Epilepsy - looking for advice in respect of my Daughter
Mistrust in Management
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Epilepsy - looking for advice in respect of my Daughter
I would be very grateful if a professional in this subject could give me some advice.
My 27 year old Daughter used to suffer 'absences' on a regular basis - attempts were made to manage these through medication but it seems no treatment has been of benefit to my Daughter.
In the last 18 months my Daughter has started to suffer major 'fits', one of which resulted in falling and breaking her collar bone in 4 places with a subsequent unpleasant operation and recovery.
She has held down various jobs and is determined to try and lead as normal a life as is possible. Presently she has managed to secure a fairly good job after many years where employers get somewhat 'tired' of an employee has serious medical problems - believe me a lot of those employers have not behaved in a manner that is morally or legally correct.
Today things took a turn for the worse when she was waiting at a train station to visit us. She felt a fit coming on and so moved towards the seating area at Woking station - the next thing she remembered was being on the rails! - she had fallen on to the track. Fortunately she did not get near the 'live rail' and two men got down and pulled her to safety.
I picked her up and brought her home to rest with her lumps and bruises. I had to leave for work and at the airport my Wife said my Daughter had suffered another major fit but that the paramedics were dealing with it.
As parents we are at our wits end - the medical profession seem to be be able to do nothing that will control this problem. I am now worried that a serious accident will happen. I have suggested many times that my Daughter comes back to live with us but she is determined to try and lead an independent life (you would understand that if you knew me!).
Is there a professional out there who may be able to offer advice?
I should mention, by the way, that my Daughter did have problems that could be percieved as mental health issues (i.e. self harm). Whilst these issues seem to have receded it is possible they may still be there although I believe thay have no bearing on the latest turn of events.
I'm looking for advice. Do you let your Daughter continue to catch trains to and from cental London Daily - or do you persuade her to give up the only decent job she has had. Bearing in mind she is an adult and can do exactly as she pleases - which today apparently was not going to hospital as the paramedics advised.
As a parent I am stumped, and very worried for my Daughters future.
Any help gratefully recieved.
Kind regards
Exeng
My 27 year old Daughter used to suffer 'absences' on a regular basis - attempts were made to manage these through medication but it seems no treatment has been of benefit to my Daughter.
In the last 18 months my Daughter has started to suffer major 'fits', one of which resulted in falling and breaking her collar bone in 4 places with a subsequent unpleasant operation and recovery.
She has held down various jobs and is determined to try and lead as normal a life as is possible. Presently she has managed to secure a fairly good job after many years where employers get somewhat 'tired' of an employee has serious medical problems - believe me a lot of those employers have not behaved in a manner that is morally or legally correct.
Today things took a turn for the worse when she was waiting at a train station to visit us. She felt a fit coming on and so moved towards the seating area at Woking station - the next thing she remembered was being on the rails! - she had fallen on to the track. Fortunately she did not get near the 'live rail' and two men got down and pulled her to safety.
I picked her up and brought her home to rest with her lumps and bruises. I had to leave for work and at the airport my Wife said my Daughter had suffered another major fit but that the paramedics were dealing with it.
As parents we are at our wits end - the medical profession seem to be be able to do nothing that will control this problem. I am now worried that a serious accident will happen. I have suggested many times that my Daughter comes back to live with us but she is determined to try and lead an independent life (you would understand that if you knew me!).
Is there a professional out there who may be able to offer advice?
I should mention, by the way, that my Daughter did have problems that could be percieved as mental health issues (i.e. self harm). Whilst these issues seem to have receded it is possible they may still be there although I believe thay have no bearing on the latest turn of events.
I'm looking for advice. Do you let your Daughter continue to catch trains to and from cental London Daily - or do you persuade her to give up the only decent job she has had. Bearing in mind she is an adult and can do exactly as she pleases - which today apparently was not going to hospital as the paramedics advised.
As a parent I am stumped, and very worried for my Daughters future.
Any help gratefully recieved.
Kind regards
Exeng
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Originally Posted by exeng
if a professional in this subject could give me some advice.
Circumstances sometimes arise when individuals need to be compulsorily treated, even if it's against their will, either for their own good or the good of others. Lay people often refer to this as "sectioning" because many years ago the procedures used were set out in different sections of the Mental Health Acts.
Poorly controlled epilepsy is always a difficult one, especially when functions on many days outwardly seem relatively normal. I presume that this person is not licenced to drive, still less to fly ! Yet the episode of falling onto a live railway track during a fit really does raise the stakes dramatically on the subject of compulsory assessment and / or treatment.
