Note: This post was originally published on November 20, 2017
Anna Carlsson is a Twitter friend of mine from Sweden, the mother of a 6-year-old boy with epilepsy. She kindly agreed to an interview to talk about the impact that epilepsy had on her, her son, and her family.
I have done some editing for clarity, but have not changed any information.
Q: How old was your son when he was first diagnosed with epilepsy? How long ago was that?
He was 2.5 years old. This was 4 years ago.
Q: Were you there when he had his first seizure? What was that like?
Knowing what we know now, we understand that he had seizures early as a baby at the hospital. But he was 2,5 years when it first happened at home.
We had just gone to bed when my husband heard some strange noise from the bedroom in which our son and his twin brother slept.
“hmmm?” I mumbled.
“Anna please come, come now, he is not fine, not at all. There is something wrong.”
I woke up and saw how our son’s eyes were moving about and not seeing, he drooled, the body twitched. I recognised the movements from when he was a baby and the scary situation at the hospital when he was a baby.
“He is having a seizure, we need to call ambulance.”
We called for the ambulance and it was long minutes before they arrived. Meantime he got blue skin tone and full seizure with the whole body. The ambulance was given the information about his condition as a baby with Enterovirus. My husband followed with the ambulance. In shock I watched when they left our house. The seizure was not stopped during the time to the hospital and he was in seizure for more than 20 minutes. A long time.
This was 4 years ago. Still I get upset writing about it. Since he nearly died in hospital as a baby my mind expected the worst and my anxiety was high. All feelings from when he was 8 days old reemerged.
One seizure is no seizure according to the health care [note: a diagnosis of epilepsy requires at least 2 seizures, at least 24 hours apart]. So no action then. We were worried it would happen again. And so it did. After 3 turns with the ambulance he was put on medication – both daily medication and emergency medication to stop a seizure.
Q: How was your family affected?
We adults were devastated and the whole 6 person family was affected. Least affected was the son with epilepsy. His brothers and sister saw some seizures and his twin said that he felt bad in the stomach, as when the swings move to fast. When we asked our oldest child how she feel about having a brother with a condition she tells us, that’s no big deal, they are all trouble.
Epilepsy has changed our life in the way that we are always ready for a new attack and we don’t sleep well at night. We sleep every other night in our son’s (and his twin brother’s) bedroom ready to medicate when necessary. We have Diazepam ready in a lot of bags, at school and in jackets. I always take the chance to educate others about epilepsy when given.
There is still so much stigma and peculiar thoughts about epilepsy and seizures. Some think the problem is only during the seizure and others that a person with epilepsy is less intelligent or strange. It can be so different between different persons. It affects a lot of things we do during the day, and at night. Negatively but also positively since you get a lot better to enjoy the good days or periods.
Since our kid has both epilepsy and developmental language disorder (language impairment) we try to have a slow pace with our language, use pictures and sign language and give him the time for answers. He also need to be prepared for changes and goodbyes. We try to get the stress down in daily life. We get in touch with health care a lot more frequently now than before. Thank so much for Google maps to find all locations we must go to.
Q: What do you want people to know about epilepsy?
Epilepsy is not one condition that’s all the same all over. All individuals have a different profile. There are many types of seizures.
Epilepsy affect language and memory. With normal first aid help education, you will come a long way to help if someone is having a seizure. Put something soft under the head, let the person rest after the seizure in recovery position [note: rolled over on their right side]. Call ambulance if it is the first seizure or it does not break after 5 minutes.
Do not lift a person with seizure to another location. There can be risk of vomiting after a seizure. Make sure the area around the person is free, both from staring persons and from objects. The person can be confused, wet his pants and feel vulnerable. Let the person recover in his own (a slow) pace. Do not leave the person alone after seizure, more can follow. Keep a light touch of the person during the seizure for comfort and let the person know you are there.
Some people are seizure free with medication, others get many seizures every day. Some get short some get long seizures and there are different types. Death can follow from epilepsy, it is rare but exists (see SUDEP).
There is no cure for epilepsy since the reason for seizures are not understood yet. Please give money for finding better medication and the root cause for seizures.