‘With Àlex, they had to beg to fit a line, but now he deals with it much better’

Àlex, four years old, is scared of needles. Very scared. But the treatment he needs to keep his condition under control must be administered intravenously. Àlex has a rare disease known as opsoclonus myoclonus syndrome, a neurological autoimmune condition that causes ataxia and involuntary eye and body movements. 

‘He started to show symptoms at two and a half years old, and he had a terrible time of it. His hand began to shake so badly that he couldn’t even bring a spoon to his mouth to eat. It was then that we took him to the SJD Barcelona Children's Hospital, and in a couple of days he was diagnosed and started on treatment’, recalls Àlex’s mother Marta.

Every month since then, Àlex has had to come to the hospital for a gammaglobulin IV treatment. ‘It was a real drama up until a few months ago’, remembers the mother. ‘He would cry and cry, and when he saw we were arriving at the hospital, he would bring his arm in so tight that there was no way to loosen it. He would be so tensed up when nurses would try to insert the line and he'd move so much that sometimes they'd have to reinsert it several times. Once they even had to sedate him.’

The situation was so complicated that staff considered fitting a port-a-cath, but ultimately they decided that was not the best option for a once-monthly treatment. That is how Àlex ended up at the hospital’s Pain Unit, where the goal is to control or minimise pain experienced by children being treated at the centre.  

One of the jobs of the team on this unit is to help children with an extreme fear of small procedures such as having a central line or catheter inserted, taking a blood sample, or having a lumbar puncture. In these cases, the nurse will administer nitrous oxide gas, which has an analgesic and anxiolytic effect. It is given a few minutes before and throughout the duration of the procedure. 

‘The change is like night and day. Before, coming to appointments was traumatic for everyone involved. He really had a terrible time of it, as did we. Now when we say it's time to come to the hospital, he’s fine with it. And when it's time to fit the line, he's given some gas just beforehand so the analgesic has time to take effect, and we try to distract him a little bit. When he finally realises, the line is already in. With Àlex , they really had to beg, but now he deals with it well thanks to the pain relief he's given’, explains Marta.