My daughters Epilepsy
Discussion
I am really struggling to deal with my daughters epilepsy.
It has been very stable for many years but around three years ago she started suffering bouts of pneumonia.
They identified that her Vitamin D level was very low and pointed at one of her Epi meds.
They then reduced that particular medication which took away the stability.
Last year was dreadful, in and out of hospital including two periods in Intensive Care (status epilepticus).
She is in a program of corrective medication action and is having an ECG Video Telemetry period in two weeks time.
Our hopes are pinned on that turning things around.
But I can't stand it now.
I could feel hypertension coming on yesterday, in the middle of a supermarket.
I wake up hearing her head hitting the ground. I constantly have to stop myself daydreaming of her head hitting the ground.
She's had three seizures this week, Monday (head), Tuesday (head, multiple seizures, dislocated shoulder, 999) and yesterday (multiple seizures, cut head, dislocated shoulder, 999).
She cut her head again yesterday.
Two weeks ago I found her in seizure with a huge pool of blood expanding across the floor from under her head.
It was like a murder scene.
We joke about bubble wrapping her. hahaha
It has been very stable for many years but around three years ago she started suffering bouts of pneumonia.
They identified that her Vitamin D level was very low and pointed at one of her Epi meds.
They then reduced that particular medication which took away the stability.
Last year was dreadful, in and out of hospital including two periods in Intensive Care (status epilepticus).
She is in a program of corrective medication action and is having an ECG Video Telemetry period in two weeks time.
Our hopes are pinned on that turning things around.
But I can't stand it now.
I could feel hypertension coming on yesterday, in the middle of a supermarket.
I wake up hearing her head hitting the ground. I constantly have to stop myself daydreaming of her head hitting the ground.
She's had three seizures this week, Monday (head), Tuesday (head, multiple seizures, dislocated shoulder, 999) and yesterday (multiple seizures, cut head, dislocated shoulder, 999).
She cut her head again yesterday.
Two weeks ago I found her in seizure with a huge pool of blood expanding across the floor from under her head.
It was like a murder scene.
We joke about bubble wrapping her. hahaha
I know its not what she would like but severley eppilectics do usually wear a sort of crash helmet.
Until you get it under control it might be worth looking at.
Unflatering hat hair is better than bleeding out.
Hope you get it sorted out eventually.
Heres the type of crash helmet.
https://www.medicalsupplies.co.uk/HP%252FP%252F58....
Until you get it under control it might be worth looking at.
Unflatering hat hair is better than bleeding out.
Hope you get it sorted out eventually.
Heres the type of crash helmet.
https://www.medicalsupplies.co.uk/HP%252FP%252F58....
OP, I feel for you. My daughter has a chronic condition which has led to her being admitted to hospital from A&E on a few occasions. I dread receiving a call from her at a strange hour as my mind immediately goes to thinking she is in hospital again.
I think it is all part of being a caring parent, this doesn’t make it any easier to deal with but it does mean you are not wrong in the way you feel.
My daughter is now 21 years old and a beautiful, intelligent, caring adult with her own life, but I still worry about her. You are not alone in how you feel.
I think it is all part of being a caring parent, this doesn’t make it any easier to deal with but it does mean you are not wrong in the way you feel.
My daughter is now 21 years old and a beautiful, intelligent, caring adult with her own life, but I still worry about her. You are not alone in how you feel.
Sorry slow in coming back.
Many thanks for your responses, they are much appreciated.
My daughter started with epilepsy at 16 years old, she is now 36.
It smashed her self esteem to pieces, and with that, coupled with the particular epilepsy medication (Epilem) they put her on, it very quickly led to self harming and suicidal actions.
Somehow she survived to reach her 21st birthday.
The Neurologist retired and the new guy immediately changed my, now psychotic, daughters medication.
She immediately started to recover and all looked good as she fought to climb out of the depths.
Then, rape.
She plummeted down the darkest hole and spent the next five years trying to come to terms with it, while trying to continue to climb.