Good luck, whichever way you decide to go !
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You don't say who has been managing your daughter's condition. If it's her GP I think it's time for a referal, if it's a consultant ring his/her secretary and ask for an appointment ASAP.
Hi exeng,
Am not in medicine, but it now appears you and I have two things in common (the other being the A320).
AMEandPPL will realize that your daughter would have seen consultant neurologist(s) at some stage years ago, when she was having those absence seizures, and is presumably on daily medication. Our experience and observation is that, after the rough ride of adolescence and early years of finding feet in employment, the late twenties also may not be plain sailing, even if the sufferer feels reasonably comfortable with the medication she/he is on. [She may not be, particularly if on sodium valporate - for example - and wanting to start a family.] We were caught on the hop a couple of years ago.
With this sudden change in her condition she will obviously be re-consulting. The profession now seems to accept that the vast number of epilepsy sufferers are mainly determined to live as normal a life as possible, and that their families, like you, share that aim and are there to help if and when needed.
Check your PMs and remember, there are hundreds of thousands of other mums and dads, brothers and sisters, not to mention spouses, who share your hopes and concerns.
Chris
Am not in medicine, but it now appears you and I have two things in common (the other being the A320).
AMEandPPL will realize that your daughter would have seen consultant neurologist(s) at some stage years ago, when she was having those absence seizures, and is presumably on daily medication. Our experience and observation is that, after the rough ride of adolescence and early years of finding feet in employment, the late twenties also may not be plain sailing, even if the sufferer feels reasonably comfortable with the medication she/he is on. [She may not be, particularly if on sodium valporate - for example - and wanting to start a family.] We were caught on the hop a couple of years ago.
With this sudden change in her condition she will obviously be re-consulting. The profession now seems to accept that the vast number of epilepsy sufferers are mainly determined to live as normal a life as possible, and that their families, like you, share that aim and are there to help if and when needed.
Check your PMs and remember, there are hundreds of thousands of other mums and dads, brothers and sisters, not to mention spouses, who share your hopes and concerns.
Chris
Last edited by Chris Scott; 28th Apr 2008 at 13:04.
Mistrust in Management
Thread Starter
Thanks for the replies
The idea of 'sectioning' has occurred to us before but we have always resisted that course of action because we are worried that such action may alienate my Daughter. It would be my hope that we could persuade my Daughter to voluntarily undergo such a course of action.
Falling on to a rail track does seem to raise the stakes, but this is the only time such a thing has happened and we obviously hope it won't happen again. Equally she could walk into a busy road and be run over - to prevent this from happening would mean basically locking her up and only going outside under supervision - that would be a terrible life totally dependent on others.
She has been under the care of different specialists as well as her GP over the years. No medication has had a positive effect and the epilepsy has continued to get significantly worse.
I'm going to try to get her referred again for further evaluation.
Regards
Exeng
Falling on to a rail track does seem to raise the stakes, but this is the only time such a thing has happened and we obviously hope it won't happen again. Equally she could walk into a busy road and be run over - to prevent this from happening would mean basically locking her up and only going outside under supervision - that would be a terrible life totally dependent on others.
She has been under the care of different specialists as well as her GP over the years. No medication has had a positive effect and the epilepsy has continued to get significantly worse.
I'm going to try to get her referred again for further evaluation.
Regards
Exeng
Plastic PPRuNer
"Sectioning" would seem to be completely inappropriate and would probably be refused. Hopefully.
She needs a complete re-evaluation by a competent neurologist with an interest in seizures.
See http://www.ion.ucl.ac.uk/divisions/c.../interests.htm
Look under Epilepsy
Good luck
She needs a complete re-evaluation by a competent neurologist with an interest in seizures.
See http://www.ion.ucl.ac.uk/divisions/c.../interests.htm
Look under Epilepsy
Good luck
This seems to be a need to properly control your daughter's epilepsy. Compulsory treatment is not an option as she is not medically incompetant.
Your first port of call should be to sit down with her GP and discuss referral to a neurologist. The aim is to optimise and monitor drug therapy to reduce the number of fits. It may also includse other teests to identify possible causes or triggers.
There really is no reason why the NHS cannot provide this. You may also find the National Epilepsy Cente of valus in providing information and support
www.epilepsynse.org.uk
Most epileptics can be helped. Do not despair
Your first port of call should be to sit down with her GP and discuss referral to a neurologist. The aim is to optimise and monitor drug therapy to reduce the number of fits. It may also includse other teests to identify possible causes or triggers.
