Weight gain and size of child, 7, remain unexplained
Anamarie Regino is 7 years old, 5-feet-1-inch tall and 200 pounds. Four years ago, she became the most publicized overweight youngster in New Mexico history when the state took her away from her family for 2 1/2 months.
The Children, Youth and Families Department contended her weight was life-threatening and said her parents weren’t managing it adequately.
At the time, the state said Anamarie was 3 1/2 feet tall and weighed 124 pounds — some three times heavier and 50 percent taller than the average 3-year-old.
To date, Anamarie has not been given a specific diagnosis. She continues to grow at an unusual rate, although her weight gain has tapered off with medication for insulin resistance. Her condition, which includes some developmental delays, requires various therapies, monitors and a strict diet.
Anamarie’s mother, Adela Martinez-Regino, says her daughter hadn’t lost any weight when the state returned her to her family. Any diagnosis that might come to mind — pituitary or thyroid problems or Prater-Willi syndrome — has been tested and put aside, says Martinez-Regino. “There’s no scientific explanation,” she says.
Her current pediatrician, Javier Aceves, has said other children share similar characteristics with Anamarie, but the traits don’t combine to fit a single syndrome.
Martinez-Regino continues to talk publicly about Anamarie in the hopes that she can find other parents who might be dealing with the same situation.
‘A little strange’
Only 6 pounds, 13 ounces at birth, Anamarie began to gain significant weight at 2 months old.
“It was solid weight, too, not that chubby stuff you see in babies,” says her mother.
By the time the little girl was 3, bone scans showed her to have the bones of a 7-year-old. At 3, she was sometimes mistaken for a 10- year-old.
Now, at 7, she has the bones of a 14-year-old, and suffers from asthma and sleep apnea — interrupted breathing during sleep, one of the most severe problems for obese children. She receives physical, occupational and speech therapy for various disabilities. Anamarie has “lazy eye,” meaning her eyes don’t track together, and she recently had her second surgery to correct it. A drooping eyelid was also fixed during that surgery.
Today, the Martinez-Regino family — once the center of much state interest — is dealing with Anamarie’s health without state intervention. “I’ve not had any contact from the state since January 2001,” says Martinez-Regino.
“It’s a little strange, considering they wanted to take her away from us.”
Matt Dillman, spokesman for New Mexico’s Children, Youth and Families Department, says that under state confidentiality laws, “We can’t even confirm we’ve had the case.”
For the first few months after Anamarie was returned to her family, her mother says, a staffer from the state lived with the family, monitoring Anamarie’s eating. Today, Anamarie sees her pediatrician once a month. She has a machine in her bedroom to monitor her sleep apnea, and an oxygen machine if she gets sick.
A special bike
Her physical therapist, Robert Romero, says her gross motor skills are behind for her age, but her fine motor skills are better. Her mother says Anamarie loves to do arts and crafts projects, especially beading.
“She really wanted a bicycle — all her friends had them,” says her mother. “We got her one with training wheels, but they couldn’t hold her up.”
At Kidpower Therapy Associates, Anamarie is able to ride a special three-wheel bicycle. During a recent session there, Romero said her physical progress is encouraging. “When she first came (four years ago), she needed to be held just walking on the cushions,” he said. Now her balance is much better and she handles herself well on the various equipment.
“Choose wisely, grasshopper,” says Romero, as Anamarie selects the five exercises she will do that day and writes them on a board. At first tired, she becomes more energized and talkative during the 50-minute session, even asking Romero to time her on her last exercise, following a bike route with stops and starts.
Kidpower also provides Anamarie’s occupational therapy and speech therapy.
“She speaks and reads and writes English and Spanish, but she needs some speech help,” Martinez-Regino says.
Both the physical and the occupational therapy can help her visual/perceptual skills.
“She has some very weak eye muscles,” says Romero, “which could lead to some safety issues in how she literally perceives the world.”
Anamarie also attends “adaptive PE” at her public elementary school. “She goes for walks and on Wednesdays, she goes to the University of New Mexico pool for swimming,” says her mother.
A strict diet
Meanwhile, the family deals with the same eating issues any parents of an overweight youngster would face. Anamarie’s regimen calls for almost 1,300 calories a day. Martinez-Regino says Anamarie’s typical breakfast is: 1/2 cup cereal like Shredded Wheat or Grape-Nuts, 1/2 cup low-fat milk, 1/2 banana or 1/2 apple, and one egg.
Lunch is 1/2 sandwich (ham or turkey on whole wheat bread with a slice of cheese), a 4-ounce container of fat-free yogurt, an apple or banana and a whole graham cracker plus half of another.
Dinner is 1 ounce of broiled or baked meat (the family has a kitchen scale to determine the weight), a small serving of vegetables, an apple or banana and a 4-ounce container of fat-free yogurt.
Anamarie can have one snack a day, which she has when she comes home from school: a small container of yogurt, a piece of fruit and 10 graham cracker sticks (not quarters of whole crackers).
She’s been on a strict diet since she began eating solid foods as an infant, says her mother. When she first came home from foster care, she was allowed only 800 calories a day, but that figure increased as she grew in height and her physical activity increased.
Regino-Martinez doesn’t want Anamarie to hide her eating, so they talk about what she ate at school. “If she has a cupcake because it’s someone’s birthday, then we just decrease what she has for snack or for dinner.”
While enchiladas are still on the family’s menu, it’s only once a month and then they’re made with lean meat and low-fat cheese and the tortillas aren’t fried in oil.
A constant battle
The initial diagnoses doctors suggested — like Prater-Willi syndrome or leptin receptor deficiency — didn’t fit Anamarie, says her mother. “Those are the things where parents have to literally lock the cabinets to keep kids from eating everything,” says Martinez-Regino.
“That’s just not like Anamarie. I still have Halloween candy in the house that she’s not interested in.” She says that as a toddler, Anamarie didn’t even know what a cookie was until they enrolled her in a state-run pre-school program.
Anamarie’s doctor recently prescribed metformin for her insulin resistance and her family is pleased with its effects. “She was gaining five pounds a month before,” says her mother. But from October through December, prime months for holiday feasting and goodies, Anamarie gained only a total of two pounds.
“Before, she ate everything on her plate,” says Martinez-Regino. “Now she doesn’t always finish everything.”
Anamarie’s teachers and classmates know she has to monitor her eating, bringing her lunch from home each day. “It’s hard though. Kids have candy at school, there are vending machines and soft drinks.
“And when the ice cream truck drives down our street, oh, that’s so hard.”