Posted on 11/02/2019

How an epilepsy diagnosis changed our family life forever

How an epilepsy diagnosis changed our family life forever

Epilepsy affects 1 in every 220 children – we spoke to mum Sarah about her daughter Elsie’s experience of epilepsy.

Elsie Fielding is a happy 6-year old from a large family in Leicestershire. She has three sisters - Katie (17), Leoni (14), and Lily (12) and 3 brothers - Aidan (8), Eddie (4) and Dexter (3). Her mum, Sarah, told us the harrowing story of Elsie’s epilepsy diagnosis at just 18 months old, explaining the ins and outs of Elsie’s condition, and relaying the fears she had during the early days of Elsie’s diagnosis, as well as her fierce pride for her little girl.

The first seizure

In November 2013, Elsie was an average, healthy and happy toddler who loved to play and was learning new things every day, until suddenly she developed an unusual illness that baffled doctors.

“Elsie developed a large satsuma sized lump in the neck that developed in just a few hours! She had to go immediately to hospital. The doctors found that she had two masses in her neck which had to be removed but they had no idea what had caused them. She stayed in hospital for 6 weeks whilst they investigated, but all we were able to establish was that for some reason, she does not develop a temperature when she has a virus – which all mums will know is a tell-tale sign of a toddler being ill. She remained under the care of a paediatrician.”

A few weeks later, Sarah and her husband Dan (Elsie’s dad) had just about recovered from the stress of Elsie’s unexplained illness and an extended hospital stay, when Elsie experienced her first seizure – something that Sarah and the rest of the family will never forget.

“Elsie had been well and happy as I put her to bed as normal one evening. I heard her coughing quite badly and went into her room to find she had been sick. Elsie was quite out of it which I put down to tiredness and feeling unwell. Her dad took her to the bathroom to clean her up and when he bought her back in, he said she was ‘spitting’. I put her back in bed and was obliviously wiping her mouth and telling her to stop spitting; not realising at the time that she was actually ‘frothing’ at the mouth. Ten minutes later, her hands started clenching and it dawned on me that this was a seizure. Elsie’s legs began jerking and then her whole body went into spasm. We immediately rang for an ambulance. Elsie lost bladder control and was shaking uncontrollably. I honestly thought she was going to die.”

Elsie was experiencing her first tonic clonic seizure, sometimes called a grand mal seizure, where the entire brain is affected, resulting in physical symptoms that affect all bodily functions. ‘Frothing’ at the mouth sometimes occurs because the person’s mouth and jaw are so tight, that saliva blows through clenched teeth. Tonic clonic seizures that last more than 3 minutes are considered a medical emergency – any longer than this and it is possible that the patient will experience damage within the brain. Worryingly, Elsie’s seizure lasted for an hour.

“Elsie’s first seizure had everyone quite worried as it didn’t fit “the textbook”. We were rushed in to Leicester Royal Infirmary. The paramedics had administered rectal diazepam, a special medication that helps stop or slow down seizures, but it wasn’t working. I could hear the paramedics telling the resus team on standby that things were not good – I just kept thinking ‘she is going to die’. As we were rushed through, all I could see was my tiny princess looking totally out of control of her body.

"Finally, after many injections, Elsie’s seizure stopped and she slept for a long, agonising time, with an oxygen mask. The doctors told us that if Elsie woke up, there was a high risk of her having brain damage. It was so much to take on board and all we could do was wait. The hospital staff and paramedics were amazing and did their best to keep me calm. The following few days saw Elsie wake up and to our absolute relief, she did not appear to have any lasting effects from her violent seizure. She was treated with a broad-spectrum antibiotic and given a lumbar puncture to find out what was happening. The doctors could find no reason for the seizure and we were discharged to go for a check-up with the GP a few weeks later.”

Epilepsy diagnosis

Despite being told by the family GP that lots of children have unexplained, one-off seizures, Sarah felt understandably anxious that something may happen again, and her anxiety was justified when the nightmare happened all over again about 6 weeks later.

