January warrior – Rachel’s story – three years on

Our daughter Rachel is now 3 ½ years old, and on January 3rd 2021 it will be 3 years to the day since, as a 6 month old, we noticed her starting to do very odd head movements. The 3rd January 2018 was the first day the schools were back, but our 5 year old had been vomiting overnight, so we’d kept him off school. My husband had gone off to work that morning, and I was bracing myself to do the juggle of being home alone with a sick boy, and (as we were soon to realise) an extremely sick little girl. On New Years Day that year, we’d noticed Rachel throwing her head forward a couple of times through the day, but put it down to a 6 month old having poor head control. On 2nd January I noticed it again and decided to Google “head movements 6 month old”. One of the search results I stumbled on was a video from a group called The UK Infantile Spasms Trust, and I’m convinced the advice provided in that video, to “capture images of spasms on your phone if possible, and present them to a paediatric doctor” is one of the key reasons why we are where we are today with our healthy, sassy, chatty (and very bossy!) little girl.
My husband came home from work at lunchtime after my increasing worry over seeing some fairly dramatic ‘head bobs’ through the morning. I showed him the UKIST video and he somewhat dismissed it, given IS seemed such an awful, and rare, outcome for such small and unobtrusive head movements which did not seem to bother Rachel at all. However the advice was to go to hospital, and I figured we could go and be back by mid afternoon, after no doubt being told it was nothing to worry about.
We went to Children’s A&E at the Royal Hospital for Children (RHC) in Glasgow, and after taking one look at the videos I was able to show, within the hour Rachel was having an EEG, and by 6pm we were back home, having done a terrifying Google search of IS, with a bag full of Vigabatrin and Prednisolone, lengthy instructions on how to administer and what may happen next, a whole bunch of helpline numbers, scheduled home visits from nurses and pamphlets on IS.
We were told that Rachel would the first baby in Glasgow to be given the new protocol of both Vigabatrin and Prednisolone simultaneously, deemed to have more positive outcomes, but within 12hrs, Rachel’s little personality had completely disappeared, replaced by an irritable, constantly hungry, constantly crying child. Confused and desperate we called the on call OOH neurologist (whom we later learned was new in post), who stunned us by saying this new behaviour was unfortunately probably just ‘the disease taking hold’. Bluntly, our lives seemed suddenly in pieces.

The next few months were a rollercoaster of Rachel ballooning in weight, grunting for milk every few hours around the clock, incapable of getting any meaningful sleep, with constant odd, jerky head and body movements. But through all this, most importantly, the spasms had been halted completely in early January, within 24 hours of her treatment starting. Throughout these months, and especially during the time Rachel was weaning off her meds, the ever present support, encouragement, reassurance and empathy shown by members of the Infantile Spasms Trust support group is something we won’t ever forget. To say they were a lifeline is an understatement. Rachel was seen as an outpatient at the brilliant Fraser of Allander Neuroscience Unit at RHC in Glasgow for a further 12 months and was discharged in April 2019.

As we approach the 3year anniversary of her diagnosis, thankfully the spasms have not recurred, and Rachel continues to develop normally. We know we have been very fortunate in getting a rapid diagnosis and successful treatment, though we take nothing for granted. The treatment for IS was incredibly tough on Rachel, and also for us as a family. Thankfully it’s something she’ll never remember… and we’ll never forget. Wishing courage and strength to all our little warriors who’ve fought, and continue to fight, IS. And sincere thanks to all at UKIST, who helped our family so much during such a difficult time.