A Storm in the Brain

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May 19, 2015

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The first time my daughter had a seizure, we were on a train to Mumbai. Moy Moy was five years old, I was alone with her and our other two young children, and I had no idea what was happening. She had just fallen asleep on the lower berth, and I watched, helplessly, as her little body contorted, her head turned to one side, and her eyes opened though her gaze was blank and unfocused.

I was terrified. Luckily, it was over in less than a minute. Even more fortunate, it was the only one she had on that journey. When we reached Mumbai, I called our pediatrician in Dehradun and described what had happened. She told me Moy Moy most likely had a convulsion and not to be too worried.

“We’ll sort it out,” she assured me.

Easy to say. According to the Epilepsy Foundation of Metropolitan New York, developmentally disabled children who have seizures have a 40 percent chance of getting them under control with medication, though medical opinion on this statistic varies widely. We had no idea of the journey we had just embarked upon, nor did we realize that what was happening to Moy Moy was very common among kids with special needs. In fact, according to the foundation, a developmentally disabled child is four times likelier than a typical child to have an unprovoked seizure by age 5.

Over the next few months, Moy Moy had many more seizures. Some were brief, lasting only seconds; others were long and intense. One awful day, she had sixteen seizures in a row. We tried one medication after another; our doctor prescribed different combinations of drugs and different dosages at different times of the day, searching for the perfect ‘cocktail’ that would provide the most relief.

But even though getting Moy’s seizures under control was more complicated than our pediatrician had prepared us for, the attitude of casual confidence she instilled in us has been a blessing and a source of strength and courage over the past 20 years.

The first time a child has a seizure (also often called “fits” and “convulsions”), it is deeply distressing for everyone. Something completely beyond your control seems to enter your child’s body and take it over. It is totally natural to be frightened and upset. And yet, though you can’t control the fits, you do want to try to control how you respond to them.

I realised early on that our response made all the difference both for Moy Moy and for those around us. As her epilepsy did turn out to be a life-long challenge, it was really important not to make it into a drama, nor to frighten those around us into thinking she was now both a fragile flower and a ticking time-bomb.

I’ve seen families who respond like that. I remember one kid whose seizures, beginning at the age of three, used to bring the house down. Her mother would shriek and cry and hold her tightly as if she were about to die in her arms. When the fit subsided, the father would rush out to buy her treats and she was pampered and handled with kid gloves. Nobody was allowed to get cross with her about anything for fear it would set her off. She soon realised how much power she had in the family and, predictably, she became a little tyrant. It would have been funny, if it hadn’t been so sad, for both her and her family.

So if your child has seizures, try not to make a big fuss about it. Stay close while the fit lasts, calmly whispering words of encouragement: “I’m right here, sweetheart. It’s ok. Mommy’s here.” Your matter-of-fact acceptance of what is a temporary disturbance will help others in your family and community also take it in stride.

Seizures are sometimes called “a storm in the brain” and they often cause sudden and involuntary contraction of a group of muscles. A child having a tonic-clonic seizure may cry out, lose consciousness, fall to the ground and convulse, often violently. A child having a complex partial seizure may appear confused or dazed and will not be able to respond to questions or directions.

However, a fit can also be as subtle as a numbness of a part of body, a brief loss of memory, sparkling or flashes in the visual periphery, sensing an unpleasant odour, a strange sensation in the stomach or feeling afraid. Moy Moy sometimes gets “absence seizures” in which she suddenly goes blank. Her eyes are open but she is clearly not seeing anything. Some children can experience dozens such seizures in a single day. It’s important to bring this to your doctor’s notice because it can affect a child’s learning.

In some cases, a seizure is preceded by some of the sensations described above. These can serve as a warning to the child that a convulsion is about to occur. These “warning sensations” are called an aura. Often, with children who have seizures, it is the parents who get the aura. Many parents (I am one) say they just know when their child is about to have a fit, and they move close to the child to support her when it occurs.

The movements of the body during a fit are involuntary and should never be prevented. The common belief that something should be placed in the child’s mouth to prevent biting the tongue is unfounded and dangerous; forcing someone’s mouth open can cause injury and adds to the child’s feeling of being under attack. Make sure the child does not hurt himself by falling or rolling on anything sharp and, if possible, turn her on her side so that any secretions from the mouth can come out naturally.

After a seizure, your child might be sleepy and confused, though a few children (like Moy Moy) seem to take it in stride and resume their normal activities almost immediately. Be flexible and patient and take your cues from your kid.

Epilepsy is a common neurological condition, and anywhere from 50 to 65 million people worldwide live with it. With medication and simple, common-sense precautions, it need not be a handicap or prevent a person from living a full and normal life. But as a parent, it’s your job to make sure that your child grows up feeling no different from her friends. It’s your attitude that will make it happen.

When there’s a storm outside, we get our umbrellas and dress accordingly. A storm in the brain is no different.

The information in this column is based on the author’s 20+ years of experience raising and working with special needs children. Kindly consult a doctor for a professional medical opinion.

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Written By Jo Chopra

Jo Chopra McGowan is an American by birth and a writer by profession. She is a former criminal (peace movement/anti-abortion activist jailed in America on a dozen occasions), a mother of three, and has lived in India for the past 33 years with her Indian husband, saas, masiji and assorted other joint family-wallas.

She is a co-founder and director of the Latika Roy Foundation, a voluntary organization in Dehradun for children with disability. She also trained as a lay midwife, is amusingly fluent in Hindi, and loves public speaking, opera, photography, reading, cooking and wine.

See all articles by Jo
  1. Cathleen Chopra-McGowan

    The title of your essay, “A Storm in the Brain,” is so poignant. There are so many things that we can’t control or understand, but your essay gave such valuable advice for how one can still be supportive and take care of someone who has epilepsy. Many of your suggestions are also useful beyond just epilepsy– paying attention to warning signs, auras, being attuned to the different after effects– these are helpful for so many storms: seizures, panic attacks, etc. This is a great essay. Thank you for writing it!

    • Jo Chopra McGowan

      Oh, I just saw this! Thanks so much, Cathleen. And yes, you are so right that the suggestions translate to different situations . . . temper tantrums, too!

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