Seizures and Cerebral Palsy

By Lee Vander Loop
CP Family Network Editor

As the parent of 4 grown children, one of whom has spastic quadrapalegia cerebral palsy, I feel like I’ve experienced my share of parental stress and fears of raising 4 children and dealing with the challenges of maintaining the best quality of life possible for my daughter with CP.

I’ve experienced the heart stopping moment of having my 3rd born not recognize me after a concussion and a multitude of other parental trials and worries, but nothing could prepare me for watching my daughter with cerebral palsy experience her first grand mal seizure also known as tonic-clonic seizures.

No training, literature, insight or experience can prepare you for the heart stopping, gut wrenching experience of watching your child suffer through a seizure. Whether it be the first seizure or 50th, they all feel like the first with the overwhelming sense of fear, helplessness and frustration that comes with the inability to stop your child’s suffering.

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures or epilepsy have cerebral palsy. Additionally, although learning disabilities are common with children who experience seizures, not all children who suffer with seizures experience learning disabilities.

Depending on the severity of the trauma and cerebral injury, infants who suffer injury due to a birthing trauma may experience seizures immediately after birth. In the case of my daughter who suffered severe global cerebral insult as a result of neonatal asphyxia, she experienced 3 days of uncontrollable seizures immediately after birth.

What is a Seizure

Seizures differ, depending on which portion of the brain is involved. Nerve impulses are constantly being transmitted from brain cells and processed by neurotransmitters. Seizures occur as a result of abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of these excess impulses reach skeletal muscle fibers and trigger the violent contractions witnessed with a variety of seizures.

Groups of Seizures

Focal Seizures occur in only one part of the brain or one hemisphere. Generalized seizures occur in both hemispheres of the brain.

Atonic Seizures are characterized by sudden loss of muscle tone, particularly in the lower extremities, often resulting in falls which puts the individual at risk for head injury and other physical injuries.

Generalized Tonic-Clonic Seizures also known as generalized convulsions or grand mal seizures are commonly seen with cerebral palsy.

Tonic Seizures spread throughout the brain, and are normally followed by unconsciousness, twitching legs and arms, convulsive body movements, and loss of bladder control. A child may bite their tongue during such a seizure. The “tonic phase” of these seizures is characterized by sudden muscle contractions and rigidity (hypertonia/spasticity).

Clonic Seizures – Involves recurring and coordinated jerking movements involving both sides of the body as well as rhythmic contractions of the affected muscle groups and violent and extreme gross motor movements. I’ve had the misfortune of witnessing a tonic-clonic seizure with my daughter. She was literally vibrating across the bed with the convulsive gross motor involvement.

Complex Seizures – Involve involuntary but possibly coordinated movement such as lip smacking, chewing and abnormal oral motor activity. With my daughter I called these “birdie seizures”. The oral motor involvement she exhibited involved repeatedly opening and closing her mouth, bringing to mind a baby bird in a nest waiting for food.

Myoclonic Seizures – Characterized by sporadic jerking movements, usually involving both sides of the body, that may progress to violent gross motor convulsive movements.

Partial (focal) Seizures are confined to one part of the brain and may be simple or complex. Partial (focal) seizures result from electrical impulses from one part of the brain and are usually a motor or sensory seizure that is restricted to one side of the body. The individual remains conscious. However, if the seizure progresses to a more generalized seizure, a loss of consciousness will occur.

Petit mal (absence) Seizures – Also known as Absence Seizures with this type of seizure a child may appear to be “staring off into space”, and will be unresponsive to stimulation or their environment. I’ll never forget the “vacant stare” my daughter exhibited the first time I saw one of these seizures. It was obvious, even to me, that something was wrong. I had never witnessed such a seizure. These seizures don’t pose the same hazard some seizures do, but they can put a child at risk of aspiration if they occur while a child is eating.

Fever (febrile) Convulsions- Febrile seizures are convulsions brought on by a fever in infants and small children. During the seizure a child may lose consciousness accompanied by tremors or shaking. A majority of febrile seizures are harmless and there is no evidence to suggest that they cause brain damage. However, children who have experienced febrile seizures that are lengthy or that recur within 24 hours or children with cerebral palsy are at greater risk of developing epilepsy.
The National Institute of Neurological Disorders and Stroke (NINDS) provides a comprehensive online fact sheet on Febrile Seizures, provides a detailed and informative description of this type of seizure as well as information on diagnosis and treatment.

Simple Partial Seizures - Cause muscle twitching, chewing movement and numbness or tingling. Partial complex seizures- Are characterized by a brief loss of consciousness, behavioral, emotional symptoms, loss of memory and automatisms. Temporal lobe and frontal lobe seizures are often in this category.

