The third day of Max Keary’s life brought some major challenges. A massive pulmonary hemorrhage led to a brain hemorrhage, which in turn led to numerous surgeries and a final diagnosis of spastic cerebral palsy.
After nine months in the hospital, Max was finally allowed to come home. Though his parents knew to expect challenges, they thought the worst was over. Unfortunately, the days that followed brought a challenge just as stressful as the brain hemorrhage: the challenge of getting Max to eat.
Max’s parents had been told to expected certain developmental difficulties. The one that took them by surprise was what happened at mealtime. As his mother Fiona writes, it would take
“an hour to get through a one course meal or a bottle and by the time he had finished, he had used up the same amount of calories that were contained in the meal.”
For many, the physical challenges of cerebral palsy create a nutritional challenge as well. Because of poor information about specific nutritional needs, it’s estimated that up to one third of children with cerebral palsy are poorly nourished.
Fortunately, with the right information, these special nutritional needs can be met without difficulty. And certain studies are suggesting that nutrition could be a valuable key to alleviating and improving symptoms in some cases of cerebral palsy.
The nutritional issues frequently faced by cerebral palsy patients start with FEDS problems. FEDS is an acronym for feeding, eating, drinking and swallowing. Because of poor muscle control or development, CP patients can suffer from an inability to chew or swallow effectively, which can lead to choking. In some cases, food will enter the lungs; this situation, known as aspiration, can cause chest infections or pneumonia.
Even if nothing that drastic takes place, CP patients can experience oral-motor difficulties while eating. Spastic movements of the facial muscles can cause the lips to resist closing, or the tongue to move erratically, causing food to spill out of the mouth. In the time it takes a child without CP to eat a normal meal, a child with CP may take in hardly any nourishment at all.
The same difficulties with eating extend to drinking. As a result, some CP patients run the risk of becoming extremely dehydrated.
Parents of children with CP will be all too familiar with the frustration that their children experience relating to fine motor skills. This frustration can make mealtime a daily battle. Children get increasingly hungry and tired while being unable to get much food down. In addition, the sensory difficulties that CP patients have can make them overly sensitive to the sensations involved in eating. Babies and small children with CP will commonly turn away from the touch of food, no matter if it comes from a spoon, bottle or even their parent’s hand. Some will bite down, refuse to open their mouths, or even gag or vomit.
Other children are eager to eat, but experience acid reflux or severe constipation thanks to the underdevelopment of digestive tract muscles. This, of course, will lead to pain and distress after eating. In the long run, it can cause ulcers even in small children.
Rules of Thumb
If mealtimes are proving a challenge for your child, here are some basic rules that can bring back your peace of mind:
- If your child is currently underweight, start supplementing his or her diet with nutritional drinks. These can also be used to help with boosting your child’s intake of crucial vitamins that can improve the symptoms of CP. For example, a nutritional drink made with whole milk or yogurt offers bone-building calcium and other essential nutrients.
- Avoid foods with complicated or tough textures. Thick and sticky foods (such as peanut butter) or foods that require lots of crunching or chewing (such as raw carrots or stringy meat) are often problematic for children with cerebral palsy.
- Cooked whole foods that are rich in fiber are particularly recommended for children with cerebral palsy. Whole grains (like brown rice or oatmeal) and vegetables (such as squash or steamed broccoli) are very easy to eat and digest, as are fruits with high water content (such as apples and pears).
- Steer clear of spicy or acidic foods, no matter how healthy they might be. For example, oranges are packed with vitamins, but they are likely to trouble a child with mouth or digestive sensitivities.
- The biggest problem on your table may not be the food, but the utensils. The muscle control required to grip a fork or spoon is a long-term goal for a child with cerebral palsy, not to mention the effort to guide the utensil safely to their mouth. There are many companies that offer specially designed utensils for people with CP. For example, the S’Up Spoon was developed from a Kickstarter campaign in 2014 and has received rave reviews from the CP community.
- When mealtimes become a source of frustration, don’t hesitate to readjust the schedule. Experts agree that patients with cerebral palsy benefit from shorter and smaller meals that occur throughout the day, rather than three sit-down meals.
Vitamins and Supplements
Medical researchers are hard at work looking for nutritional therapies to help alleviate and improve the challenges that come with cerebral palsy. Many of them are focusing on specific vitamins to improve bone density, strength and flexibility. While nothing conclusive has been reached yet, a few key minerals and vitamins have shown convincing results.
- Calcium: since cerebral palsy brings greater risk for osteoporosis, calcium is a crucial mineral recommended by nearly all nutritionists for children with CP.
- Magnesium: used for over 300 of the body’s biochemical reactions, including normal muscle and nerve function, this mineral is known to sooth spasmodic muscle movements and induce relaxation. It can help with everything from mood to constipation to getting a good night’s sleep.
- Omega-3 fatty acids: not only is the “good fat” essential for proper metabolism, it also reduces involuntary twitches in people with movement disorders and may decrease the frequency and intensity of seizures. It also helps with mood and constipation, and builds brain function.
Getting the Support You Need
In the long run, understanding what causes your child’s difficulty eating is the key to relieving the symptoms and restoring your child’s nutritional health.
For example, there are three main phases in swallowing, any one of which can present issues to a child with CP. (At least 90 percent of CP patients experience this condition, known as dysphagia.) Your child may be experiencing difficulty during the oral phase of swallowing (when the food is initially placed in the mouth, and moistened/chewed to the right size). If so, physical therapy will be vital in helping your child develop the strength and coordination to chew properly. The two other phases of swallowing (pharyngeal and esophageal) will often require diet modified to accommodate the child’s challenge. Other times a non-surgical intervention, such as a feeding tube, may be necessary.
But always remember that it isn’t your job to figure these things out alone. As with any other aspect of cerebral palsy, the key to ensuring your child’s proper nutrition is making sure that your child has the best possible medical support. Knowledgeable specialists such as dietitians, feeding therapists, occupational therapists, speech/language pathologists and pediatric dentists are going to be your greatest allies in determining how to get your child the nutrition he or she needs to thrive. With adequate nutrition, hydration and vitamin intake, your child will have the physical and mental resources to learn, grow and develop in every possible way.