Legal and Medical Resources to Empower Cerebral Palsy Families
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As the parent of 4 grown children, one of which 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. 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.
Infants who suffer injury due to a birthing trauma may experience seizures immediately after birth, depending on the severity of the trauma and cerebral injury. 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.
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.
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, 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 - Involves 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.
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.
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.
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 someone 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 the following things: duration of the episode; if your child becomes cyanotic (turns blue) or has blue lips which indicates they weren’t breathing properly; what your child was doing at the time and 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!
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. Oral 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. This device 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.
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 Desk Reference 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.
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!
NINDS “Epilepsy Information”, 28 May 2009. National Institute of Neurological Disorders and Stroke <http://www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm>
Human Anatomy and Physiology, Fifth Edition, pg 362 Factors Affecting Synaptic Transmission
WebMD, Epilepsy Health Center, Seizures – Topic Overview<http://www.webmd.com/epilepsy/tc/seizures-topic-overview>
WebMD, Seizure Types and Symptoms <http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms>
Mayo Clinic, Frontal lobe seizures, Tests and Diagnosis<http://www.mayoclinic.com/health/frontal-lobe-seizures/DS00810/DSECTION=tests-and-diagnosis>
Mayo Clinic, Epilepsy, Ketogenic diet: Can it Control Seizures in Children? <http://www.mayoclinic.com/health/ketogenic-diet/AN01887>
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