Understanding Epilepsy

We find out more about epilepsy, a common neurological disorder
By Child Magazine

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Imagine a light bulb that starts flickering for no reason. That was how 17-year-old Kai Fitchen’s neurologist explained his seizures, which started at age nine. His mother, Bobbie, recalls, “At first I did not realise what was happening. He had recently had tonsillitis with very high temperatures and his seizures were happening at night so I initially thought they were some form of night terrors related to this. But he would be very tired the next day and they continued long after his tonsillitis had passed.” Bobbie eventually spoke to a psychologist thinking Kai might need psychotherapy for the terrors but after a phone consultation she was referred to a neurologist who diagnosed Kai with epilepsy and put him on medication to help control the seizures.
 
Epilepsy is a neurological disorder characterised by repeated seizures*, which are a result of abnormal electrical signals in the brain. “The highest incidence of seizures is within the first year of life, with approximately 120 cases per 100 000, dropping to 40 to 50 cases between one and 10 years and reduced to 20 in 100 000 in the teenage years,” says Dr Tiziana Aduc, paediatric neurologist and paediatrician at Sunninghill Hospital in Johannesburg.
 
Seizures (also known as fits) are classified as partial/focal – originating from one specific area of the brain – or generalised – involving all areas of the brain. According to the World Health Organisation they can vary from “the briefest lapses of attention or muscle jerks, to severe and prolonged convulsions (violent and involuntary contractions, or a series of contractions, of the muscles). Seizures can also vary in frequency, from less than one per year to several per day.” Flickering lights, stress, illness, heat, anxiety and skipping medication may trigger seizures.
 
Focal seizures are generally less severe and may include sensory disturbances (strange feelings, smells or tastes sometimes referred to as epileptic auras), numbness, jerking, twitching, tingling, lip smacking or staring. Generalised seizures are more obvious and complicated, with characteristics ranging from subtle twitching and jerking to complete loss of consciousness, body stiffening, uncontrollable shaking and violent muscle contractions.
 
According to Western Cape paediatric neurologist Dr Adri van der Walt, the causes of epilepsy are largely cryptogenic (no known cause) but can include congenital defects; neurological trauma, such as brain injury or hypoxia; obvious underlying diseases or disorders, such as cerebral palsy or tuberculosis; or in the odd case there will be a hereditary factor. “Diagnosis of epilepsy is largely clinical,” says Van der Walt. “We do use EEGs but a routine EEG is only positive in 80 percent of patients.”
 
Moving forward
 
“Medication is normally the best course of treatment and 70 percent of patients will respond to the first prescribed drug. A small subgroup will require a combination of two or more medications,” says Van der Walt. “There are no supplements that can treat epilepsy, although certain ones can be used to treat seizures caused by an abnormality in the system. This, however, is the case in a very small and rare group.”
 
Children with epilepsy can be put onto a ketogenic diet (high fat, moderate protein, low carb), but this is usually only prescribed when the medication route is not working as sustainability is a problem for children who don’t always buy into the idea of abstaining from yummy foods long term. “All diets must be run by a dietitian in conjunction with a neurologist,” says Van der Walt. “Parents should not decide to take this into their own hands.” Sometimes surgery is necessary to treat seizures.
 
Fighting fear
 
Bobbie counts her son Kai as fortunate “because his seizures only happen at night”, allowing him more freedom to do daytime activities such as mountain climbing. However, even without daytime seizures, Kai still felt very different from his friends and withdrew from them, avoiding sleepovers and sometimes struggling with the fear that a seizure could strike at any time.
 
Noëline de Goede, national director at Epilepsy South Africa says, “There is still huge discrimination against children and adults with epilepsy. A lot of children are placed in special schools when they would be able to prosper at a mainstream school.” This makes educating teachers and peers imperative about epilepsy.
 
Ten-year-old T’mellia Ronnie from Cape Town was diagnosed with epilepsy when she was five. She is repeating Grade 3 this year in a mainstream school with a smaller class size – 18 learners compared to the 36 at her previous school. “T’mellia copes better in a smaller class environment,” says her mother, Alex, “and her current school is more knowledgeable about epilepsy, which helps. Most mainstream schools still don’t know enough about it.”
 
Alex is working to increase awareness about epilepsy and to let people know that children with epilepsy are not different. “T’mellia is just like every other girl her age. She does modelling, athletics and she sings. The only difference is that she takes tablets every morning and night to prevent her seizures.”
 
Says Van der Walt, “People fear things they don’t understand, so the best thing we can do is to educate others on epilepsy and how to manage seizures.”
 
*Seizures can also be symptomatic of other diseases and disorders and their presence alone does not indicate epilepsy.
 
The truth about epilepsy
 
  • Calling someone an “epileptic” is derogatory.
  • People with epilepsy are not crazy, mentally ill or possessed.
  • Epilepsy is not contagious.
  • Epilepsy is not always inherited.
  • People with epilepsy will not swallow their tongue during a seizure.
  • People with epilepsy can lead a normal life although they should never swim alone or lock the door while bathing.
 
What to do if you witness a seizure
 
Noëline de Goede, national director at Epilepsy South Africa, shares this important information:
 
1. Remain calm and make a note of the duration of the seizure.
 
2. Clear a space around him.
 
3. Loosen tight clothing and neckwear and remove spectacles.
 
4. Cushion the head and position the person on his left side, top leg bent, bottom arm slightly extended.
 
5. Wipe away excess mucous to facilitate breathing.
 
6. Reassure and assist until he has recovered or becomes re-orientated, then allow him to rest or sleep.
 
7. Do not restrict or restrain him.
 
8. Do not move him unless he is in immediate physical danger such as in a busy road.
 
9. Do not put anything between his teeth or in his mouth, this will cause injury.
 
10. Do not give him anything to eat or drink during the seizure.
 
11. Do not give him any medication unless instructed to do so by a neurologist.
 

12. Only seek medical attention if: the person has injured himself badly; it is his first seizure; it is a repeat seizure that lasts longer than five minutes; the seizures are repetitive and unrelenting.

Comments

Jodi-Leigh Reynolds wrote 40 weeks 1 day ago

I have a 7 year old little boy with frontal lobe epilepsy and who is ADHD. I am looking to join/start a group where mums in similar situations can meet without kids. I need to talk to mums who can relate and who have kids who are similar to my child. Some of his peers don't understand him and that has caused him to shy away and hate school. I need help on how to help him. Please.

Anonymous wrote 1 year 41 weeks ago

My son is 8 years old; he went to a specialist yesterday and we were told that he gets mini seizures (Petit Mal) where he would completely shut down. They recommended that we make an appointment with Dr Aduc or Dr Williams - does anyone have any feedback with regards to these doctors?

Anonymous wrote 5 years 33 weeks ago

My son is 9 years old and I had to take him out of school this year before the first term ended. He has a terrible aggressive epilepsy and I decided to give him home schooling instead, which has not helped much because he always gets angry.

admin wrote 5 years 33 weeks ago

Please take a look at our Dealing with Difference guide, which has contact details for epilepsy support groups around the country: http://www.childmag.co.za/content/3d-guide

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