My partner and I (Manuela), were overjoyed when I became pregnant with our daughter. During my pregnancy, we were asked about abnormalities in our families, but we never thought of epilepsy, despite my partner’s mother and sister having it. This is how I experience being mother to a daughter with epilepsy and how it affects our daily lives.
The first seizure
Our daughter was 15 months old when she had an ear infection for the umpteenth time, accompanied by a high fever. I had already kept her out of daycare a few times, but this time I decided to take her there anyway and hoped that a suppository would bring the fever down and that everything would be fine. When I arrived with my daughter, I told them to let me know immediately if anything went wrong so that I could come from work and pick her up. Two hours later, I got a call telling me that my daughter was running a very high fever. I went to pick her up right away. At the daycare center, they explained that my daughter’s eyes had rolled back in her head repeatedly and that she had collapsed a few times. They thought she was having febrile seizures. In the car on the way home, I immediately called my partner and the doctor. Because our doctor was in a consultation, I could not reach her. Once at home, I put my daughter down next to me, but suddenly her entire body began to convulse, and she became unresponsive. I was scared to death and immediately called 911, who examined her, but by that time, my daughter had recovered. The emergency doctor also suspected that she was having a bout of febrile seizures and left again. In the meantime, my partner had returned home as well, when our daughter suffered another seizure. Again, I called 911 and this time, they took us to the hospital.
Febrile seizures, CT and MRI scans
As soon as we arrived at the hospital, the roller coaster ride began: at the first hospital, we were not admitted due to a lack of capacity, but when we were sent to another hospital, the doctors there not being able to control the many and violent attacks that our daughter had. They still thought that she was having febrile seizures. After a CT scan and numerous unsuccessful attempts to suppress the seizures, we were sent back to the other hospital, where they performed an MRI scan to identify the cause and to check if our daughter had suffered any damage. Even before they did the MRI scan, our daughter had another very violent seizure, during which we seriously thought that she wouldn’t make it. That’s why the doctors decided to keep our daughter in the ICU. There she stayed for 8 days and eventually, after many seizures, tests with medication for epilepsy and a 24h long-term EEG scan, the seizures subsided.
Diagnosis: epilepsy
The doctors and the neurologist told us that they suspected our daughter was suffering from epilepsy. This was quite a shock for us. We had to do a DNA test right away, and soon we were informed that my partner appeared to have a genetic abnormality, which he had passed on to our daughter. Then the whole rigmarole started, and we were referred to the Kempenheage clinic (specialist facility for epilepsy). Together we decided that I would stay at home to take care of our daughter. It was a tough decision, but also the right one. Fortunately, I get a lot of support from our families, friends and my partner. But the best thing is that our daughter, now 18 months old, hasn’t had any more seizures and that her current medication is effective. For the time being, we are still unsure about which gene our daughter has. A skin biopsy was sent to Australia, where the sample will be examined in more detail to determine what type of gene is involved. This may take about 2 years, so we still have to live with this uncertainty for a while. Today we will also get the results back from the Kempenheage clinic (psychological, logopedic, physiological tests and a 24-hour EEG scan.)
My life as a mother with a daughter with epilepsy
At the moment I am not working, and I am with our daughter every day; this is nice, but it’s also very tough at times, because I am still afraid that our daughter will have another attack while I am alone with her. If we get satisfactory results today and the specialists tell us that it is safe to take our daughter back to the daycare center, then I would like to go back to work for 2 days a week. It is quite a nerve-racking situation, but somehow, I know that it is better for both of us, and I have to trust our specialists.
"As soon as we arrived at the hospital, the roller coaster ride began."
How does it affect our daily life?
I always have to remember, whenever we leave our daughter somewhere, to make sure her emergency medication is at hand. Whenever we are invited to a birthday, we always have to take her regular medication with us and make sure that it is always ordered on time. When she gets sick and runs a fever, there is the constant worry that this could trigger another seizure. In other words, we are always extra careful around her and we can’t leave her with simply anyone to look after her. The people who look after her must have the confidence to deal with this situation, and we have to be confident that they will know what to do if our daughter has a seizure. This sickness involves a lot of uncertainties, but as long as nothing happens, we are prepared to face the future with confidence.
Whatever the future holds and what type of epilepsy she has is still uncertain. But for now, we are very happy that she is doing so well and that everything is all right for now.
