Could I expect any change for my disabled daughter? A mother describes the process.
My 5-year-old daughter Nura
suffered brain damage at birth.
In October 2007 my husband read an article about the sleeping tablet, Stilnox, which somehow has the opposite effect on people with brain injuries. Instead of behaving like a sedative it appears to target dormant or dead brain cells and ‘wakes up’ people with brain damage.
The Stilnox drug trial consists of some truly miraculous stories – the most amazing being the original patient Louis who woke up after 3 years in a permanent vegetative state and spoke to his mom.
We made contact with Dr Wally Nel, the physician who initially witnessed the miracle of Stilnox, at Pretoria Academic Hospital (PAH).
The earliest appointment we could get was June 2008. In the meantime we forwarded Nura’s medical history
The question we asked ourselves was whether this was worth doing and what exactly we were hoping to achieve.
Was this what we expected? Did we think the Stilnox would somehow wake Nura’s brain and she would suddenly be a typical little girl? No, not really, but we decided we would like to try the drug and see if it would make any change – even the slightest. And there would really be no harm in trying – the only side effect might be that she would be a bit sleepy.
Starting the trial
On the 11 June 2008 we started the process. The procedure involved first doing a base scan before administering the Stilnox and then to repeat the scan once she had been on the drug for a week.
Nura was first injected with a saline solution to clear the path for the isotope that would show up on the SPECT (Single Photon Emission Computed Tomography) scan and literally make her brain glow in the dark.
They had difficulty finding a vein so the cry she let out when they inserted the needle was so painful that I started crying. Then she had to be sedated so she would be still on the scanning table. She doesn’t do well with liquid medicines as she has a heightened gag reflex. We tried giving it to her in a syringe, but she made herself sick. We managed to get her to drink some from her bottle. But of course she gagged and not enough went in.
The isotope that was injected only has a 2-hour life span so we had to get the scan done. Three people had to hold her down for the scan as she is very strong – especially when restrained. The technician held Nura’s head down and straight while her dad held her arms and upper body and I held her legs still.
She wriggled and shouted and laughed and tried to turn to follow any sound and the scan didn’t work. Our 2-hour window was slipping away. So quickly another plan and another scan. This time they bandaged her head to the table while the nurse held her head and again her dad and I held the rest of her still. The second attempt was a success.
The crying started again when they took the drip out and of course it was so heart sore you could feel her pain. The minute we left the nuclear medicine department my little brain injured girl stopped crying. She was so tired she just fell asleep in the car.
The next day we met Dr Nel to discuss the scan and to administer the Stilnox for the first time. We gave her a third of the tablet with her lunch and she was observed for two hours. They had to see if she displayed any side effects and what, if anything would happen. She got flustered and gave the sigh they wait for as a sign that the drug is in the system. Dr Nel thought she was more alert and responded faster to sound than before, but we were not so sure. Watching for change
We spent the next week watching Nura closely for any signs of change. All we saw was that the Stilnox made her incredibly sleepy and she resisted the drug with all she had in her. Somehow she knew it was a false sense of sleepiness.
Then we were back at PAH and repeated the procedure in order to do the SPECT scan. You could clearly see an increased oxygen and blood flow to certain parts of the brain in the second scan, but still no visible dramatic change in her behaviour or functioning.
In June this year – a year after starting the Stilnox treatment - we made the trip to Pretoria again and did the SPECT scan at Chris Hani Academic Hospital (formerly known as PAH). There appears to be increased activity in the right temporal lobe and more oxygen flow to the brain than before.
We have seen no miracles – in the conventional sense, but Nura is definitely louder, more demanding and very temperamental. She has a will of her own and has us wrapped around her little finger – so perhaps the Stilnox has worked a miracle!
Want to know more? Read 'Waking the brain'
.Do drug trials offer real hope?