I. What is epilepsy?
Epilepsy is a common childhood disorder. It is a brief, recurrent clinical symptom caused by damage to the brain, such as twitching of the limbs, purple (cyanosis) around the mouth, and no call for help; or it may manifest itself as froze for several seconds; or it may manifest itself as sudden collapse; or it may manifest itself as shaking of the limbs; or it may suddenly nod like a hug. Clinical symptoms are varied and usually do not exceed 5 minutes. The cause of epilepsy can be an injury to the brain, such as lack of oxygen at birth, encephalitis, or head trauma. Half may not find a clear cause, and a small percentage of patients are born with a predisposition to seizures, such as certain genetic epilepsies.
2. How to diagnose epilepsy?
1. What is a seizure?
What is the context of the seizure (awake, sleeping, angry, watching TV, just going to sleep, morning)?
Does the patient have any abnormal sensations (aura?) before the seizure? Headache, abdominal discomfort, blurred vision, abnormal distress)?
Was the patient’s mind clear during the attack?
Are there any facial or limb twitches (bilateral or one-sided limb twitches, throat vocalization)?
What was the position of the eye during the seizure (up or to one side, which side)?
How long did the seizure last (seconds, minutes, hours)?
What was the patient’s state after the seizure (mental, drowsy, confused)?
What are the symptoms accompanying the seizure (tongue bite, urinary incontinence, perioral cyanosis, physical trauma)?
How many forms of seizures are there?
What is the frequency of seizures?
What are the triggers of seizures (fatigue, overeating, excessive exercise)?
2. As a family member of the patient, how should I prepare?
Determining whether a symptom is a seizure requires strong expertise and should be done by a specialist. As the patient’s family, the first task is to provide as much accurate and comprehensive information as possible about the seizure history, treatment and other aspects. The more accurate the information provided by the patient’s family to the physician, the more helpful the diagnosis and treatment will be, and the more the patient will benefit.
The information provided by the patient and family about the history (especially the seizure) is the most important basis for the diagnosis of epilepsy. Many patients are unconscious during a seizure and cannot recall the seizure; witnesses to the seizure should accompany the patient to the clinic, or at least the patient’s family should carefully understand the performance of the seizure from the witnesses before the clinic. If the seizure has been captured on a cell phone or home video camera, it can be helpful to provide it to the doctor at the time of the visit. Neither EEG nor brain imaging findings can replace clinical history information.
Parents of patients should obtain information about birth history, growth and development history, and family history prior to the visit. If currently taking antiepileptic drugs, they need to know what antiepileptic drugs (specific names), doses, and effects have been used in outside hospitals? Is the medication used regularly every day? What is the effect of the medication? How long has the medication lasted?
If relevant tests have been done before, including EEG results, imaging films and reports, blood test results, etc., they should be brought to the clinic for the doctor’s comprehensive reference.
3.Why should I have an EEG if I suspect epilepsy?
EEG is a test that records the bioelectrical activity of the brain through a special amplification technique. Even if a general EEG is performed repeatedly several times, it is not harmful to the body. The main purposes of EEG are: 1) to assist the doctor in making a diagnosis of epilepsy if “epileptiform discharges” are detected; 2) to help diagnose the type of seizure based on the location, form and frequency of abnormal discharges, and to guide the doctor in selecting the appropriate antiepileptic drugs; 3) to help the doctor determine the overall function of the brain from an electrical point of view through EEG performance; 4) to help the doctor determine the frequency of seizures. In treated epilepsy, the EEG is rechecked to help the doctor decide whether to continue taking medication. Most abnormal discharges are easily manifested in the sleep state, so a sleep EEG is often necessary. This requires the patient to be asleep at the time of the test. To do this, the doctor will advise the patient to stay awake or sleep as little as possible the night before the test (sleep deprivation).
If the EEG shows “epileptiform discharges”, the doctor will be able to diagnose epilepsy by taking into account the patient’s clinical picture and excluding other diseases. Some patients with epilepsy may have normal EEG results due to infrequent abnormal brain discharges or specific discharge sites. In this case, multiple EEG examinations are performed. So a normal EEG result does not rule out a diagnosis of epilepsy.
It is important to note that doctors do not rely on EEG results alone to make a diagnosis of epilepsy. Clearly abnormal EEG results can support the diagnosis, but normal EEG results do not rule out a diagnosis of epilepsy. What the patient has experienced and what bystanders have witnessed as the offending condition is more important evidence!
III. Treatment of epilepsy
1. What are the goals of epilepsy treatment?
Completely terminating seizures or controlling them as much as possible, avoiding serious side effects, and helping the patient to live a normal life are the overall goals of epilepsy treatment.
2. What are the treatment methods for epilepsy?
There are medications, surgical resection therapy, vagus nerve stimulation, deep brain stimulation, transcranial magnetic stimulation, ketogenic diet, etc. At present, the main treatment is medication. Some drug-refractory patients can be considered for surgical treatment.
