How often do we hear mothers of mentally disabled young people say things like: "She eats too much... she needs to diet but won't listen... she's gained so much weight over the past few years..." And how often do we see one of our friends pounce on food almost ravenously, eating too much, grabbing everything on the table? We all know that staying at a reasonable weight—without burdening the body with unnecessary extra pounds—matters for health, for moving and working without strain, and for facing the later years more peacefully.
We received a letter that illustrates this very problem.
Dear Mariangela,
About Sally's obesity, I'm sorry to say I have nothing positive to offer. It seems like a problem with no solution, and for us it's deeply distressing.
Sally weighed 60 kilos in 1979. Over the past twenty years she's gained nearly 36 kilos. Today she weighs 98 kilos.
In the last ten years we've had to give her psychiatric medications, now thankfully at very low doses. We can't say the weight gain is due to these drugs—it could have happened anyway.
Her thyroid levels are checked twice a year. Since they're always normal, the endocrinologist says there's nothing to be done about the thyroid itself, and only two things matter: eat less, move more.
Sally already eats little—less than I do. Getting her to move much is hard because of her weight.
Two new anti-obesity drugs are coming to Italy:
- Zenical, which reduces fat absorption but causes diarrhea.
- Reductil, which acts on the brain's satiety center so you feel full with less food. This drug can raise blood pressure and disturb heart rhythm.
Both of these are obviously contraindicated for Sally.
And there's nothing more I can say!
Sarah Me Allister
To learn more and offer useful advice to mothers and those with a sweet tooth, we turned to someone who really knows this subject. Dr. Marie-Odile Réthoré, director of the Jéróme Lejeune Medical Center in Paris—a center for research and consultation that specializes in intellectual disabilities, trains doctors and paramedical staff in caring for people with intellectual disabilities, serves as a documentation center, and provides information services on intellectual disorders for families.
Children with intellectual disabilities need guidance from an early age to develop good eating habits and healthy routines around the timing, quantity, and quality of drinks they consume.
Children with Down syndrome readily drink all sugary liquids—fruit juices, milk, especially cola. But they tend to aspirate plain water, so they often refuse it, because of weak muscle tone in the throat. This doesn't happen with cola and other sugary drinks because they stick to the throat lining and can be swallowed more slowly, while water goes down too fast. Despite this difficulty, children must develop the habit of drinking a liter of water daily, and adults a liter and a half. Very few do, which is why they have excess uric acid and end up damaging their joints. Damaged joints mean knee pain, they walk less, they gain weight, and the joints deteriorate further. It's a vicious circle.
Also, we must understand that people with trisomy 21 have a real disorder in sugar metabolism that swings between high and low blood sugar. In all of us, blood sugar rises after meals and drops slightly when we haven't eaten. In people with Down syndrome it swings from too high to too low. At breakfast they're often not hungry—slightly drowsy, feeling a bit nauseous—because blood sugar is too low, so they don't eat. As the morning passes, things improve; they go to school and by lunchtime they're hungry and eat, but they eat too much, too fast, without chewing, without drinking. After eating so much, they feel tired. Then blood sugar drops again and at dinner they eat too much once more.
To address these blood sugar swings, give them five meals a day if possible, or at least four. Most important: they shouldn't snack continuously throughout the day.
- Upon waking: give them orange juice (not a sweetened drink) or a sugar cube. Within ten minutes the sugar enters the bloodstream, blood sugar rises, and they can eat breakfast.
- Breakfast: should be varied. Try to offer what the child wants. Cookies or milk with butter or jam, yogurt or soft cheese if they refuse milk—you can add ham or an egg. Breakfast should be a real meal.
- Mid-morning: ideally offer raw vegetables or fruit.
- Lunch: eat only one course—a plate of meat or fish with vegetables and legumes or potatoes. Nothing else: no first course, no dessert or fruit.
- At 4 p.m.: snack on fruit or yogurt.
- Dinner: a bowl of soup or pasta with a piece of cheese or a slice of ham and a portion of vegetables or legumes.
This doesn't increase the total amount of food—it's just distributed differently. The child's weight won't increase excessively. These habits must begin in earliest childhood. Weigh the child monthly. If weight gain seems excessive, remove just one small thing—butter or jam at breakfast, for example—and weight will rebalance. All of this is straightforward but requires a certain discipline.
One more thing matters: monitor thyroid function. Every two years, ask for a thyroid check. When TSH—which measures pituitary stimulation—is somewhat elevated, it signals thyroid sluggishness leading to weight gain. So monitor thyroid balance every two years, at all ages.
This detailed advice matters more than many unnecessary tests sometimes prescribed.
Here ends our conversation with Dr. Réthoré. We'd like to add one small personal observation. It seems clear that such healthy eating habits and such strict food education are possible only if our young people's days are filled with other things: interests, activities that engage them, friendships with peers and friends. Only these "positive pleasures" can help them resist the "harmful pleasure" of too much food, too richly prepared, eaten too constantly.
- Nicole Schulthes, 1999