Living With Cerebral Palsy

Cerebral Palsy Management

Living with cerebral palsy can be challenging, even if the symptoms are mild. While cerebral palsy cannot be cured, treatments can improve your child’s quality of life.

You may have to change certain ways of living to fit your child’s needs. Luckily, there are many resources that can make these changes easier.

Therapy, medications and support groups can improve your child’s physical and emotional health. Surgery may also help with more severe symptoms.

Certain health issues may require special care. Feeding, clothing, and general mobility can all be affected by cerebral palsy. Special tools called adaptive equipment can help in these areas.

Thankfully, there are many ways you can give your child the care they need. A wide variety of options are available to you. By exploring them, you’ll be pointed in the right direction. The help your child deserves is at your fingertips.

Cerebral Palsy Therapy

Therapy allows people with cerebral palsy to keep their bodies healthy. Physical therapy helps stretch out muscles and make them stronger. This prevents painful muscle freezes called contractures, which can be permanent. The earlier therapy begins, the better your child will be able to overcome challenges.

Physical therapists will work with your child to make sure they get quality care. A therapist can also teach your child to use adaptive equipment, which helps manage many issues. Some examples of adaptive equipment include braces to help with movement or fitting the sink and toilet to meet your child’s needs.

“Physical, occupational, and speech therapies give patients more autonomy, progress at school academically and socially, and hope of a successful future.”

– Katie Lavender, RN

Cerebral Palsy Support

Living with cerebral palsy can be made easier with the help of support networks. United Cerebral Palsy (UCP) has a huge list of local support groups for all areas of the United States.

Support groups can help your child and your family. By joining a support group, you can learn from people facing similar issues. They can give good advice on doctors, treatments, and other points of concern. Support groups can also help your child make friends with other people affected by cerebral palsy.

By exploring support groups near you, you can learn what local resources could help your child. Local resources are important as you investigate home care options.

“Ask questions to see if a group is right for you — for example, whether it’s meant for people with a specific medical condition or at a certain stage of illness.”

– Katie Lavender, RN

At Home Care for Cerebral Palsy

Children with cerebral palsy may face many problems around the house. The issues your child may face depend on how their brain has been affected. Some children may have only minor symptoms of cerebral palsy, while others may need significant care.

While children with cerebral palsy may have a hard time with some basic tasks, there are ways that you can help them. The amount of help they’ll need also depends on the specific challenges they face.

Feeding

Many children with cerebral palsy have challenges eating and drinking. Cerebral palsy may affect the muscles of the mouth, throat, and neck. Thus, kids with cerebral palsy may not be able to chew and swallow as easily as other children.

Feeding kids with cerebral palsy can be a very slow process. According to the American Academy of Pediatrics (AAP), most children start self-feeding at nine months, but children with cerebral palsy may need help long after this age.

Some common challenges you might face when feeding a child with cerebral palsy include:

• Strong dislike or sensitivities to certain textures
• Vomiting or re-chewing food
• Choking if they cannot swallow properly
• Pocketing food in the cheek area
• Drooling and excess saliva

Cerebral Palsy and Malnutrition

While feeding children with cerebral palsy can be difficult, there is an added risk of malnutrition. Involuntary movements, tense muscles, and bad feeding habits can cause your child not to get enough calories or nutrients.

According to the AAP, some effects of malnutrition include:

• Weight problems and stunted growth
• Acid reflux and chronic respiratory infections
• Constipation and pressure ulcers

Use these tips when preparing meals or feeding a child with cerebral palsy:

• During meals, provide calorie-dense foods.
• Offer thick liquids in a cup. Solid foods can be hard to chew.
• Add snacks when necessary. If feeding is difficult now, a snack later may be better.
• Try different textures of food (liquids, solids, hard, soft, etc).

In some cases, a professional therapist or nurse can help a child with cerebral palsy feed themselves. However, this type of care can be very expensive over time.

Constipation

Constipation is when someone has difficulty emptying their bowels. It is a common symptom of cerebral palsy.

Constipation is often caused by malnutrition. The nutrients that a child lacks because of their feeding issues will prevent them from emptying their bowels properly.

Suppositories can help your child have frequent and healthy bowel movements.

Suppositories

Constipation can be treated through the use of suppositories. Suppositories are drug delivery capsules that are typically inserted into the rectum. This allows them to work fast and provide relief.

You may have to insert the suppository if your child cannot. It depends on your child’s age and their condition.

Inserting a suppository is not difficult.

Here are some suggestions on how to do it:

• Make sure that the suppository is warm
• Position the child so that he or she is relaxed, lying on their side with knees bent
• Gently insert the tip of the suppository into the rectum and either slowly squeeze the contents out or insert completely, depending on the type
• Hold the child’s buttocks together until he is ready to have a bowel movement
• Allow the suppository to expel into a diaper or help your child to the toilet

Toilet Training

Children with cerebral palsy sometimes have trouble controlling their bladder or bowels. This affects toilet training of children with cerebral palsy.

Children who do not have cerebral palsy are typically toilet-trained between the ages of three and five. Children with cerebral palsy cannot be expected to meet the same milestones.

Specific Problems Affecting Toilet Training

Diet, medication, and the ability to learn control may prevent your child from learning how to use the toilet.

Common problems include:

• Neurogenic bladder (cannot urinate)
• Overactive bladder (cannot suppress sudden urges to urinate)
• Constipation
• Stress incontinence (urine is released when coughing, sneezing, or exercising)
• Overflow incontinence (bladder cannot empty completely)

However, many children with cerebral palsy still can learn to use the toilet. It just takes time and practice.

