STARS Patient Information

Evie's Story

Evie is a very happy two-and-a-half-year-old, full of character and determination. She is the youngest of three and great fun to be around.

I clearly remember Evie’s first seizure. My husband Jeff and I had just run the Cambridge Half Marathon with my sisters. Evie was six months old and at the end of a tiring day, she had lost her balance sitting on the floor and hit her head. She let out the most distinctive cry and I knew instantly that something was very wrong. She was stiff, her limbs were arched outwards and rigid. Her eyes rolled into the top of her head, and she was deathly white. She wasn’t breathing, and I couldn’t feel her heart beat.

We needed help and with two older children aged five and three to consider, I flew across the road with Evie to a neighbour’s house while my husband dialled 999. As I reached our friends, Evie appeared to come to a little, but she was semi-conscious and a frightening grey colour. Jeff arrived with the girls at the same time as the paramedics. Evie was groggy and not really with it as we took her into hospital. The paramedics were fantastic in helping reassure Tilly and Florence who didn’t want to see their baby sister taken away. We were discharged with a diagnosis of breath holding. It didn’t really seem fitting with what had happened before. I had experienced breath holding with one of Evie’s sisters when she was younger, and I knew that what we had experienced was something quite different but at that stage did not know about, let alone understand RAS.

In the weeks and months that followed, Evie had a cluster of seizures. More often than not they were initiated by blows to the back of the head. Not happy with what was happening and what I already knew as a mum, I pushed for a referral from the GP. We saw a paediatrician who again diagnosed breath holding.

Four months after her first seizure there were seven of us around the tea table including two of Evie’s older cousins. It was a happy tea time with lots of banter and jokes. All of a sudden, a big roar of laughter took Evie by complete surprise and triggered another attack. This was the worst to date. Again, she appeared to stop breathing and for a moment I couldn’t feel a heart-beat. She was taking longer to recover so off we went to A & E.

We were seen by an experienced A&E doctor, who actively listened to everything I had to say without question. After months of suppressed anxiety, I was overcome. This doctor knew about RAS. It transpired that Evie had an underlying infection which had made that seizure worse and harder to recover from. However, with a family history of cardiomyopathy (for which I am tested regularly) we pushed for an ECG to rule out any underlying heart condition and an EEG to help eliminate epilepsy.

Months went by without an episode. I returned to work and Evie started at nursery. Then five months later, Evie had another RAS attack when she bumped her head. We handled this episode on our own at home with no hospital trips which was an important milestone. I took a week’s unpaid leave and did more research and came across STARS.

STARS was fantastic in giving me the confidence that everything we were doing was right. The level of knowledge and understanding was second to none. Many worries were addressed by the RAS booklet. We learned of the correlations with night terrors, sensitive hearing, pains in the legs as well as familial tendencies. This immediately contextualised the interrupted nights with Evie’s inconsolable nightmares and the pins and needles that her older sister suffers also.

I used the STARS resources (Jack has RAS) to explain to Tilly and Florence who appeared to comprehend. This was confirmed a week later when Evie experienced an episode before her sisters’ swimming lesson – triggered by the change of atmosphere from the extreme February cold to a heated humid poolside. They remained calm, gave their sister a gentle kiss then hopped into the water for their lesson – reassured they were not to blame. I was so proud of their response that day and it is thanks to STARS.

Evie continues to grow and develop with all the usual parenting challenges and delights. We grow with her and learn all the time how to effectively manage her and her RAS. Evie undoubtedly has a particularly sensitive head and I make no apologies for her birds-nest hair; it is the one thing I let go. (hair brushing can trigger an RAS attack in children or adults with a particular sensitivity).

We are fortunate that Evie has not experienced RAS attacks with as high a frequency as some children, but they are still extremely upsetting. She is happy, adventurous and care free so the biggest day to day impact is for my husband and me! Parenting Evie requires an extra level of vigilance and mental resilience which is tiring and at times, overwhelming. Leaving her in the care of others is not quite as care-free an activity as it should be and naturally, our time off has suffered as a result. This is something that we will rebalance as we continue to learn and grow with her.

Emily, Cambridgeshire.

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