By around 26/27 years old she had reached a point of strong stability, had a job, a car etc.
Three years ago the stability was lost and, we are where we are today.
Easter Sunday was bad.
She had a seizure in the afternoon, where she landed with the lower half of her body on the upper part of a step, and her torso on the lower part of the step. I thought she had broken her back.
Fortunately only badly bruised and another dislocated shoulder.
So she's hobbling around in a great deal of pain again but still she is laughing and joking.
She is remarkable.
I'm very proud of her.
We've discussed the helmet protection and she's not keen, but its still on the table.
7 day EEG video telemetry starts on Monday 8th April and we are hoping for the best.
She wants her own place but for now she's safer at home with us.
Again, thanks.
Many thanks for your responses, they are much appreciated.
My daughter started with epilepsy at 16 years old, she is now 36.
It smashed her self esteem to pieces, and with that, coupled with the particular epilepsy medication (Epilem) they put her on, it very quickly led to self harming and suicidal actions.
Somehow she survived to reach her 21st birthday.
The Neurologist retired and the new guy immediately changed my, now psychotic, daughters medication.
She immediately started to recover and all looked good as she fought to climb out of the depths.
Then, rape.
She plummeted down the darkest hole and spent the next five years trying to come to terms with it, while trying to continue to climb.
By around 26/27 years old she had reached a point of strong stability, had a job, a car etc.
Three years ago the stability was lost and, we are where we are today.
Easter Sunday was bad.
She had a seizure in the afternoon, where she landed with the lower half of her body on the upper part of a step, and her torso on the lower part of the step. I thought she had broken her back.
Fortunately only badly bruised and another dislocated shoulder.
So she's hobbling around in a great deal of pain again but still she is laughing and joking.
She is remarkable.
I'm very proud of her.
We've discussed the helmet protection and she's not keen, but its still on the table.
7 day EEG video telemetry starts on Monday 8th April and we are hoping for the best.
She wants her own place but for now she's safer at home with us.
Again, thanks.
Edited by so called on Wednesday 3rd April 10:39
so called said:
Sorry slow in coming back.
Many thanks for your responses, they are appreciated.
My daughter started with epilepsy at 16 years old.
It smashed her self esteem to pieces, and with that, coupled with the particular epilepsy medication they put her on, it very quickly led to self harming and suicidal actions.
Somehow she survived to reach her 21st birthday.
The Neurologist retired and the new guy immediately changed my, now psychotic, daughters medication.
She immediately started to recover and all looked good as she fought to climb out of the depths.
Then, rape.
She plummeted down the darkest hole and spent the next five years trying to deal it while trying to continue to climb.
By around 26/27 years old she had reached a point of strong stability, had a job, a car etc.
Gosh, shocking. So sorry. Does it just appear as a condition or did she suffer injury that brought it on? I know nothing about epilepsy, but interested if there are signs.Many thanks for your responses, they are appreciated.
My daughter started with epilepsy at 16 years old.
It smashed her self esteem to pieces, and with that, coupled with the particular epilepsy medication they put her on, it very quickly led to self harming and suicidal actions.
Somehow she survived to reach her 21st birthday.
The Neurologist retired and the new guy immediately changed my, now psychotic, daughters medication.
She immediately started to recover and all looked good as she fought to climb out of the depths.
Then, rape.
She plummeted down the darkest hole and spent the next five years trying to deal it while trying to continue to climb.
By around 26/27 years old she had reached a point of strong stability, had a job, a car etc.
sorry to hear its not going well.
I didnt think the hat idea would go down well.
I got put on Epillum after a lifetime of Carbamazipine in 2020 My epilepsy has settled down since. There may need to be a bit of trial and error after the forth coming tests with different medications. It will be frustrating for all of you but just keep in mind it will all be for the better in the long run.
I didnt think the hat idea would go down well.
