Managing seizures in children with CP: Is the Ghana Health Service monitoring?

They were sleeping at night when they suddenly heard a consistent, repetitive sound coming from the child’s bed. When the mother checked, the black part of the child’s eye had all gone; she was twitching and did not respond to her surroundings.

Scenario:

The mother, out of panic, poured cold water to revive the child, but nothing happened; the child didn’t even shiver when the cold water touched her skin.

The couple proceeded to the nearest hospital, where they were told the child was convulsing. Before they could do anything medically, the baby was awake and crying hysterically.

The nurse on duty went ahead to give the child rectal diazepam to help make the child relax and sleep.

The next day, the doctor requested some laboratory tests, including a malaria test, a full blood count, and a urine test.

When the test results came, they noticed she had malaria parasites, so they went ahead and treated her for malaria.

The child was two years old when she experienced her first seizure. Little did the family know that there was more to come.

For the purposes of this article, we chose the name Ama for the child. Ama lived with a condition called Cerebral palsy.

Cerebral Palsy:

Cerebral palsy is a neurological condition that affects the movement and sometimes the speech of children. It has been identified as the number-one cause of disability in childhood.

In the space of one month, Ama had a seizure again, and this time the family decided to take her to a bigger hospital for a proper investigation into what was happening to her.

She had never experienced a seizure in her first two years of life; why now were some of the questions running through the mind of the mother?

At the bigger hospital, one doctor, without any diagnostic test, prescribed a medication called phenytoin, which was going to stop the seizures. She told the parents to give it for 30 days and come back to see her.

After 30 days of the medication, the parents stopped, based on the doctor’s instructions, but they did not brace themselves for what was to come. They noticed a physical change in Ama’s face; her eyes had sunken, especially her left eye, and she experienced frequent twitches.

Decision:

This made them decide to go back to the hospital to see the particular doctor; it was at that point that the doctor said, ‘I will have you do an MRI to know whether we continue the medication or not’.

The doctor’s responses that day didn’t go down well with Ama’s mother, so she decided to go and read further about the prescribed medication given earlier by the doctor, and the side effects of the medication shocked her.

Listed as a side effect of this medication were sunken eyes and other horrible symptoms that no parent would like their child to experience.

Seizures:

Seizures are sudden, uncontrolled electrical disturbances in the brain that can cause changes in behaviour, movements, feelings, and consciousness.

In Ghana, when a child has a seizure, it is referred to in the local parlance as “3soro aka no.” The occurrences of seizures are usually spiritualized.

Ama’s mother made a decision not to put her child on seizure medications, even though a lot of the medics she came across advised her otherwise.

She said that at one time, when Ama had just recovered from a seizure, she met a doctor who said, "Oh, your child has cerebral palsy and she is having seizures; give her Keppra.” (Keppra is one of the seizure medications.)

No tests were done to know what was really causing the seizures because most doctors believe that once a child has Cerebral Palsy, seizures occur.

“I will refer to Ama’s mother as Adwoa for the purposes of this article. Adwoa said she refused to put her child on any seizure medication and got the bashing for it from medical doctors and a lot of health workers alike”.

Adwoa, however, was relentless and boldly told the medical doctors who suggested medication that she would not give medication without any justification. Besides, she said she had seen so many parents whose children had been on medication for 10, 20, or more years and still experienced seizures.

She said that given the “dangerous side effects of some of these medications, I would stay away from them rather than give the medication and still deal with the seizures.”

Beyond the borders:

Adwoa had an opportunity to see a neurologist with her daughter in the United States of America, There, the doctor requested an EEG (electroencephalogram).

An electroencephalogram (EEG) is a test that measures electrical activity in the brain. This test also is called an EEG. The test uses small metal discs called electrodes that attach to the scalp. Brain cells communicate via electrical impulses, and this activity shows up as wavy lines on an EEG recording. Brain cells are active all the time, even during sleep.

An EEG is one of the main tests to help diagnose epilepsy. An EEG can also play a role in diagnosing other brain conditions.

Adwoa said, to her surprise, that she was told that there were no seizures happening in her daughter’s brain. Her child did not require any medication.

Revelations:

According to the neurologist, what happened to her child that got her muscles stiffened was called dystonia. Dystonia is an unintentional, sustained muscle contraction leading to abnormal postures.

He went further to explain that a part of the brain called the basal ganglia, a group of brain structures that control movements, decision-making, reward, and addiction, is usually the part where there is injury, and thus a child with cerebral palsy would have his or her muscles contract in an unusual way.

The neurologist also said that there were medications such as Baclofen, which was used to relax the muscles, but gave her the option of using the medication or trying other natural means to help her child’s muscles relax.

“So, my child did not need seizure medications after all,” Adwoa said.

Many children with cerebral palsy in Ghana are put on seizure medications without any thorough testing done; they are on medication for the fact that they have cerebral palsy, and children with cerebral palsy are prone to seizures.

Most parents who refuse the doctors’ suggestions to put their children on such medications are scorned.

One parent who shared her experience on the Special Mothers Project WhatsApp platform (an advocacy and parent support group) said her child is on about 10 different medications.

She said, “If my daughter has seizures five times a week, for five times a week, I am required to do a malaria, full blood count, urine, stool, and sometimes meningitis test; most of the test results come out negative.”

She said the doctors don’t consider that I sometimes use the money that we are supposed to use to feed our family to do these laboratory tests, which always come out negative.

At the last count on the Special Mothers Platform, over 20 parents have lost their children, and most of the time, when asked what happened, they say, "Oh, the child had a seizure and was in the hospital for a number of days, and then he/she gave up.

One parent believed that there may be underlying causes for the occurrences in a child with cerebral palsy, but it seems there has been no research to ascertain that.

“It could be that the child has malaria, an infection somewhere, perhaps an ear infection, or pain somewhere, but no one checks that,” she continued. For instance, if my child is sick, it takes me a long time to know that the child is sick. Sometimes, I get to know my child is sick only when he has a seizure because, unlike a regular child, my child is not able to say when he is in pain.

She believed that a lot of children with cerebral palsy had lost their lives due to a doctor’s false assumption and asked, “Is the Ghana Health Service monitoring this?”