Of epilepsy and stigma....

Introvert

Elder Lister
@Eye Candy this is a very serious thread but ni kama inaenda south, so i'm not sure if to share my experience/story or not.

Anyway, here we go....

My late bro had epilepsy all his life until he passed away in his sleep back in 2009. He was a year older than me so I lived through all that like I was the one with epilepsy. Through out school when he got the attacks, I was called to take care of him and it was never easy.

fast forward to May 2020, my last born son(4 1/2 yrs old) developed a seizure during supper in the middle of covid and curfew. I was in the bedroom so I didn't see it happen, I just heard screams from my wife and other son. I rushed to the dinning area and found him on the floor unresponsive. We thought he had chocked on food so I started first aid for chocking victims but he wasn't responding. It was the longest 5 minutes of my life trying to resuscitate my boy. So I carried him and took him out to see if fresh air could help and also call for help from neighbors. I was so desperate that I even put my fingers in his mouth and throat to get whatever was chocking him out until he vomited( by the way his teeth were clumped shut and it was a struggle trying to put my hand in his mouth.

Anyway, after he vomited, I just knew he was back and so I took him back to the house, He was back but semi conscious, I gave him some water then he fell into this deep sleep for like one and a half hours. when he woke up, he couldn't remember what had happened. So we just thought he chocked and that was it. A few days later, one morning (same month) he was having breakfast with the bro and everything was ok, then I had my elder son screaming that his bother was chocking again, so I rushed to the sitting room to find him convulsing and that's when I saw it and all my memories of my late bro came flashing back. It really crushed me in all ways you can think of. Took him to hospital and did all the tests you can imagine blood, urine and stool, CT scans, EEG, the whole lot of them but nothing came from the tests so his epilepsy has no trigger. He has had 5 more attacks the last one being 30 July so we are celebrating almost 2 months without an attack.

What really kills me is how his life has changed, he can't go out to play with other kids without someone watching him the whole time. I don't know what will happen when schools resume. We were getting used to life without a DM since he joined school, now it seems we will have to get one. The constant medication too is expensive and scary(like handling a nuclear bomb).

It just feels like I'm 6 yrs all over again when my bro 1st got his attack (at night too coincidentally).

*** Visiting the Neurology clinic at Gertrude's has been crazy for me. The kids you see there make you feel that your kid is ok. I was there on the 14th of this month and this young couple came in with their very young daughter who has cerebral palsy and is also blind and that really fcukd up my emotions.

the End.
Thanks for sharing this.
I hope all goes well for your son.
After learning about Photosensitive Epilepsy I made a point of removing all auxiliary spotlights from my bikes that have a flashing mode (where the lights flicker rapidly). Dangerous.

powerful-motorcycle-spotlights.jpg
 

Ngima ya Mûhîa

Elder Lister
@Eye Candy this is a very serious thread but ni kama inaenda south, so i'm not sure if to share my experience/story or not.

Anyway, here we go....

My late bro had epilepsy all his life until he passed away in his sleep back in 2009. He was a year older than me so I lived through all that like I was the one with epilepsy. Through out school when he got the attacks, I was called to take care of him and it was never easy.

fast forward to May 2020, my last born son(4 1/2 yrs old) developed a seizure during supper in the middle of covid and curfew. I was in the bedroom so I didn't see it happen, I just heard screams from my wife and other son. I rushed to the dinning area and found him on the floor unresponsive. We thought he had chocked on food so I started first aid for chocking victims but he wasn't responding. It was the longest 5 minutes of my life trying to resuscitate my boy. So I carried him and took him out to see if fresh air could help and also call for help from neighbors. I was so desperate that I even put my fingers in his mouth and throat to get whatever was chocking him out until he vomited( by the way his teeth were clumped shut and it was a struggle trying to put my hand in his mouth.