Diagnosis

EEG – Your child’s neurologist will probably want to do an Electroencephalogram (EEG) if they suspect seizure activity. Although EEGs are often helpful in diagnosing some types of seizures, it may not detect all. EEG’s are typically performed in the hospital’s sleep clinic and involve placing electrodes on the child’s scalp

Brain Scans and MRI – The neurologist may order a CAT scan or Magnetic Resonance Imaging (MRI) to be performed. Although these studies don’t show the electrical impulses, they may show lesions or other possible suspected causes of seizure activity.

Video EEG – This study is usually performed overnight at a hospital’s sleep clinic. It involves a video camera and constant EEG monitoring though out the study. With the video and EEG combined, the physician can collate any suspected abnormal physical motor occurrences with the EEG, better identifying the seizure activity with the physical manifestations.

Document It

If you suspect your child may be experiencing seizures, keep a journal and document episodes or behaviors you suspect to be seizure related. If possible have some one video tape the episode. This will give your child’s pediatrician or neurologist insight into what you are witnessing, since it’s unlikely your child will experience a seizure during your 15-30 minutes visit with the physician.

In the case of documentation, note duration of the episode, did you child becomecyanotic (turn blue) or have blue lips which would indicate they weren’t breathing properly, what was your child doing at the time, note any abnormal behaviors your child may have exhibited that made you suspect the behavior as seizure activity.

If your child already has a diagnosis of seizure and you don’t feel that their current medication is managing their seizures effectively, again, keep a journal of any suspected break through seizure activity you may see. There are many medications and combinations of medications that can be used for seizure control. If the seizures are adversely impacting your child’s quality of life, don’t give up. Persevere and continue to question your child’s physicians until you find the right medication or combination of medications that offers a better level of control. In my daughter’s case, I was told, considering the severity of her cerebral injury, she would never be seizure free, and that she most likely experienced silent seizures even during sleep. After birth she was prescribed an anticonvulsant which seemed to do little to control the seizures. It just seemed to “zone her out.” This was not acceptable to me and I persisted with the neurologists until they changed her medication and we found a combination that proved effective, at least during her waking hours, without the side effects that she seemed to experience with her initial medication. I was amazed at her new level of awareness after the change. To this day that same combination of medications has continued to provide an optimum level of control. Never give up!

Treatments and Medications

• Protect a person from harm during a seizure. One of the complicated risks of seizures is that further damage can occur in the brain with severe seizures. The individual can also be hurt while falling or during spastic episodes resulting from grand mal seizures.
• Anticonvulsant medications are normally prescribed in the management of a seizure disorder. Tegretol, Phenobarbital, Dilantin, Klonopin, Valium and Topamax are several examples of medications that may be prescribed.
• Vagus Nerve Stimulation Therapy – This therapy is relatively new and involves a surgically implanted battery, with leads threaded under the skin and attached to the vagus nerve. Vagus Nerve Stimulation involves a device which sends short bursts of electrical energy into the brain via the vagus nerve.
• Ketogenic Diet – This form of therapy involves a diet high in fats and low in carbohydrates and makes the body burn fat for energy instead of glucose. This form of therapy has been proven effective in some children in the prevention of seizures.

Side Effects

Every medication involves side effects. Some children may tolerate one medication but another child may experience intolerance or contradictions with the same medication. In my daughter’s case, I was in a position where I had to decide what side effects were acceptable and which weren’t. With the initial anticonvulsant, my daughter seemed unresponsive to her environment and “disconnected” from the world. That was not acceptable to me, but the new medication offered its array of side effects also. I remember researching the new medication in my boss’s Physician’s Desk Reference (PDR) and calling up the neurologist almost frantic!

Our neurologist was exceptional, and we communicated with ease. When I told him of my research in the PDR and my concerns (I think I heard a slight groan) he patiently explained to me that yes, the side effects and contradictions I was reading were cause for concern but the PDR had to list every incident of contradiction so the ratio seemed out of proportion. In most cases, the incidents were more a rarity then the norm. He assured me of the safety of the new medication and told me what would constitute severe side effects or contradictions that would warrant intervention. I thanked him for his time and for taking my call. My baby was a part of my world for the first time and was showing a new level of awareness. That went far in outweighing the unavoidable side effects and possible contradictions that came with the new medication. This isn’t meant to discourage a parent’s research, just the opposite. Educate yourself on all medications. That’s the only way you make an INFORMED DECISION.

There is much research being conducted and many clinical trials occurring in the field of neurology and seizure management. Many individuals are living seizure free as a result of the advances made in Neurologic medicine.

