Curtis

First Presentation

It was the 7th February 2017, an evening I will never forget. Curtis was 4 and a half months old. We had a lovely day together. I had met up with one of my NCT friends and we had taken our boys for a lovely long walk in their buggy’s. Curtis went to sleep fine that evening and as we went to bed at 11pm I noticed on the baby monitor Curtis looked like he was moving about. I alerted Carl and he said to me don’t worry he is probably just dreaming and to go back to sleep. But something didn’t feel right to me and, despite really not wanting to wake him, I crept into his room to check he was ok. To my terror I could hear a funny choking noise. I turned the light on and he was white as a sheet, his wide eyes locked open, lips blue and foaming at the mouth. I screamed to Carl to come in and call an ambulance. Curtis’ body was all stiff and shuddering, I said to Carl “he’s choking, he’s choking, he cannot breath, what is he choking on?!” None of us had ever witnessed a seizure before and of course we then learnt this was what was happening, and the seizure was affecting his breathing. 

The ambulance soon arrived. Curtis had a temperature and they said it was a febrile convulsion and it would stop shortly. But it just didn’t. They scooped him up into the ambulance and gave him oxygen – I can remember being so scared my whole vision went white. I thought all those times I complained about the newborn stage and him not sleeping, was he actually going to die? It was pure panic and terror and I felt helpless. We arrived in resus and he was still seizing, they put numerous medications into him and as some of his veins collapsed they had to drill into his little legs, 45 long minutes he finally stopped. His body then came out in a huge rash and we were in hospital for 3 nights. We were finally discharged with the diagnosis of a complex febrile convulsion due to a viral infection, thinking this was just a one off horrendous ordeal. Little did we know more was to come. In hindsight we did lose him that night, and he lost the life he should have had.

Gaining a diagnosis

After the first seizure, Curtis went on to have another one during our first family holiday with friends at Center Parcs. He was in the swimming pool and I suddenly noticed him shaking. I said to Carl he is cold, get him out but we soon realised it was happening again. We ran screaming through the changing rooms with his little body shaking asking someone to help us. It again went on for over 30 mins and we stayed overnight at Bedford Hospital cutting the holiday short and leaving the next day heartbroken. It then clicked that something was very wrong with our beautiful big eyed boy, but what? 

The follow up clinic from his first seizure was just to confirm he was developing normally and at that time he was and to basically see how things progressed. Then in June, when I was away at a friend’s wedding, Carl thought he noticed Curtis having jerks. He would be playing and then suddenly he would lose concentration and his body would just jerk like he had an electric shock. I notified the team who were looking after him and we were admitted to our local hospital where he had an EEG and I had to log how many times they were happening. We lost count and he was started on medication which we hoped would stop the seizures but it didn’t. He was just 9 months old. 

Then two weeks later, on the hottest day of the year, the epilepsy nurse had been round to see me in the morning to talk about rescue medication in case he had another big seizure and how to use it, issuing me a prescription to collect. That afternoon I couldn’t keep him cool, I think inside the house it was 28 degrees and the jerks kept coming more frequently. Then he just went into a seizure with one sided arms and legs (hemi clonic typical for Dravet), and it didn’t stop. Carl rushed to the hospital from work and after he was gone for an hour they decided to intubate him and put him in an induced coma. We sat in the relatives room while they did it feeling helpless and praying for our son and all he had to endure. Thankfully he came round bright and bashful but then once on the ward we were informed we had to be transferred to London. We didn’t know at the time but Dr Elaine Hughes had been aware of Curtis’ history and suspected Dravet Syndrome, with this last seizure putting the puzzle into place. We were blue lighted to London in case he seized on the way, Carl following behind in the car. I had never felt so alone and scared since his first seizure. What had happened to our beautiful baby boy? He was deteriorating and changing daily, what was life going to hold for him? We stayed at Evelina for two weeks and they introduced another medication and sent Curtis’ blood along with ours for genetic testing. Dravet spectrum was mentioned but nothing concrete confirmed until the tests came back. We googled Dravet Syndrome and it looked horrific – we were devastated. It was then 8 long weeks of waiting until one evening we had a call from Dr Hughes… Curtis has Dravet Syndrome and neither me or Carl were carriers. He was, as it was put, just very, very unlucky.

Challenges

Curtis has challenges in all aspects of his life and they impact him daily. He has had a feeding tube since he was 2 years old as he has an unsafe swallow which they think could be an effect from one of his early seizures. He has development delay and attends a special needs school, his mobility is wobbly and he cannot walk long distances. He has to have a wheelchair whenever we go out and he is still incontinent. Up until he was 4 years old he was a very unsettled sleeper. He would be up multiple times a night and sometimes would take me two hours to get him back to sleep. Every time we used to change or increase medications it would always affect his sleep pattern. He would have seizures any time of the day but he would have them at night in his sleep or early hours of the morning especially if he had some sort of illness, we have mattress monitors and also baby monitors on him all night, but it meant for me I sleep very lightly and check on him frequently and most times when he has a seizure I hear it before the monitors alert me its as if I have a sixth sense about him. With Dravet Syndrome there is the increased risk of SUDEP, we try not to think about it too much, as there could be one day we find him and he hasn’t woken up.