I got put on Epillum after a lifetime of Carbamazipine in 2020 My epilepsy has settled down since. There may need to be a bit of trial and error after the forth coming tests with different medications. It will be frustrating for all of you but just keep in mind it will all be for the better in the long run.
Tom8 said:
Gosh, shocking. So sorry. Does it just appear as a condition or did she suffer injury that brought it on? I know nothing about epilepsy, but interested if there are signs.
No injury at all.She started having vacancies but we didn't understand the significance.
Some people know when a seizure is coming but, unfortunately for my daughter, nothing.
Mid sentence and bang, on the floor.
Some peoples seizures are quite mild but, my daughters are hard, rigid muscle spasms.
When I take her shopping, I hover round her like some kind of creep, waiting to catch her, but it's almost impossible.
so called said:
Tom8 said:
Gosh, shocking. So sorry. Does it just appear as a condition or did she suffer injury that brought it on? I know nothing about epilepsy, but interested if there are signs.
No injury at all.She started having vacancies but we didn't understand the significance.
Some people know when a seizure is coming but, unfortunately for my daughter, nothing.
Mid sentence and bang, on the floor.
Some peoples seizures are quite mild but, my daughters are hard, rigid muscle spasms.
When I take her shopping, I hover round her like some kind of creep, waiting to catch her, but it's almost impossible.
sherman said:
sorry to hear its not going well.
I didnt think the hat idea would go down well.
I got put on Epillum after a lifetime of Carbamazipine in 2020 My epilepsy has settled down since. There may need to be a bit of trial and error after the forth coming tests with different medications. It will be frustrating for all of you but just keep in mind it will all be for the better in the long run.
I'm going to speak with her about the 'hat' again today.I didnt think the hat idea would go down well.
I got put on Epillum after a lifetime of Carbamazipine in 2020 My epilepsy has settled down since. There may need to be a bit of trial and error after the forth coming tests with different medications. It will be frustrating for all of you but just keep in mind it will all be for the better in the long run.
When she was on Epilim, her Epilepsy was stable but it has such a negative effect on her mentally she ended up being psychotic.
She was moved to Lamotrigine, and with no mental side effects, enabled her to fight and deal with what had happened.
3 years ago they took the Lamotrigine away and here we are.
Last year she lost her job, car etc.
But, she keeps on fighting.
Edited by so called on Wednesday 3rd April 16:24
Why did they stop the Lamotrigine?
I developed photosensitive epilepsy at 15/16 and (following assessments, etc) was put on Epilim. I was told that I would probably outgrow my epilepsy. No sign of that nearly 40 years later....
I was informed many years later by a colleague who was a Neurologist with a special interest in epilepsy that they would never put a young woman like I was on that medication these days - partly because of the associated birth defect risks in pregnancy and partly because it can cause severe weight gain.
There was talk at one time of trying me without medication, but the doctors and I decided against this. I've had to surrender my driving licence a couple of times in the past - you used to have to go two years without a seizure, not one year as it is now.
I have been much more fortunate than your daughter, in that my epilepsy is much milder than hers and well-controlled. I've not had many seizures, but mine are also the 'full' type. Generally much scarier for those observing than those experiencing I think.
Sorry you're both going through this.
I developed photosensitive epilepsy at 15/16 and (following assessments, etc) was put on Epilim. I was told that I would probably outgrow my epilepsy. No sign of that nearly 40 years later....
I was informed many years later by a colleague who was a Neurologist with a special interest in epilepsy that they would never put a young woman like I was on that medication these days - partly because of the associated birth defect risks in pregnancy and partly because it can cause severe weight gain.
There was talk at one time of trying me without medication, but the doctors and I decided against this. I've had to surrender my driving licence a couple of times in the past - you used to have to go two years without a seizure, not one year as it is now.
I have been much more fortunate than your daughter, in that my epilepsy is much milder than hers and well-controlled. I've not had many seizures, but mine are also the 'full' type. Generally much scarier for those observing than those experiencing I think.
