Talking About It
OK, So I’ve never talked about this before on here but now I’ve decided I want to share this with you all. It’s nothing massively personal or private, just something that affects our life in a way. As you can see the picture that is going with this post is of me and Harley. So, yes this is all about Harley, my little bundle of energy. When Harley was 8 months old he was diagnosed with epilepsy and so of course we’ve had to adjust our lives a little to cope with living with his condition. Let me talk you through it all.
Harley was born in November and so by the time it was warm again, he was about six months old. The June of 2017 was extremely hot and one night I was woken by the sound of banging on the side of Harley’s cot. Of course I leapt out of bed and went to check on him. To my horror his little body was thrashing about in his cot. Having done an infant first aid course I knew not to touch him but I was panicking. I woke Sean and he rang my parents to come and watch the kids so we could take Harley to the hospital. Once his little body stopped thrashing about I lifted him out of this cot and checked his airways. Thankfully they were clear. I let him latch on for a feed while Sean got dressed. My parents arrived quite quickly and we rushed off to the hospital.
At the hospital we were quickly seen. The paediatric doctor said Harley had a fever and the seizure was a result of a spike in his temperature and was what is known as a febrile seizure, something that occurs in infants between six months and 3 years. They gave him fluids and kept him overnight and discharged him the following afternoon.
Several days he had a second seizure, this time we called 111, the NHS non emergency helpline and we were advised to keep him hydrated and keep an eye on him. After a few days he was back to his normal self, rolling about the floor, trying to crawl, and his temperature was back to normal. Several weeks later he was playing with his toys when his body when stiff and he started to convulse. Once again we called 111 were advised to keep an eye on him. But about a week later he had another seizure, which lasted almost 10 minutes. Concerned I called Sean at work and agreed to meet him at the hospital. On the way I dropped the older children off with my mum.
At the hospital we were seen by a paediatrician who decided to refer us to a specialist. We were asked a lot of questions and after a long discussion she decided to book him in for a blood test, MRI and electroencephalogram (EEG). Several days later he underwent the test and week later we were back to discuss the results. She explained that the results showed Harley did indeed have epilepsy, and diagnosed him with Generalised seizures. She explained that tests showed no cause, so we don’t know what the cause for his epilepsy is. Initially she didn’t prescribe any medications gave us lots of information and leaflets. Over the next few months he had several more seizures. After another checkup and discussion of his behaviours she prescribed a medicine regime to keep his epilepsy under control.
We had to try several different medications before we finally find the correct one. He had an allergic reaction to the first two and the third didn’t work at all. He is currently on clonazepam, which is currently effective. Since being on medication he has had several more seizures, but the specialist said as they happen so rarely the medication is working. As he’s gotten older we’ve learned his triggers. Bright flashing lights and loud noises, like loud bangs are included in those triggers. Not all of his seizures have been tonic-clonic, his last two seizures were absence seizures, during which a sufferer appears disconnected from those around them and stares in space.
Despite having epilepsy, he is developing as well as could be expected for his age and his very bright. He speaks so well, and he never stops talking! He loves learning new things and exploring. Of course there are things that we have to be careful when doing, like being around water, climbing and riding a bike. But we’re positive we won’t let his epilepsy hold him back at all.
Love,