DD also has an epileptic encephalopathy - she’s gone from being like a normal 16 year old, to being like an 18 month old, with practically no short term memory. She’s likely only to understand only the last word in any sentence and forget that within 30 seconds. She’s lost most of her vocabulary and often we can’t work out what she is trying to say. She might say “I want some circles!” She means biscuits.
She too could go into status, suffer brain damage and die within a few hours, or suffer Sudden Death in Epilepsy - although it’s most likely on her own in the night. She has a video, audio and mattress monitor all night, plus staff awake all night, and 1:1 care all her waking hours in the care home where she lives, but she comes home 30% of the time.
Worst of all in many ways, are the drop attacks - a type of seizure where all the muscles relax without warning, and she falls down unconscious. These can cause head/neck/back injuries, broken teeth, fractures and soft tissue injuries. She’s had at least 20 skull x rays, 2 CT head scans, countless times concussion, numerous dental x rays and multiple x rays of most bones.
June, she had a drop attack in a supermarket. She knocked me over - knocking me out, dislocating and breaking 2 fingers. She was lying unconscious on the floor. Bystanders called 2 ambulances. Virtually every chain store/supermarket has called 999 to her. If she walks close to fridges, she falls down head first onto the shop’s tiled floor, as cold is a major trigger for seizures. Then she could be lying in a pool of blood, screaming her head off. She does wear head protection, but it doesn’t protect the face, teeth or chin. She’s had stitches along her chin three times. At one time, she used to fall onto the eye socket in particular.
We keep a wheelchair in the car, so that if she falls and is either semi conscious or only suffering a non 999 injury, one of us can go back to the car, get the wheelchair and we can wheel her back to the car, and drive to the Minor Injuries Unit. She can strip from the waist down during the seizure - it can very hard to get her back to the car, partially undressed in February on the high street, when she’s fighting me. Aggression can occur before, during and after a seizure. She can push me over, or punch DH in the stomach. Irritability and aggression are symptoms of the syndrome she has. Sometimes we take her round the shops in a wheelchair, just to provide relief from the stress. However she needs weight bearing exercise to strengthen her bones, as the drugs cause osteoporosis young.
On December 23rd, she was putting the Xmas tree up and fell down unconscious. We spent 8 hours waiting for an ambulance and 24 hours in A & E, while they did x rays of her hips; and the neck of femur, knee, ankle and foot down one leg - because she can tell us she is in pain, but not where. It’s guesswork. They found two small, but painful fractures. She’s now on oramorph, and in a wheelchair because walking, even with a boot on, is so painful for her.
Two care agencies said it’s too stressful for one of their care workers to look after her on their own. Where she lives has a team of nurses on duty 24/7, and doctors in the daytime to look after her, if anything happens - although they have to send her to A & E for x rays, etc. We all have post traumatic stress from seeing in particular, the injuries with blood everywhere.