Sorry you're both going through this.
moorx said:
Why did they stop the Lamotrigine?
I developed photosensitive epilepsy at 15/16 and (following assessments, etc) was put on Epilim. I was told that I would probably outgrow my epilepsy. No sign of that nearly 40 years later....
I was informed many years later by a colleague who was a Neurologist with a special interest in epilepsy that they would never put a young woman like I was on that medication these days - partly because of the associated birth defect risks in pregnancy and partly because it can cause severe weight gain.
There was talk at one time of trying me without medication, but the doctors and I decided against this. I've had to surrender my driving licence a couple of times in the past - you used to have to go two years without a seizure, not one year as it is now.
I have been much more fortunate than your daughter, in that my epilepsy is much milder than hers and well-controlled. I've not had many seizures, but mine are also the 'full' type. Generally much scarier for those observing than those experiencing I think.
Sorry you're both going through this.
About 3 years ago she started getting bouts of pneumonia and other infections.I developed photosensitive epilepsy at 15/16 and (following assessments, etc) was put on Epilim. I was told that I would probably outgrow my epilepsy. No sign of that nearly 40 years later....
I was informed many years later by a colleague who was a Neurologist with a special interest in epilepsy that they would never put a young woman like I was on that medication these days - partly because of the associated birth defect risks in pregnancy and partly because it can cause severe weight gain.
There was talk at one time of trying me without medication, but the doctors and I decided against this. I've had to surrender my driving licence a couple of times in the past - you used to have to go two years without a seizure, not one year as it is now.
I have been much more fortunate than your daughter, in that my epilepsy is much milder than hers and well-controlled. I've not had many seizures, but mine are also the 'full' type. Generally much scarier for those observing than those experiencing I think.
Sorry you're both going through this.
Her vitamin D levels were extremely low and laid the blame on Lamotrigine.
Our hopes are that they bring back the lomotrigine and support her immune system separately.
My daughter had her first seizure in late March 2020, also aged 15/16 when she was at my home and I was in the middle of a Teams meeting. The 10 minutes that followed were the most panic-stricken experience I have ever had. Even just recalling the event makes me feel panicky. I had no idea what I was dealing with, if I hadn't had a 999 operator calmly talking me getting her in a safe position and airways clear through then I don't know how I would have handled it. The fact it was in the early stage of the pandemic and all hell was breaking loose around us didn't help, I remember watching the paramedics get all their PPE on whilst my daughter was laid up having barely come round just feeling totally surreal.
Anybody reading this who has never even thought about it and doesn't know anyone with epilepsy, spend 10 minutes reading on seizures and how to respond to them. If I had done that I might have reacted better. You might just encounter somebody in public or it might be someone in your family.
Fortunately my daughter has been relatively stable since being medicated then, she has had some bad seizures when they were first dosing her and subsequently when they tried to reduce her dose after 3 years, but only when at her mums who has also learned how to respond to it.
It hasn't happened for a while now but its always in the back of your mind, what if she has a seizure in her room and I don't even realise. She always wears noise cancelling headphones so the amount of times I've ran up to her room when she doesn't respond to me. Anything involving water or potential falls are obviously a big risk. I ask her to let me know when she's showering so I can listen out.
OP I don't know how you deal with what you've described with such constant risks, your daughter is remarkably resilient, but you must be too. I hope there's some way to stabilise her situation.
Anybody reading this who has never even thought about it and doesn't know anyone with epilepsy, spend 10 minutes reading on seizures and how to respond to them. If I had done that I might have reacted better. You might just encounter somebody in public or it might be someone in your family.
Fortunately my daughter has been relatively stable since being medicated then, she has had some bad seizures when they were first dosing her and subsequently when they tried to reduce her dose after 3 years, but only when at her mums who has also learned how to respond to it.
