Testing - failing - and more testing

It was obviously not supposed to be easy. Sabrilex turned out not to work as we hoped, and Vegard was soon taken off that medication. Instead, the doctors now gave him Orfiril for the epilepsy. In addition to this, he was given shots of Synachten – ACHT. ACHT is a drug that can be very efficient for fighting hypsartytmia, but it completely knocks the children out. For weeks, Vegard was just laying there, not able to move, making no sounds – he was like a doll.

Children on ACHT must be followed closely, as there is a risk of getting too high blood pressure. Because of this, Vegard had his blood pressure taken every second day. After a few weeks on ACHT it was once again time for this control. The nurse who checked the pressure this day wondered a bit…. “Hm… I think I must have done something wrong, I’ll do it again.” Once again she measured Vegard’s blood preasure. “Hm… I think there must be something wrong with the machine. I’ll go and fetch another one.” A new machine was fetched, and Vegard’s blood pressure was taken once more. And then the nurce went to get the doctor. The blood pressure was high – way to high. If Vegard had been a grown man, the pressure would be too high.

And then we had to stop giving Vegard the ACHT shots. It was quite fascinating observing the changes in Vegard as the ACHT left his body. We were told it could take up to a fortnight before we could see if there had been any use in these shots. Vegard had his last shot of ACHT a Thursday morning. The morning after I thought for a moment that I hade eye contact with Vegard, but I thought that I might have imagined it. Still, later that day, as Ørnulf changed Vegard’s nappy, Ørnulf could happily tell me that Vegard had moved his right leg. Somewhat later that day, and the following day, Vegard started moving his arms.

On the Saturday, Ørnulf said it looked like Vegard was trying to smile, and I could confirme the same thing later that day. Even later, Saturday evening, Vegard smiled at a very happy and touched grandmother. “Look – he’s smiling at me!”

And there was progress. EEG showed no hypsarythmia. Vi had a baby that sat on our knees, interacting with us. Vegard moved his arms and legs further more for each day passing. Soon he gave us real eye contact, he started making sounds – and one glorious day he laughed. Vegard gave us a happy, glorious laughter!

It was too good to be true. It didn’t last long – it lasted for five days… The hyparythmia returned. But for five days we did have a little boy who laughed at us – who laughed at the world.

Vegard is lauging - 4 monts old - May 2005

So – the ACHT had to be stopped, but the doctors still wanted to continue cortisone treatment, since it had worked so well for the hypsarythmia. They started him on Prednisolon in addition to the Orfiril. And with the cortisone, there was growth of facial hair, Vegard got to get a big “moon face” – with blown up cheeks, and he also developed eating problems.


Vegard with cortisone cheeks - June 2005


Vegard on his Name's Day - September 2005

While trying out a range of different medicines for epilepsy, there was taken an endless row of test in hope of finding out why Vegard is like he is – what lies behind the infantile spasms? There was a spinal puncture, a MR scan of his brain, a biopsy of his muscles, and countless blood samples taken. Every answer that came back showed no abnormalities, everything looked just fine. Even the MR scan was perfectly fine, which confused the doctors profoundly. Until then, they had been quite sure that Vegard had to have a big brain damage, but no, not even a small scar to explain the heavy epileptic activity.

There was also a frantic period of trying out different medications in different combinations. So far nothing had seemed to work. The Prednisolon got replaced with Rivotril, and this seemed to work quite well. But – one of the side effects of Rivotril is an increase of slime produced in the lungs. This was not a good thing for Vegard, who already had problems with this.

By the end of August 2005, Vegard was once again admitted to hospital. This time his breathing was very bad. He breathed faintly if he was laid on his left side, but if he was laid on his back or put upright, he stopped breathing. The doctors did not yet understand why this happened, and Vegard got more and more ill. In September, Vegard’s main doctor – dr Thomas, sat down with us, and we had the conversation about ventilators and resuscitation, if it came to us having to make such a choice…

We started preparing for the worst, and gave notice to family and friends that it didn’t look too good. Then one evening Vegard’s neurologist came by, I think he more or less stopped to pass time and have a talk. I told him then, that honestly, I thought this all started when Vegard was put on Rivotril. The doctor looked at me for a short moment, then he disappeared very quickly down the corridor. Later that evening, Rivotril had completely gone from Vegard’s medication.

From there on, Vegard slowly got better, and after two weeks he sat on my knee, as well as Vegard could ever be. Dr Thomas used to come to our room just to look at Vegard and rejoice. He openly admitted that he never thought this possible.