is that nightshade foods over-stimulated his nervous system, allowing it to become overloaded and too noisy, and he was not able to filter out the noise. While his senses could bring information to his brain, his brain couldn't handle it all and shut most of it down.
At one time, Kaiden's doctors had wanted to put him back on "highshade foods" to "make him gain weight," but Anne and Nick didn't agree, knowing it would trigger seizures and cognitive delay, and took Kaiden to a different doctor. They now go to Mankato and see a doctor at the Between the Bridges Healing Center.
Anne and Nick had been trying to help Kaiden learn, using flash cards, and despite the Down Syndrome, he was doing well. When he was 11 months old he said, "Mama" three times with intention.
They were his first and last words. The benign myoclonic seizures damaged his oral motor abilities, and he has not spoken in 4 years.
Along with the diet, the Hoelzes give Kaiden supplements, including plant-based vitamins, taurine, and amino acid therapy. Taurine is plentiful in breast milk, and they noticed after Kaiden was weaned from breast milk that he didn't learn quite as fast as he had been. They saw him pick up the pace again when taurine was added to his diet.
Kaiden starting walking at 2 1/2 years, just taking a few steps for a few months, then he stopped walking for about 8-10 months, but after being supplemented with taurine he began walking once again. Kaiden doesn't exactly walk like most kids, but he gets around.
Kaiden is very intelligent little boy, but he gets frustrated with not being able to communicate. He knows what he wants to say to others, but sometimes they don’t understand he is "telling" them.
"It is we who are lacking sometimes,” said Anne, “in trying to decipher what he is trying to tell us."
Nick and Anne tried sign language, but found it didn't work well, since Kaiden doesn't have much feeling in his fingers. Kaiden has motor (limb) apraxia, too, which means he is unable to physically execute learned purposeful movements.
Anne and Nick have started asking him what he wants in regards to food, clothes to wear, books to read, toys to play with. They would show him different things they thought he was trying to "say" and he would show them, by touching, what he wanted.
During this reporter’s visit, Kaiden indicated to his mother he wanted something to eat. Anne picked out a couple different things. Kaiden then touched the food he wanted.
Kaiden, upon being asked, says, "I love you" to his mother by gently touching his forehead against Anne's cheek.
Nick and Anne have taken Kaiden to see what could be done to help him in regards to speech therapy. Anne said it took a long time and a lot of arguing to get through to his therapists, and it wasn't until the Hoelzes told them they felt Kaiden has autism as well, that the ball really got rolling. This fall, Kaiden finally began receiving extra speech therapy, and they feel it has been beneficial.
Kaiden likes toys and some television too, but his real love is books. He will spend a great deal of time paging through them. One in particular is Anne's old high school World History book.
"He just loves it," Anne said.
The Hoelzes are hoping to start Kaiden using the LAMP (Language Acquisition Through Motor Planning) system.
Once trained in how to use the program, Kaiden would be able to push buttons on a device that will "talk "for him.
The device costs between $6,000 to $7,300 and an app is available for the iPad for $299. They believe their insurance company may pay for a portion. The Hoelzes don't qualify for medical assistance, but they are lucky enough to have a good health insurance company.
Anne said they hope to be able to try a loaner unit for a few weeks after the first of the year and then see what they can get worked out.
Fruits of learning
Anne feels she has received a priceless education, from trial and error as well as from journaling what she has done, to help her better understand things that have an effect on the human body. These are things that might help not just Kaiden but others as well.
Following the discoveries Anne has made regarding Kaiden, she sent letters to Kaiden's doctors, the University of Minnesota, the Down Syndrome Center, and many other centers for Down Syndrome and epilepsy. Anne hoped her discoveries would be of help to others. To her disappointment, Anne only got back one response, and that was from the University of Minnesota.
Anne has also shared what she had learned with others on Facebook and on "moms’ groups," and has a blog about their experience.
Going on the Paleo Diet was quite an adjustment for the family at first, but Anne feels it has proven healthier for all of them. They have experienced fewer problems with colds and other illnesses and are eating foods that are good for all of them.
As a result of the new diet, Anne started to look for recipes that used foods they all could eat. She also started adjusting some of the recipes she had earlier liked to make, After a time she had quite a collection of recipes, so she decided to put them all together into a cookbook.
Anne's cookbook, "Cavemom's Cooking," features Kaiden's story, and dozens of recipes their family enjoys and feel that others will too. Anne included in the book how their eating routine has changed their family's life. A friend’s dad published the cookbook for Anne as a gift, and printed 100 copies for free. She said she is getting ready to send off a new order, and is working on a second cookbook.
Anne's abilities and ideas don't end there. Three years ago she designed a new fitted-cloth diaper model that "grows" with the child, because mainstream cloth diapers weren't working for Kaiden. The diaper is made of naturally absorbent fabrics that can be pin, Velcro, or snap closure. They also feature an inner pocket to hold absorbent padding; and also feature a fully adjustable waist and rise: a true "one-side" fitted diaper.
In her spare time, she has also developed some fragrant-but-safe natural lotions and soaps. All of these creations of Anne's are available for purchase using her Etsy on-line marketing shop, Greenchild Creations –www.etsy.com/shop/greenchildcreations.
Anne credits her best friend – her mother – as a willing helper who is comforting and confident and helps make the world a more beautiful place. Anne also has conversations with other mothers of challenged children, helping them discover ways that they can help benefit their children.
There are angels among us, like Anne, who fill the world with sacrifice and a special kind of love. And special children like Kaiden, who not only shines in his own light, but lights the hearts of others with special purpose.