Questions to Ask Physician

• You may have a thousand questions in your head about your child’s possible seizures, medications, or management, but you won’t think of half of them during your appointment with your child’s physician or neurologist. Write them down as you think of them!
• Ask your physician what side effects to expect with any medication and what contradictions you need to be aware of and what to do in the case of a serious adverse side effect.
• Should your child take the medication with or without food? Make your child’s neurologist aware of any other medications your child may be on, whether it’s seizure-related medication or not.
• Make sure you’re aware of any blood work or lab work that needs to be done and the frequency. Many anticonvulsants require blood work to monitor the levels of the medication in the blood and to monitor possible kidney and liver function in relation to the medication.
• Some children experience seizures that may be triggered by different environmental or dietary factors. Ask your physician if there are any environmental factors or dietary issues that you need to be aware of.

Cerebral Palsy Survival Guide

Check out our tutorial video on how to use our Cerebral Palsy Survival Guide!

Toilet Training Children with Cerebral Palsy

By Lee Vanderloop

Perhaps nothing is more important to a child as he or she grows older as the ability to control their bowels and bladder. With successful “potty training” comes freedom to move into the wider world, such as school or day care. It is a major developmental milestone for any child. For a child with cerebral palsy, it can be monumental.

Children with cerebral palsy frequently suffer from  urinary incontinence and constipation, which can result in bowel leakage. Both of these functions are controlled by muscles, so the degree of muscle tone or strength in a child with cerebral palsy will in large part dictate how able they are to control their toilet functions.

Toilet training is expected to be obtained by the chronological age of five in non-disabled children, and by the cognitive age of five for a child with a developmental disability. Children with moderate to no level of learning disability or mobility issue were able to achieve a level of continence at age three, according to a 2006 hospital study. The study recommended that regular toilet training for these children should start around then.

In children with more severe developmental and mobility challenges, the study determined that the probability of continence is extremely diminished after the age of eight. For these children, incontinence products and  external collection devices are available. Also, some studies have shown that intermittent catheterization combined with medication may also be a good option for some older children.

Types of Incontinence

• Stress Incontinence – Occurs during activities such as coughing, sneezing, or exercise.
• Urge incontinence – Involves strong, sudden urges to urinate flowed by bladder contraction and involuntary loss of urine.
• Fecal/Bowel incontinence – The inability to control the passage of stool.
• Overflow incontinence – Occurs when the bladder cannot empty completely.
• Mixed incontinence – Involves multiple types of incontinence.

Bladder Function

The inability to control the release of urine is called bladder incontinence, or neurogenic bladder. The bladder and sphincter work in harmony to control urine storage and release. The sphincter is a group of circular muscles around the opening of the bladder and must be able to squeeze to prevent urine leakage. The bladder wall muscle (detrusor) must stay relaxed so the bladder can expand. In many children with cerebral palsy this group of muscles may be weak.

Incontinence can take the form of bed-wetting, uncontrolled urination during physical activities, or slow leaking of urine throughout the day.

Evaluation

The first step is to get a full evaluation from a urologist, which is a doctor who specializes in urinary issues. The doctor will want details about your child’s incontinence, so it’s a good idea to keep a three-day diary of out-puts, including amount, time of day, stressors, activities, meals, foods, liquid intake and anything else you think might be helpful.

Common Tests for Bladder Incontinence Include:

• Uroflowmetry to look at lower urinary tract functions.
• EMG to look at the pelvic floor.
• Cystometry – a moderately invasive test and dependent on a cooperative child, cystometry in children evaluates the bladder muscle called the detrusor that contracts to squeeze out urine and then relaxes.
• Urine test – the doctor will also test the urine for signs of a urinary tract infection, which can also cause bladder incontinence. Repeated infections can lead to a conditionvesicoureteral reflux, where urine travels backward into the kidneys. Another source of infection occurs when the bladder doesn’t empty completely, leaving a small amount of  urine in the bladder that can collect bacteria. A 1993 London study suggests that children with cerebral palsy have increased incident of lower urinary tract symptoms.

Treatments:

Medical treatments for incontinence may include special exercises, biofeedback, prescription drugs, surgery, or surgically implanted devices to replace or aid muscles.

Basic to all these other strategies, however, is proper toilet posture. The child needs to be able to sit securely on the toilet or the potty chair. Buttock support, foot support and comfortable hip abduction are necessary to enable a sitting posture that keeps the child relaxed and prevents activation of abdominal muscles and the simultaneous co-activation of pelvic floor muscles. A therapist trained in muscle re-education can help a child learn this posture and other techniques necessary for relaxed voiding to completion.

After physical issues such as anatomical abnormalities or pelvic floor dysfunction have been ruled out, most children can be successfully treated with urotherapy and muscle training.

