Im a 77 year old mother whose just lost my darling son aged 48. He died two days ago from a seizure which he didn’t regain consciousness from. I was dashing to get to him when the phone rang. Paramedics had worked for an hour to try and revive him.
I’m just numb and raw with shock. I miss him dreadfully andmy life is so much emptier now.
I’m having trouble sleeping as I cant relax. I’ve tried listening to music, reading but nothing helps. I’ve even taken 2 Nytol pills but they have no effect.
I am so sorry, life is so cruel. I am 73,my husband is 76. My son had moderate learning disability, right side cerebral palsy and epilepsy. He died in July 2023 aged 47 from cancer. It was a shock as he had no symptoms until April he started to complain of pains in hip and spine . In hospital they said secondary bone cancer , they could not find primary. He died within 3 Months , just before he died they said they found a small 20 mm ulcer in the lesser curve of stomach.
I can only say you had 48 wonderful years of your son . People with special needs are wonderful people , hard work , but can feel you with so much joy . Hold on to that thought and all the love you gave him.
One important thing you can do,is go on to LeDeR web site and report his death . This is so they can have a record of how many people have died with a learning disability or Autism. It just take a few minutes ,but the information gives them a insight into how many deaths there are of these wonderful people.
Thank you so much for your response. My son’s health did deteriorate in the last year. He had scoliosis, Osteoarthritis of the hip, and a hernia (operated on). He also had Covid twice in 2024 despite being vaccinated.
I think he coped heroically given all this.
My only consolation from his loss is that he didn’t suffer anymore.
Once again thank you for your help and I will get in touch with the organisation you mentioned.
I know they suffer so much, but they always seem to smile and love life . If it is any comfort,I don’t know what to think about the after life , but when my husband and I were holding my sons hand,he said I have to go now. I said where he said death they have come for me. Take care and look after yourself:pray:
Both our sons were heroes given their health problems.
It must have been a big shock to discover that your son had advanced cancer. It must have been a great comfort to him, and you, that you were both with him at the end.
I missed my son’s end and we still don’t have a cause of death and won’t have for another two months. We have an interim death certificate saying it’s an indeterminate death.
The trouble with seizures if they go on to long the brain does not get oxygen Did he suffer with epilepsy or was it a one of? I do wonder if my son cancer was caused by the medication he was on for years. But the other way I look at it for 25years he was free of the seizures and able to go out by himself. I hope they find an answer for you soon,or maybe like I we are always Wondering.
The hospital did not tell us he was bad on the day he died. He use to phone me up in the morning, being cheeky saying get out of bed you sleepy heads. He did not phone me that morning,so I phoned him.I heard bloody hell as he dropped the phone, then he said my arm has been hurting me all night. I said we are coming to the hospital as I sort of knew the pain could be his heart. We got there about 10.00 am , he died ten to two in the afternoon. The visiting were 2pm to8pm,we normally got there at 3 pm, I just had a bad feeling.We miss him so much, he was so cheeky but in a loveable way.
He did suffer from epilepsy on top of everything else. However his seizures were well controlled by his medication. He had 1-2 a year. He grew to know the signs and would always be seated prior to it to avoid getting hurt. However there were no warning signs for others possibly a deterioration in his behaviour. Of course he couldn’t tell us.
The carers said that the seizure lasted for 2.45 minutes. The danger period is over 3 mins.
I don’t know how accurate that time is though.
So am waiting for the outcome of the autopsy to try to find out why. I may never know.
I have to be grateful for the time we had.
My son had sign was a few days before he would say I have so much energy. But he never had a fit for eight years. The neurologist said he could not be taken off medication when I asked , because they said they could see in the brain where it was coming from and he he needed to be on it for life?
Your son was on a good medication if he went 8 years without a seizure. The Neurologist we saw was reluctant to change Danny’s regime. I asked for more modern medication. He’d been on the same one for 20 years and the side effect if this was anaemia. I wondered whether he could have one less damaging. The Neurologist was not keen to change it as the current one was so effective and we didn’t know whether a new one would be more damaging. He could not guarantee if new meds would be as effective either so in the end we carried on.
It was good that he did not have seizures, but I do wonder if the medication he was on for so could have caused the cancer in his stomach . The thing is they do not follow up things like regular endoscopy , I know one of the meds he was on has a yellow card on it, I only found out after he died . I contacted the yellow card website.
He did every 3 months ,because he had an under active thyroid as well.The last one showed his liver function was high, a repeat one was booked and it was on the day he was taken into hospital. The liver function also goes mad when there is something wrong with the bones . When he was admitted they could not find any cancer in liver,lungs,etc. They could not find primary anywhere, they called it secondary bone cancer with cup ( cancer with unknown primary) . It was not until a week before he died they said they found a small 20mm ulcer on the lesser curve of the stomach. It was not blocking any bile ducts , that is why no symptoms.
That’s so sad for your son and you. I found my son’s multiple heallth problems overwhelming and a bit depressing because I felt there was little I could do to help him.
Thanks I think that it will. It’s the not knowing that makes it worse. They’ve taken samples from his organs and some fluid. Anyway thanks for chatting with me. It’s been helpful to find someone in a similar situation.
Best wishes
I know it’s the not knowing, I do wonder about the long term use of the medications also I am still not sure about the covid vaccines. My son had three of them , he also had covid , and being with Mencap he stayed in his room for three weeks.It is all so unfair,bless them both.