He was very photosensitive for many years, I remember leaving Tesco’s once as he was seizing as I was walking down the aisle with the fluorescent tubing lights I was so scared, we didn’t know at that time that he was photosensitive just going outside in the garden when the sun was shining would start him seizing so I would just bring him back indoors we spent most of our time indoors. Now he always wears his hat and sunglasses before we go outside and that helps so much. At home we had venetian blinds and the sun coming through them would trigger seizures so we had to change where he would sit in our dining room as he would sit and stare and trigger seizures from them, we would try anything to stop him having so many seizures. I think in the early years that was the biggest impact and made us so isolated indoors not wanting to go anywhere with him, even out in the car going past road works and the orange flashing lights would trigger him as well as the sunshine through trees. I used to drive him around to get him out of the house and times when we saw even a police car go past with its lights flashing I hoped he hadn’t seen it. 

Family Life

Dravet Syndrome has had a huge impact on our entire family, it’s affected everything we do. We have adapted our lives to fit Curtis and his needs always come first. Everyday Curtis has to have medication morning and night, it is very challenging to leave the house with him. We have to take his rescue medication, oxygen and his wheelchair. If he has a seizure we have to have an ambulance straight away so we never tend to travel far from home. It means we couldn’t leave Curtis with anyone including Grandparents due to the complex nature of his seizures and rescue medication. The first few years were so traumatic, full of hospital stays and we were unable to make the journey back with him and then came Covid and lockdown. It made us feel isolated and distanced from family and friends, we were never able to just meet up with friends and see them as we didn’t have anyone we could trust Curtis with and we were afraid of him having seizures if we took him places. He suffers in hot weather so most summers we would spend indoors in one room with a small air con unit we had bought and he would only go outside in the evenings once it wasn’t as warm. 

One of our friends a couple of years ago managed to get charitable funding through their work and we had air conditioning fitted into his bedroom, our lounge and kitchen. It has been amazing, meaning we can keep him safe at night during the summer months and that when we are indoors we know it isn’t too hot and we are not confined to one room. It’s a perfect example of how we make our world fit to him. It definitely has impacted my mental health, when Curtis is having a rough time with seizures my anxiety always increases as a mum you are always going to worry about your child but this is so much more a heightened state. It does not matter how many times he has a seizure you never get used to witnessing them, your heart races and you hope he stops and more importantly when he comes round, he is the same beautiful loving, happy little boy that he was before. He requires 24 hour care, we can’t leave him unattended as you never know when he could have a seizure and a lot of the time they catch you off guard and it means we can never fully relax and not worry about him.

Support from DSUK

As soon as Curtis was diagnosed, I became a member of the private facebook group and it was wonderful to meet so many people that knew exactly what you had been through and there is so much advice and a wonderful community to be part of. I am very close to one of the Mums as our children were diagnosed at similar times, and I would be lost without her now, we vent, we chat, we cry and we get each other through this journey. DSUK also gifted us the mattress monitor we use at night we had alerted us numerous times when he has been seizing in his sleep and a SAT’s monitor that we use to monitor his oxygen and heartrate which is particularly useful when he is unwell.

I have also attended the Dravet conferences, which is a wonderful opportunity to meet all the professionals and hear about future medications and to meet other parents.

Curtis is a beautiful little soul. He has the most beautiful dark brown eyes and a sense of wisdom in them much older than his years along with innocence despite all he has gone through. He has the kindest heart and he is a very thoughtful little boy. For someone that goes through so much he is so placid and happy which makes it so much harder for us in the days we watch him suffering and even on the hard days he always manages to say or do something that makes us smile.

He is very social and loves being with his family, playing with his Grandparents Nanny and Grandad ‘Pop’, Nanna and Grandad ‘Boo’, and his little brother Grayson who arrived almost 2 years ago. He is very gentle with him and they already share a loving bond.

He loves lawnmowers, he has a bubble one, a normal one but best of all daddy’s one that he loves to push up and down the garden with him and when we take him to the local Garden Centre he  pushes them ‘checks the oil’ ‘fills them with petrol’ and ‘changes the filter’. He is a very tidy little boy (gets it from his dad) and loves helping to put the washing up away and he has a collection of toy hoovers, the main favourites  are Henry and Hetti closely followed by the Dyson he can watch videos of them on YouTube for hours. He loves Blippi and Ryan’s World on Youtube.

He loves doing Playdoh, helping make cakes with Mummy and when the weather is perfect for him he just loves being outside in the garden ‘doing digging’ helping Daddy. He’s always loved Mr Tumble and he does a lot of the Makaton signing. We are having our first holiday with him this year (since Center Parcs) at Butlins to see Mr Tumble on his birthday. He has also recently taken up horse riding. He absolutely loves it. He first went with his school and now he has private lessons once a month. He smiles the whole time and it seems to calm him and his seizures. It’s what its all about: making wonderful memories with him. Making sure everyday he is happy and living his best life and when he has bad days we make sure the good days make up for it.