Standard Urotherapy

Urotherapy in this context is not to be confused with the “urotherapy” that claims to treat disorders by drinking urine. Standard, or conventional, urotherapy for children with voiding problems originated in Scandinavia in the 1980s. It describes a non-surgical and non-drug approach to treating lower urinary tract dysfunction and is defined as a bladder re-habilitation program with the goal of correcting filling and voiding problems. It usually involves education of the child and family, routine hydration, and regular voiding regimens and bowel programs. It may also include pelvic floor muscle awareness activities and biofeedback training

It’s recommended that initial steps in urotherapy should always involve education of the child and family regarding bladder and bowel dysfunction, timed voiding, adequate fluid intake, aggressive management of constipation and hygiene issues (changing of wet clothing, containment products, skin care and correct wiping technique after toileting), as well as treatment expectations and a timeline.

Toilet Training Methods

The Diagnostic Center, Southern California has developed an approach toward toilet training a child with developmental delays that it calls “habit training.” In this approach, a mental picture, signal or visual cue of a toilet becomes linked in the child’s mind with a need to void. The Center has a six-page hand-out that takes you through the steps and provides other good suggestions.

Another study, this one published in 2010 in the Journal of Urology concluded that wearing a programmable wrist watch was successful at helping many children manage daytime bladder control problems. The study also suggested that timed bathroom trips are a crucial part of urotherapy for daytime incontinence.

Drug Treatments

Drugs used to treat bladder or bowel incontinence target the muscles used in these functions. All have side effects. As of 2009, there were no approved drug therapies known to the International Children’s Continence Society. The ICCS recommends that alpha blockers and Botox may be considered alternatives only when other treatments, such as behavioral therapy, have failed, and then only with appropriate parental counseling.

Surgical Options

There are a number of surgical interventions that treat incontinence caused by an underlying physical abnormality or disorder. The Mayo Clinic offers a comprehensive listing and descriptions of them.

Of note is a study conducted by the Women’s Specialty Center of Central Maine Medical Center that showed a procedure known as sacral neuromodulation which has the potential as a valuable tool in treating incontinence associated with CP.

Bowel Function

The ability of a child to learn to control bowel function, like urinary function, depends on degree of muscle control and mental awareness of feelings to void. The age at which this happens will depend on the developmental age of the child and muscle tone.

Bowel function is controlled by muscles of the anus and sphincter. An inability to squeeze the sphincter tightly enough can lead to leakage. Chronic constipation,  in which stool blocks the rectal passageway, can lead to damage to the muscle walls, worsening the ability to close tightly. So again, a child with muscle tone issues will likely have some bowel control issues.

The first step, of course, is a full medical evaluation by a specialist in bowel issues. These specialists are called gastroenterologists. They will rule out physical anomalies such as blockages, and make treatment decisions about surgeries and medications that might help.

Constipation affects many children with cerebral palsy. Laxatives are not recommended. Instead, dietary changes and  making sure your child gets plenty of liquid is the first approach. A dietitian or your pediatrician can recommend other approaches to constipation.

Bowel retraining, consisting of exercises and biofeedback, can help a child strengthen those muscles and to become aware of the urge to defecate.

In some cases, the use of special fecal collection devices to contain the stool and protect skin from breakdown might be recommended. These devices consist of a drainable pouch attached to an adhesive wafer. The wafer has a hole cut through the center, which fits over the opening to the anus.

Additional Resources

International Children’s Continence Society
http://www.i-c-c-s.org/ provides in-depth information on “The Management of Dysfunctional Voiding in Children” – A Report from the Standardization Committee of the International Children’s Continence Society. The society’s discussions resulted in guidelines on the assessment, non-pharmacological and pharmacological management of dysfunctional voiding. The final includes relevant research when available as well as expert opinion on the current understanding of dysfunctional voiding in children.

European Urology, Editorials, Twenty Years of Urotherapy in Children: Have We Learned?

Piet Hoebeke, Publ. online 4 January 2006 pgs 426-428

http://www.europeanurology.com/article/S0302-2838(05)00854-7/fulltext

The Agency for Healthcare Research and Quality under the U.S. Department of Health & Human Services lists guidelines in the Management of neurogenic bladder in children. In: Guidelines on pediatric urology.

http://www.guideline.gov/content.aspx?id=14433

It’s the opinion of the International Children’s Continence Society that the most comprehensive programs incorporate continued elimination education, continued voiding diaries and exercises between possible biofeedback sessions

http://i-c-c-s.org/index.php?option=com_content&task=view&id=39&Itemid=55

Secondary Conditions and Disability, Margaret A. Turk, The National Academies Press NAP

http://www.nap.edu/openbook.php?record_id=11579&page=185

http://kidney.niddk.nih.gov/statistics/uda/Urinary_Incontinence_in_Children-Chapter12.pdf

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org