3. Must the child with epilepsy be epileptic in the future?
In the vast majority of cases, the offspring of people with epilepsy will not develop the disease, although there is an increased risk of disease in the offspring of people with certain types of epilepsy.
4. Is epilepsy contagious?
Epilepsy is not a contagious disease. You cannot get epilepsy from contact with someone who has epilepsy.
5. How do I decide whether to receive medication?
You need to start regular medication after diagnosis of epilepsy because repeated seizures can cause damage to the brain and other body organs; also, if you decide to take medication, it means that you must receive regular medication for at least 2-3 years. It is recommended that parents talk to their doctors and consider the specific situation of each child.
Generally speaking, the drugs that can be used for clinical patients are scientifically proven and in most cases are safe, and the chances of serious side effects are small.
6. Why do doctors recommend only one drug when starting drug therapy?
The principle of monotherapy when starting treatment with antiepileptic drugs. When two or more drugs are used together (polypharmacy), the drugs may also interact with each other and increase side effects. Polypharmacy is usually considered after monotherapy has failed.
7.Why should I take medication regularly?
Once you have received medication, you should take your medication regularly every day in strict accordance with your doctor’s recommendations. Regular medication must ensure that every day and every meal during treatment is not missed, and adherence to regular medication is the key to successful treatment. If you miss a dose due to forgetfulness, you need to make up for it in time.
8.What are the key issues that patients should pay attention to during the treatment process?
Strictly follow the doctor’s instructions and take the medication regularly and on time. Do not stop taking medication or change the dosage without permission. If serious side effects occur, go to the hospital immediately and reflect to the doctor in time. Be patient until you have satisfactory control of epilepsy and find the best dose of medication. It takes a long time to find a drug dose that can satisfactorily control seizures without significant side effects.
9. What should I do at the follow-up visit?
First, remember to bring previous medical records (e.g., hospital records or outpatient medical records), which are the primary basis for the doctor’s knowledge of previous diagnosis and treatment. Secondly, give a clear account of the patient’s main conditions since the last visit to the doctor, including seizure control, medication intake (compliance), medication side effects, and major laboratory results, if necessary, in writing. Finally, make sure that you really understand the doctor’s explanation and recommendations at the follow-up visit.
10. Why do doctors recommend taking epilepsy medications when they have side effects?
In the vast majority of cases, the risks associated with taking medication for epilepsy are significantly lower than the risks associated with not controlling seizures (not taking medication). When your doctor recommends that you take your medication, it is usually because he or she believes that the benefits of taking the medication clearly outweigh the harms.
11. What are the common side effects of antiepileptic drugs?
During the first few weeks of taking antiepileptic drugs, common side effects may include fatigue, sleepiness, upset stomach feeling, dizziness, headache, or blurred vision. These reactions are usually mild. If you start taking a low dose of the drug and then slowly increase the dose, these reactions usually do not occur, or if they do occur, patients can usually tolerate them gradually.
12. Do antiepileptic drugs affect the brain?
After antiepileptic drugs control seizures, most will improve brain function in children with epilepsy.
13. How long after taking the medication can I consider stopping it?
If the patient has been seizure-free, the doctor will consider tapering off the medication after 2-5 years of taking it. The specific time to discontinue medication will depend on the specific epilepsy or epilepsy syndrome. In children with benign partial epilepsy, for example, seizures often resolve spontaneously during adolescence, so physicians may consider tapering off medications during adolescence. Some epilepsy syndromes, such as juvenile myoclonic epilepsy, are prone to recurrence after stopping medication, and even if the medication is stopped after 10 consecutive years without seizures, it is likely to recur.
14.What oral antiepileptic drugs are available in China?
The main drugs are as follows (trade names in parentheses): carbamazepine (Deltamet), valproic acid (Depakene), phenytoin sodium (Dalentin), phenobarbital (Luminal), clonazepam, nitrazepam, lamotrigine (Libitron), topiramate (Tolte), oxcarbazepine (Trelle), gabapentin (Dielix), levetiracetam (Kaipuran), etc.
15.What are the misconceptions of epilepsy treatment?
With the current treatment principles, even if you are completely seizure-free after taking medication, you need to continue a regular medication period of at least 2-3 years, and some epilepsy types even need to take medication for life. At this stage, the biggest misunderstanding of epilepsy treatment in China is the irregularity of diagnosis and treatment. On the one hand, many patients and family members do not go to formal hospitals for consultation and systematic treatment, so they take the wrong path from the beginning; on the other hand, some patients and family members lack objective understanding of the chronic and long-term characteristics of the disease, and once the seizures are not controlled in the short term, they lose confidence in the treatment, do not follow medical advice, and frequently change doctors and medications. The patients and their family members are often gullible to believe in untrue or scientifically based advertisements and hearsay, and listen to the “cure for epilepsy”, “cure for epilepsy”, “cure for epilepsy” and “cure for epilepsy”. “In addition to being duped and suffering economic losses, the disease will become more and more difficult to treat, and sometimes even serious drug side effects will occur. In reality, many patients and their families try various irregular treatments with the idea that they will be completely “cured” at once, resulting in many detours and delays.