“Elsie had fallen asleep on the sofa, then she began frothing at the mouth again and her little fist started clenching. It lasted no more than 3 minutes and as I’d been told by the GP that nothing needed to be done until they lasted 5 minutes or more, I just let her sleep. 10 minutes later, the seizure started again in the same manner as the first time, eventually intensifying into a full tonic clonic seizure, so I rang an ambulance.”

Elsie was again rushed to hospital and given Midazolam, which stopped her seizure. She was kept in for observation and given an EEG to measure her brain activity. After several days of tests, she was finally diagnosed with Multi Focal Epilepsy and started taking daily medication. Exhausted, emotionally depleted, and with little knowledge of what epilepsy would mean for her daughter, Sarah felt shocked and feared the worst, until vital support services kicked in to action to help Elsie and the family.

“I was so upset and worried – I was convinced this meant Elsie would not be able to have a normal life. Realistically, I was just totally uneducated about the condition. We were assigned an epilepsy nurse who trained me in basic first aid and also how to administer Elsie’s Buccolam rescue medication when her seizures go over 5 minutes. These nurses were so reassuring and friendly and Elsie has a fantastic relationship with them and her consultant. The hospital has been truly fantastic and once we had the diagnosis, we were given lots of information, support and full advice of what to look for and how to manage Elsie’s epilepsy. Elsie has regular check-ups and a neurologist keeps an eye on things. We have the epilepsy nurses’ telephone number which we can ring should we ever have any concerns or questions. It’s all been very supportive.”

Coming from such a large and loving family, Elsie has lots of siblings and family members around her, all of whom had to understand about her condition and what to do should she have a seizure.

“I was quite open and honest with her siblings, explaining that Elsie has epilepsy and that it meant her brain wiring sometimes got a bit crazy and if it fizzed too hard, she would have a funny turn. As Aidan and Leoni had both witnessed Elsie’s previous seizures, they were already aware of the signs. Aidan is Elsie’s big brother so he can be quite protective. Their jobs if a seizure happens are to give Elsie space and distract the smaller children. Aidan and Leoni both know to look out for the ambulance and show them in if I am otherwise engaged with Elsie. They have always been incredibly brave.”

Naturally, extended family members were also worried about Elsie’s condition and it took time for them to be able to understand and deal with it.

“I think most people in our inner circle found it quite scary to start with but after getting more information from the NHS, we are all comfortable now. Elsie stays at her grandma and auntie’s houses and they know how to administer her medication… it’s just normal to all of us.”

Living with epilepsy

Elsie continued to experience ill health over the next 5 months of her life. She suffered kidney failure, which doctors thought may have been caused by the emergency medication she was given after her first seizure, then rectal prolapse. The hospital explored whether or not Elsie may have an underlying condition like cystic fibrosis, so she had other tests but nothing was ever discovered.

As Elsie’s health stabilised, life eventually started to get back to normal, albeit a new kind of normal, but Sarah’s anxiety about Elsie’s epilepsy was always below the surface.

“For the first few months after diagnosis I slept on the floor at her bedside – I was so worried she would have a seizure and I wouldn’t know about it, or she would die in her sleep. However, simple solutions helped to give me peace of mind and a better nights’ rest. For example, I received an anti-suffocation pillow from the charity Epilepsy Sucks, and implemented a CCTV system in her room so we could keep an eye on her. Epilepsy Sucks UK (ESUK) is a fantastic charity that provides online support and advice and tirelessly raises funds to provide these pillows for tired-out parents and children.”

Sarah told us that Elsie was prescribed a medication called Keppra and has taken this since she was 2 years old. She also explained to us that Elsie has experienced different seizure types over the years, which is common for many people with the condition. She has had ‘cluster seizures’, where they come one after the other but for shorter durations and now when seizures occur, they are often ‘absence seizures’ where she can zone out for a minute or two.

“After any seizure Elsie can be quite confused and extremely tired, we tend to cuddle and let her sleep it off and then she wakes up none the wiser.”

Elsie has regular check-ups at hospital but Sarah is ultimately responsible for managing Elsie’s epilepsy, ensuring she is healthy and that her medication is working as it should.