It hasn't happened for a while now but its always in the back of your mind, what if she has a seizure in her room and I don't even realise. She always wears noise cancelling headphones so the amount of times I've ran up to her room when she doesn't respond to me. Anything involving water or potential falls are obviously a big risk. I ask her to let me know when she's showering so I can listen out.
OP I don't know how you deal with what you've described with such constant risks, your daughter is remarkably resilient, but you must be too. I hope there's some way to stabilise her situation.
That sound pretty horrendous to have to live with. Getting the right medication to try and get it under control seems to be pretty vital!
My son started having seizures the day before his 1st birthday. After having 6 or 7 in 24 hours they kept him in a week and put it down to febrile seizures due to an infection.
He had nothing else until he was next ill 6 months later.
Then he had more just after his 2nd birthday, he was showing a temp at first and the usual upper respiratory tract infection that all kids get. Then he had a few more and his temp was stable. So the doc said the the NHS policy was multiple seizure with no temp them it's not febrile it's epilepsy and to go home and just live with it.
Went home and he had 7 or 8 that night. Blood curdling scream each time followed by the seizure. By 7am we said f
k this and went back to hospital. Had another as we got there so just spent the day monitoring him. Then spoke to the epilepsy doc and he said his temp could be spiking in his brain and they were holding off on the epilepsy diagnosis.
That was just over a year ago and he's had high temps twice in the last year so we are now cautiously optimistic that he's grown out of them although we are both on edge with his temp and get calpol/ibuprofen in him pretty quick.
He had a videod EEG at some point which is great fun trying to keep an 18 month old sitting still with probes stuck all over their head.
Obviously, im sorry it doesn't help at all with your thread. I just felt like sharing!
My son started having seizures the day before his 1st birthday. After having 6 or 7 in 24 hours they kept him in a week and put it down to febrile seizures due to an infection.
He had nothing else until he was next ill 6 months later.
Then he had more just after his 2nd birthday, he was showing a temp at first and the usual upper respiratory tract infection that all kids get. Then he had a few more and his temp was stable. So the doc said the the NHS policy was multiple seizure with no temp them it's not febrile it's epilepsy and to go home and just live with it.
Went home and he had 7 or 8 that night. Blood curdling scream each time followed by the seizure. By 7am we said f
k this and went back to hospital. Had another as we got there so just spent the day monitoring him. Then spoke to the epilepsy doc and he said his temp could be spiking in his brain and they were holding off on the epilepsy diagnosis.That was just over a year ago and he's had high temps twice in the last year so we are now cautiously optimistic that he's grown out of them although we are both on edge with his temp and get calpol/ibuprofen in him pretty quick.
He had a videod EEG at some point which is great fun trying to keep an 18 month old sitting still with probes stuck all over their head.
Obviously, im sorry it doesn't help at all with your thread. I just felt like sharing!
I've found that I'm dealing with the seizure side of my daughters epilepsy is getting easier and I'm much calmer.
Still hate when she drops to the floor/ground.
Its almost impossible to catch her and then if she's in another room and hear her, it's what damage I'm going to find.
I'm very grateful for all of your responses and comments and sharing experiences.
I've discovered how many wonderful people there are out there.
She has had many seizure when out shopping etc.
There have always been many wonderful people who have not hesitated to come straight over and helped me.
Down an isle of a supermarket or in a wet rainy car park where umbrellas suddenly appear.
It is so up lifting.
My daughter is now in fro the EEG Video Telemetry.
Hope, hope, hope it turns things around.
Still hate when she drops to the floor/ground.
Its almost impossible to catch her and then if she's in another room and hear her, it's what damage I'm going to find.
I'm very grateful for all of your responses and comments and sharing experiences.
I've discovered how many wonderful people there are out there.
She has had many seizure when out shopping etc.
There have always been many wonderful people who have not hesitated to come straight over and helped me.
Down an isle of a supermarket or in a wet rainy car park where umbrellas suddenly appear.
It is so up lifting.
My daughter is now in fro the EEG Video Telemetry.
Hope, hope, hope it turns things around.
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