Anyway, after he vomited, I just knew he was back and so I took him back to the house, He was back but semi conscious, I gave him some water then he fell into this deep sleep for like one and a half hours. when he woke up, he couldn't remember what had happened. So we just thought he chocked and that was it. A few days later, one morning (same month) he was having breakfast with the bro and everything was ok, then I had my elder son screaming that his bother was chocking again, so I rushed to the sitting room to find him convulsing and that's when I saw it and all my memories of my late bro came flashing back. It really crushed me in all ways you can think of. Took him to hospital and did all the tests you can imagine blood, urine and stool, CT scans, EEG, the whole lot of them but nothing came from the tests so his epilepsy has no trigger. He has had 5 more attacks the last one being 30 July so we are celebrating almost 2 months without an attack.

What really kills me is how his life has changed, he can't go out to play with other kids without someone watching him the whole time. I don't know what will happen when schools resume. We were getting used to life without a DM since he joined school, now it seems we will have to get one. The constant medication too is expensive and scary(like handling a nuclear bomb).

It just feels like I'm 6 yrs all over again when my bro 1st got his attack (at night too coincidentally).

*** Visiting the Neurology clinic at Gertrude's has been crazy for me. The kids you see there make you feel that your kid is ok. I was there on the 14th of this month and this young couple came in with their very young daughter who has cerebral palsy and is also blind and that really fcukd up my emotions.

the End.
Pole Sana brother. May God heal the kid
 

Ramiran

Elder Lister
www.healthline.com › health › mari... Marijuana and Epilepsy - Healthline
@Eye Candy this is a very serious thread but ni kama inaenda south, so i'm not sure if to share my experience/story or not.

Anyway, here we go....

My late bro had epilepsy all his life until he passed away in his sleep back in 2009. He was a year older than me so I lived through all that like I was the one with epilepsy. Through out school when he got the attacks, I was called to take care of him and it was never easy.

fast forward to May 2020, my last born son(4 1/2 yrs old) developed a seizure during supper in the middle of covid and curfew. I was in the bedroom so I didn't see it happen, I just heard screams from my wife and other son. I rushed to the dinning area and found him on the floor unresponsive. We thought he had chocked on food so I started first aid for chocking victims but he wasn't responding. It was the longest 5 minutes of my life trying to resuscitate my boy. So I carried him and took him out to see if fresh air could help and also call for help from neighbors. I was so desperate that I even put my fingers in his mouth and throat to get whatever was chocking him out until he vomited( by the way his teeth were clumped shut and it was a struggle trying to put my hand in his mouth.

Anyway, after he vomited, I just knew he was back and so I took him back to the house, He was back but semi conscious, I gave him some water then he fell into this deep sleep for like one and a half hours. when he woke up, he couldn't remember what had happened. So we just thought he chocked and that was it. A few days later, one morning (same month) he was having breakfast with the bro and everything was ok, then I had my elder son screaming that his bother was chocking again, so I rushed to the sitting room to find him convulsing and that's when I saw it and all my memories of my late bro came flashing back. It really crushed me in all ways you can think of. Took him to hospital and did all the tests you can imagine blood, urine and stool, CT scans, EEG, the whole lot of them but nothing came from the tests so his epilepsy has no trigger. He has had 5 more attacks the last one being 30 July so we are celebrating almost 2 months without an attack.

What really kills me is how his life has changed, he can't go out to play with other kids without someone watching him the whole time. I don't know what will happen when schools resume. We were getting used to life without a DM since he joined school, now it seems we will have to get one. The constant medication too is expensive and scary(like handling a nuclear bomb).

It just feels like I'm 6 yrs all over again when my bro 1st got his attack (at night too coincidentally).

*** Visiting the Neurology clinic at Gertrude's has been crazy for me. The kids you see there make you feel that your kid is ok. I was there on the 14th of this month and this young couple came in with their very young daughter who has cerebral palsy and is also blind and that really fcukd up my emotions.

the End.
Ati kuna bhangi aina fulani hua very low THC na high CBD ambae hu reduce seizures from several a week to kitu kama 0, 1 or 2 a year.

Hua in tablet form

Is CBD good for epilepsy?

Cannabidiol, or CBD, which does not cause psychoactive effects but has shown some positive effects on certain body systems. This is the part that has been effective in reducing seizures in some people with epilepsy.May 31, 2019

www.healthline.com › health › mari... Marijuana and Epilepsy - Healthline
 
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