“I spoke to Elsie’s consultant earlier this year about my concerns regarding her extreme tiredness at times and bedwetting, as well as her worsening temper, and we agreed that as her seizures had decreased, we would reduce the Keppra dosage. So far it has gone well and Elsie has suffered no seizures. I am on tenterhooks though just fearing the worse.”

Living a normal life

Despite her worries, Sarah has always tried to ensure that Elsie’s condition is not an obstacle to anything she wants to do.

“I have tried to let her do anything she likes, even trampolining, which I had thought would never be possible. I now feel we have it all under control and Elsie has awareness of it but doesn’t let it stop her from doing anything, although she will pull the ‘watch my Epilepsy’ card if her brothers are being rough!”

Elsie is growing up to be a happy, fun-loving girl who loves sport and being active.

“Elsie is a vibrant, determined child full of giggles and cheekiness – she is very determined too. She is loving and always playing ‘mother hen’. Her laugh is an infection cackle, like the comedian Sid James! Elsie has just discovered a love of football and now plays in goal for Coalville Ravenettes. She is fearless and strong on the pitch and giggles as she tackles the other players who are often a good foot taller than her.”

Having epilepsy has not stopped Elsie doing what other 6 year olds do, like going to school and making friends.

“Teachers at Elsie’s school received training from the NHS and there are now several teachers able to administer her emergency medication. Her friends don’t pay any attention to it and we don’t make it a big deal. Some of the parents show pity towards her sometimes, but she doesn’t get left out of anything – she gets lots of party and play date initiations, and I just keep my phone close-by when she’s not with me in case of an emergency.”

However, Sarah has some concerns that Elsie is starting to find it challenging to learn new things, which may or may not be related to her epilepsy.

“School has always been something Elsie has enjoyed up until this year where she is a little behind in her learning. Elsie tries her hardest at everything she does but is finding it hard to stay focussed at times in lessons and isn’t hitting the targets set. She has become quite upset by this and isn’t happy to go to school right now. Year 2 is the first year that they have “proper lessons”, sitting at desks and raising of hands rather than the reassurance and close proximity of a teacher sitting with her. I think she is struggling to adjust. Since diagnosis, the school has worked hard to support Elsie and are now keeping a close eye on her stress levels within class and also signs of any learning difficulties.”

We asked Sarah what advice she would give to other parents who have a young child diagnosed with epilepsy.

“I would say to get as much information from professionals and relevant charities as possible. It gives you the empowerment and understanding which I think makes you calmer and able to deal with it all. Also, honesty – the more the people who interact regularly with your child know, the more reassured you will feel that they will know what to do if a seizure occurs.”

Sarah is a really positive person despite all the difficulties that Elsie has faced. She’s confident Elsie will not let her epilepsy affect her life, and that they can conquer any future problems together.

“Elsie’s epilepsy is controlled currently and I feel very positive about her future – I can’t see it affecting anything she wants to do. Obviously, things may change as her hormones develop but I’m aware of that and know that medication has worked so this may just need tweaking at times. Elsie can live a full happy life just like any other little girl.”

Sarah is extremely proud of Elsie and the way she has handled her epilepsy.

“From day one of this journey, Elsie has taken it all in her stride with a smile on her face and has never moaned about taking medication – she even treats blood tests as an opportunity to chat with the nurses! Her bravery with tests and hospital appointments has been amazing, its just like a day out to her. I’m proud that Elsie has never let it stop her doing anything she enjoys, even if that does mean I have to stand watching her have footballs blasted towards her head as she stands in goal!”

Finally, Elsie, now aged 6, told us a little bit about what it feels like to have epilepsy.

“I get worried sometimes if I bang my head but I can play with my friends and I play football, I’m the goalie. My medicine tastes horrible but when I go to the hospital, I have lots of fun with the nurses and get to play and paint pictures. I watch my blood test because they have a swirly straw coming out of my arm so I can see the red stuff – it’s cool. I don’t mind having my epilepsy.”

Thank you to Sarah and Elsie for telling us their inspirational story about young epilepsy, and showing us that living with epilepsy may be challenging, but does not mean a child cannot live a full, healthy and happy life.

If you or your child have epilepsy and you need advice, support or information, there are a range of charities and support services that may be able to help you.

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