In our country, there is also a special situation where some patients think they are taking “pure Chinese medicine”, but eventually the blood test reveals one or more western medicine ingredients. If the uninformed patient takes the same western medicine at another hospital, he or she may be poisoned by the drug, because the doctor who gave it to him or her did not know that the drug was already in the Chinese medicine.
IV. Prognosis of epilepsy
Most patients (about 70%) have better seizure control after taking medication. In 1/3 of patients, medication is not effective, and these patients may try other treatments. With the current state of technology there are still 1/3 to 1/4 of patients who are not completely controlled.
V. Seizure management
What should I do if I see a patient having a grand mal seizure?
Stay calm! Avoid fear!
Help the patient lie down and place a soft object under the head and neck. Remove dangerous objects from around the body, such as sharp objects or hard objects. Unbutton clothing, necklaces, and remove glasses, especially if they are too tight around the neck.
Turn the patient onto his or her side so that secretions from the mouth can flow out through the corners of the mouth and prevent inadvertent aspiration into the trachea; this position also prevents the tongue from falling back and blocking the airway.
Do not press the patient’s body hard, which may lead to joint dislocation, fracture or your own injury.
Do not put anything into the patient’s mouth. This is because anything sticking into the patient’s mouth can easily cause the patient to choke by accidental aspiration.
After the seizure is over, do not allow the patient to drink or eat until he or she is fully conscious.
If the seizure has lasted longer than 5 minutes, call an emergency vehicle.
Witnesses can tell the patient in detail afterwards exactly what happened. For example, what kind of convulsions? How long did it last? What did the patient do before and after the convulsion? So that the doctor can be told.
6. Daily life in epilepsy
1. Epilepsy and diet
Patients with epilepsy usually do not need a special diet and can ensure reasonable nutrition. Children with epilepsy generally do not need to abstain from eating, and the foods that normal children can eat, children with epilepsy can also eat. It is important to emphasize that overeating and drinking too much water in children with epilepsy are also triggering factors for epilepsy.
2, epilepsy and sleep
Epilepsy makes his life should be regular, with special emphasis on ensuring enough sleep, not staying up late, and developing good habits of sleeping on time. Lack of sleep is also a factor that triggers epilepsy. Occasional hand shaking in children’s sleep is a normal sleep myoclonus, not a seizure.
3. Epilepsy and learning
Most children with epilepsy can go to school and kindergarten normally. Participating in normal school life also helps to ensure a normal psychological state of the affected child, which can reduce the formation of low self-esteem and isolated personality. Normal brain thinking does not induce epilepsy. Children whose seizures are basically controlled can participate in moderate physical activities, which are beneficial to their growth and development, but the exercise should not be excessive. For children with frequent seizures that cannot be controlled with medication, they should not go to school or engage in sports activities.
4. Children with epilepsy take medication when they have other diseases
Children with epilepsy may also take other medications if they are suffering from other diseases while taking medication. If the instructions of the medication taken clearly state that it is not suitable for patients with epilepsy, the medication needs to be discussed with the doctor and should not be taken casually by oneself.
5. Epilepsy and vaccination
The relationship between epileptic seizures and vaccination is currently controversial. In general, vaccinations can be given on time when epilepsy is satisfactorily controlled (>6 months). Some vaccines (measles, diphtheria) do currently exist that may induce seizures. Attenuated vaccines are contraindicated if the shaken child has previous recurrent infections and a diagnosis of immunodeficiency disease. If certain vaccines have previously caused encephalopathy (convulsions, meaning disorders, fever), a second vaccination is contraindicated.
6. Children with epilepsy and recreational activities
The vast majority of children with epilepsy can participate in recreational activities, such as watching television, sports, and playing video games. However, the time should not be too long and should not interfere with sleep.
7. Epilepsy and psychological behavior
The psychological behavior of children with epilepsy is characterized by emotional disturbances, cognitive and learning difficulties, and limited social interaction. Fear of seizures at any time in daily life and ridicule by classmates and children make children with epilepsy feel inferior. Parents do not know much about epilepsy and have many misconceptions about epilepsy, creating a sense of shame. Some parents pay too much attention to their children and spoil them; some parents lose confidence and give up treatment. All of these are detrimental to the normal psychological development of children. Doctors should encourage parents and children with epilepsy while treating them with medication; family members should understand epilepsy correctly and build confidence to overcome the disease; schools and society should abandon prejudice and discrimination against children with epilepsy and create an optimistic environment for children with epilepsy.