Firstly I am not a medical professional. Just a Mum telling our story so far.
W had two febrile seizures when he was around 18 months old. He had tonsillitis at the time and we were told it was a normal reaction for a child who has a high fever.
Fast forward to this year. W has now had 2 convulsive, tonic clonic seizures and numerous absence/unexplained episodes.
I remember being in the Neurology waiting room. I honestly believed (even after 1 convulsive) they were going to send us home and say ‘come back in 6 months’ but they didn’t. They diagnosed Epilepsy. I cried.
I couldn’t believe it. I still thought they’d made a mistake. I remember speaking to the Epilepsy nurse and considering not putting W on medication. I found the possible side effects of Sodium Valproate daunting. Surely he didn’t need it? Nothing had actually ‘proved’ Epilepsy.
After this we visited hospitals for numerous tests. MRI’s, EEG’s, ECG’s, bloods. Then another convulsive seizure hit 2 days before Christmas. Yet again we were in hospital. It really hit me then. He was Epileptic and this was the start of a new chapter of our lives.
We started his medication on Christmas Eve and so far so good (apart from the tiredness and over eating) he’s only had a cluster of absences.
We are due to attend another EEG next week – but this time sleep deprived. I am anxious but I’ve now developed a little survival kit and grab bag for hospital visits. If you are just starting this journey, like me, it might be helpful (if you’re an experienced pro it would be awesome if you could add any helpful tips in the comment section)
- Food (a lot of food, snacks, drinks)
- Pj’s and comfortable clothes, as you never know how long you’re going to be there. Dress in layers as it’s so hot in some wards.
- Magazines/small toys and DVDs
- Wet wipes or similar
- Phone chargers (depending on length of stay or procedure).
- Change for the car park
Wish us luck for next week. I will update you on how it goes,