Infantile Spasms/West Syndrome

For a little while, it looked as the Gaviscon was doing the tricks. The fits seemed to calm down, but after a while they started again, now increasing both in strength and duration. From having a seizure now and again during a week, gradually Vegard was having fits every day. From being single seizures, the fits grew harder and harder. In the end we counted up to 100 crouched in one seizure.

The doctors still thought Vegard was just suffering from reflux. He got a special type of milk formula, that should thicken the milk in his tummy. When this did not help, Vegard was put on Losec, a medicine that takes away the sourness of the stomach acid, so that the pain of having the reflux should go away. Still, nothing seemed to help our little boy.

Vegard grew, the seizures came and went, and as he grew older, we started waiting for things like eye contact, smile, babbles, waiving of arms and legs etc. But no… No smiles, no babbles, no trying to reach for toys or grabbing his toes. Sometimes, but not often, Vegard would look us in the eyes. Our boy turned out to be a very passive baby.

I started to express my concern – there had to be something else wrong, in addition to the reflux – babies should not behave like this! Our local nurse told me to relax, babies develop differently, and I should not compare Vegard with his older brother.
Still, I just knew something was wrong with my boy.

Time passed, and Vegard was still quite passive. He grew more and more ill. By the end of the Easter holiday, he was constantly having fits, and after a very heavy night – the night of March 30th – we acted. We called the children’s ward at the hospital on the Wednesday morning and asked to come in with Vegard.

We were met by a pediatrician whom examined Vegard. He listened to us when we told him about how little contact Vegard gave, and admitted Vegard to hospital for further examinations.
On the Thursday morning they took an ultra sound of Vegards brain, and the third EEG in our baby’s short life. We thought it was a bit weird that they should take another EEG as, they had taken two before, when Vegard was three weeks old. These had been just fine, and showed no signs of epilepsy.

The EEG was done… Two hours later, there was a train of doctors and specialists coming to us, asking us to sit down. They told us Vegard had Infantile Spasms, also called Salaam cramps and West’s Syndrome, a rare, but severe form of epilepsy. The EEG showed severe hypsarythmia, a chaotic pattern in the brain activity.

This illness will often result in a delay in the mental development of the children, something we had clearly seen in Vegard. The doctors couldn’t give us any prognoses on how delayed he would be, as he was just 3 months old, but still, they were open on the fact that it was not a good sign that he still was like a newborn baby.

Vegard was put on Sabrilex, a standard medicine for epilepsy on the very Thursday. He started on the lowest dose and should gradually increase the dose till they found what was right for him. We desperately hoped this was the right medicine.
After five days it seemed like we had a new child. The seizures got better, they were still there, but they were not so hard and exhausting for Vegard. When he was awake, he gave eye contact, he even smiled and babbled a little bit. We took this as a good sign. Maybe I was naïve, but I was clutching at the straws I could find.

All this time, the staff at the children’s ward at the hospital in Drammen were incredible. They gave us an enormous amount of care and support. There was room for both laughing and crying. We were seen both as parents and individuals, and they took great care that Ørnulf and I could spend time together by ourselves. They also put a lot of effort in helping us so that we could be as much with Erik as we could, so that he would suffer as little as possible with all that was going on.

On the 4th of April I wrote in an e-mail to family and friends:

Our life has taken a sudden turn…
We dreamed about a life in an A4 format – a nice family car, a nice flat in a semi detached house, going to Copenhagen for holidays, taking the kids to Tivoli…
We don’t know anymore how there will be regarding Tivoli, but we still have the family car and we still have our semi detached house.

Our aim is hereby: we will stand together as a family -
heaven and earth will be moved to make sure that little Vegard will grow up and feel loved – because of whom he is.
We will strive to give him a good life, and the ability to feel the joy of life.
We will strive to give his big brother a good life too -
to see him as an individual as well, with his own needs, joys and sorrows,
so that not all in his life will be abouth his ill little brother.