I’m not sure if I’m posting in the correct place but I could really do with some support from others possibly going through similar and can offer some guidance and helpful advice or a hand hold because I’m barely holding it together.
My son is 16 (17 in a few weeks).
At the start of December he had his first seizure in the morning whilst in the shower, despite the awful gut wrenching panic I felt I told myself I knew what to do and could get through it (I work at a centre for people with epilepsy so I’ve witnessed quite a few seizures and receive annual training on it and life support) but when his lips began to turn blue and I realised I couldn’t move him (he was in an awkward position) and if he stopped breathing I wouldn't be able to do CPR I called for an ambulance. I had never been so scared in my life and thought it would never be possible to be even more scared.
Around 2 weeks later he had another seizure, again in the shower, only this time he had gone over the side of the bath, taken the shower curtain with him, hit his head on the radiator and was lodged behind the door (tiny bathroom) so I couldn’t get in to him, again lips started to go blue, ambulance called, they also sent fire brigade as they thought the door may need to come off to get to him.
In mid Jan (about 6 weeks later) he had his neurology appointment, no further seizures at that point but he was diagnosed with epilepsy and started on Keppra 250mg twice a day due to be doubled after 2 weeks. Around a 5-6 days into the meds he became very tired and lethargic, sleeping a lot, not really eating saying he's not hungry or he’s too tired to eat when normally he's like a walking dustbin. He had another seizure shortly after waking up in the night, we managed to ride it out. After that he continued to sleep a lot, not eat much and had to I had to tell his work (part time job of 1 hour a couple of nights a week) that he needed time off as he feels lousy, he kept saying he felt weak which I wasn’t sure if that was down to not eating much. I put the rest down to the meds and frantically tried to reach his neurologist as I was worried upping the dose would leave him comatose. The Dr agreed it sounded like he wasn’t tolerating the meds so stopped the Keppra and changed him to 25mg of Lamotrigine once a day, to be increased every 2 weeks by 25mg until we reach 150mg a day.
At this point we had kind of concluded that his seizures seemed to be linked to waking up ways occurring within 5-15 minutes of waking up.
On Saturday morning I heard him get up and go to the loo and then get back in bed. I was lay there for probably 30-60 minutes contemplating needing to get up and pee but not wanting to because I was cozy and didn’t want to wake the dog up when I heard him seizing, I ran into his room and he was mostly still in bed but kicking the wall, again we rode it out. Once he started to come to properly and he was able to start chatting a little bit he said that he had gone back to bed after the loo and back to sleep, he had no recollection of being awake again prior to the seizure starting which makes the timing different to previous seizures (in his sleep), then, as he always seems to do at this point, he declared he was starving now and asked if I’d get him a drink and a bowl of cereal, which I did. His room was a tip and there was a load of rubbish on his floor so as he was eating I decided to grab a rubbish bag and have a quick tidy up, as I did he suddenly began having another seizure, I grabbed and moved the bowl planning again to ride it out but I was panicking about choking because he was in the middle of eating and I didn’t know if he had food in his mouth. I managed to get him relatively onto his side and some food was coming out when all of a sudden he just went grey, he wasn’t breathing properly, I was even more scared than the first time which I didn’t think possible, well and I panicked and called an ambulance.
Much to his disgust he’s been admitted. He is fuming because “I’m fine, they’re not doing anything and I just want to go home, this is your fault, stop calling the bloody ambulance”. We’ve been waiting on a neurology review for two days.
Meanwhile I used the time he's in hospital to clean his room and discovered that despite them literally being placed in his hand with a glass of juice he has taken less than half of his prescribed anti- seizure meds!!! This now raises why he’s seemed so out of it as it couldn’t realistically have been the meds given how few he had taken. Obviously I’ve told the Drs what I have found.
I’m so angry, stressed and terrified all at the same time. I’ve been permanently on edge ever since this started, every little noise I jump up in a panic. When I’m at work I’m worried something bad will happen whilst I’m not there or that he’ll take unnessisary risks. I’m not sleeping well. I spend every bit of downtime I get crying. The fact he does not seem to take it seriously or realise the impact it and his blasé attitude is having on me does not help. There is only me & him at home so I’ve no one to lean on or help share the burden. Seriously how do people cope because I’m really struggling.
He was due to start driving lessons next month, he got a Christmas job to save up for them and thats been put an end to. He is also doing an electrical course and now hes got to have his work and his work experience modified and risk assessments in place. He had his eye on an apprenticeship with scottish power in September but theres a good chance that won’t be allowed to do that now either for safety purposes which I understand but it just feels like all the things he was looking forwards to and his potential career have just been ripped away in a heart beat and I worry where we go from here once his course ends in a few months.