Here are some steps to try when toilet training cerebral palsy children:

• Start with a child-sized potty
• Encourage the child to notify you when they need to go
• Schedule regular mealtimes with a potty visit directly after
• Train the child using potties that have side supports
• Ensure that the child’s diet includes enough fiber and liquids

Dressing

Putting on clothing for the day can be a challenge for children with cerebral palsy. Because cerebral palsy affects their motor skills, they may not be able to dress easily. It depends on how severe their symptoms are.

While you may be tempted to dress your child, you should have them try to dress themselves. Dressing can boost their motor skills and self-confidence.

You can also buy clothes that are designed for people with disabilities. Children with cerebral palsy can dress themselves more easily when clothing is simpler to handle and fasten.

Types of Clothes to Purchase

Traits to look for in clothing items that may make them easier to wear:

• Velcro instead of buttons
• Zippers that are stitched together at the base
• Loose-fitting clothing
• Elastic waistbands instead of belts
• Clasp fasteners on shirts
• Shirts that are put on arm by arm instead of over the head

Dental Hygiene and Cerebral Palsy

Kids with cerebral palsy face dental hygiene challenges for several reasons. Uncontrolled movements in the hands and arms may make it hard for them to brush their teeth. Stiff muscles in their face can also make it hard for them to hold their mouth open.

Dental Health Concerns

Outside of poor dental health, there are specific dental health issues that children with cerebral palsy may face.

According to the U.S. National Institutes of Health (NIH), some of these include:

• Gastroesophageal Reflux: frequent episodes of vomiting
• Malocclusion: an open bite with protruding back teeth (typically associated with tongue thrusting)
• Dysphagia: difficulty swallowing (semi-soft foods tend to adhere to the teeth)

Talk to your dentist about your child’s specific needs if their cerebral palsy is affecting their dental care.

Suctioning

Suctioning uses a device to remove blockages in your child’s airways. Suctioning for children with cerebral palsy is often needed so they can breathe properly.

Cerebral palsy can affect the movement of the lungs and prevent a child from coughing when necessary. If a child cannot cough, serious health issues may arise.

Respiratory illnesses are also common in children with cerebral palsy. These illnesses can cause mucus or fluid buildup in the body.

Children and infants with cerebral palsy are more susceptible to mucus buildup. Labored breathing can damage lungs, and mucus buildup can be dangerous or fatal.

Suctioning prevents these dangers because it clears the child’s airways when they cannot do so themselves.

In determining when to help clear your child’s airways, look for:

• Blocked or obstructed airways
• Blue hue to the lips or fingertips (cyanosis)
• Increased mucus that your child cannot cough up to clear
• Signs of pneumonia and other lung diseases

When is Suctioning Necessary?

You may wonder when your child needs help with suctioning. Suctioning for children with cerebral palsy is not always necessary.

Here are some clues that will help you know when it might be:

• Wet breathing sounds indicating mucus
• Labored breathing
• Loss of color in the face and flaring nostrils

Cerebral Palsy Vision Issues

It may be hard to tell if a child with cerebral palsy has vision issues because of problems with communication or movement. However, vision issues are common.

One major vision problem for children with CP is strabismus, or “cross-eyed.”

According to the Mayo Clinic, strabismus is “an imbalance in the muscles responsible for the positioning of the eyes. This imbalance can cause the eye to cross or turn out. The muscle imbalance prevents the eyes from tracking in a coordinated way with each other.”

Effects of Strabismus

65% of children with cerebral palsy have strabismus.

Children with strabismus or vision impairment will have:

• Difficulties getting around
• Challenges with recognizing objects
• Fast eye movements
• Visual field loss

Cerebral Palsy and Hearing Issues

Impaired hearing is usually present in children with cerebral palsy. This is often due to the seriousness and location of the brain injury. According to research by the NIH, up to 20% of children with cerebral palsy have hearing or language problems.

Impaired hearing with cerebral palsy is more likely if your child suffers from:

• Low birth weight
• A congenital infection
• Jaundice
• Lack of oxygen
• Intracranial bleeding

Children with hearing impairment due to cerebral palsy may benefit from speech and language therapy. These are offered by therapists who can help build speech skills, whether verbally or with sign language.

There are also voice output devices that may be useful depending on the level of hearing loss. These devices allow people to communicate through text or programmed speech.

Sometimes, people with cerebral palsy have both hearing and vision loss. Fortunately, there are specialists who design educational approaches for people who are both deaf and blind.

Cerebral Palsy and Seizures

It can be terrifying to watch your child experience seizures from cerebral palsy. Seizures are often caused by epilepsy, another condition that may also occur with cerebral palsy.

Epilepsy causes poor electrical functioning in the brain, which may trigger seizures.

The most common seizures in children with cerebral palsy are tonic-clonic (or grand mal) seizures. These are characterized by a short cry followed by muscle stiffness and loss of consciousness.

Jerking of the limbs and loss of bowel/bladder control often occur during a grand mal seizure. The person will then slowly regain consciousness.

Helpful Actions to Manage Seizures

Seizures from cerebral palsy are frightening to watch, but there are ways you can help.

Here are some suggestions from the NIH:

• Stay calm and soothe your child
• Help prevent injuries by allowing the child’s movements to happen, but clear the area of items that may cause harm
• If the seizure lasts more than five minutes, call 911
• Turn your child on their side to allow the airways to remain open
• Do not give your child food, water, or medications during the seizure
• After the seizure, let your child know what happened

Long-term Outlook and Cerebral Palsy

Living with cerebral palsy can be challenging for a child and their family. Because cerebral palsy can affect different parts of the brain, your child could face many different issues. Thankfully, there are lots of ways you can help manage your child’s condition. By understanding what cerebral palsy resources your child needs to succeed, you can help them live a healthy, productive life.