There really is no reason why the NHS cannot provide this. You may also find the National Epilepsy Cente of valus in providing information and support
www.epilepsynse.org.uk
Most epileptics can be helped. Do not despair
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Another view
Hi there. I am /was an intensive care paramedic and can shed some light hopefully. I have had numerous patients who have had similar episodes. They had done the full array of tests and could not determine the cause of the seizure activity. Interestingly some epilepsy medication can precipitate seizure activity!
The particular patient of mine was taken to a children's hospital and had an episode in front of medical staff. This presented like epilepsy, with some seizure activity but conscious. She went from being a placid girl to an emotionally distressed one all within the space of minutes. Before now, the activity was never witnessed by medical staff.
Concurrently this girl had numerous anxiety disorders, which turned out to be the cause. Her anxiety issues and suppressed 'trauma' led to them manifesting themselves physically. Treatment is anti-depressants/cognitive behavioural therapy and counselling to find the root cause of her issue/s. Requires lots of patience on your behalf because its hard work.
So it reality it could be behavioural rather than physiological in origin.
Hope this helps
The particular patient of mine was taken to a children's hospital and had an episode in front of medical staff. This presented like epilepsy, with some seizure activity but conscious. She went from being a placid girl to an emotionally distressed one all within the space of minutes. Before now, the activity was never witnessed by medical staff.
Concurrently this girl had numerous anxiety disorders, which turned out to be the cause. Her anxiety issues and suppressed 'trauma' led to them manifesting themselves physically. Treatment is anti-depressants/cognitive behavioural therapy and counselling to find the root cause of her issue/s. Requires lots of patience on your behalf because its hard work.
So it reality it could be behavioural rather than physiological in origin.
Hope this helps
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My wife's cousin used to have several seizures every single day. He had no life.
When he turned 18 he was able to decide for himself to have brain surgery, which carried a 50/50 chance of survival.
The operation was done at a Liverpool hospital and was a complete success. Since then he has had maybe three seizures in four years. He now has a life.
When he turned 18 he was able to decide for himself to have brain surgery, which carried a 50/50 chance of survival.
The operation was done at a Liverpool hospital and was a complete success. Since then he has had maybe three seizures in four years. He now has a life.
Está servira para distraerle.
With only a layman's dangerous knowledge of medicine, I have been told by one who should know that all people are potentially subject to fits or seizures which in some cases could be described as epileptic.
On a sort of linear scale, helicopter pilots are amongst the least susceptible to seizures. Apparently the effects of working in an environment where the sun reflecting off rotating blades over one's head are conducive to 'epileptic' seizures. I think that the CAA, for example, is well aware of this and it has been, in the past and on rare occasions, a problem for certain helicopter pilots.
Without knowing anything much about the condition, I should have thought that, quite apart from collateral damage, sooner or later there might be a danger that some function in the brain might shut down permanently, whicih would be a tragic circumstance .
At the same time as extending the greatest of sympathy might I suggest that you follow Mac the Knife's advice. His medical posts and suggestions are always worth more than a cursory examination. Your daughter might, of course, have to be seen as a private patient but that might be a small price to pay under the circumstances.
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Hi exeng, this is one of the most disturbing tale I have read on here, and you have my sympathy.
I think that there may be several issues here, and I'm not sure if it's appropiate to tease these out via internet, and I'd agree, you do need expert help.
I guess key to fathonming out what's going on here, is the teasing out between an organic (physical), and a psychiatric (emotional) cause. Or there maybe a mixture of both. It sounds like you haven't got to the bottom of this.
Again, I'm very wary of tryng to sort this complex issue on here, but I guess if I knew your daughters case well enough, the first question I'd be asking her, is did she mean to kill herself. Although from your description, it sounds like you think this latest case was physical.
Feel free to ask our advice, but please don't try and play amateur psychiatrist/physician. If your daughter is in a situation which finds her lying on a track, she needs expert help and re-assessment.
Keep us posted.
I think that there may be several issues here, and I'm not sure if it's appropiate to tease these out via internet, and I'd agree, you do need expert help.
I guess key to fathonming out what's going on here, is the teasing out between an organic (physical), and a psychiatric (emotional) cause. Or there maybe a mixture of both. It sounds like you haven't got to the bottom of this.
Again, I'm very wary of tryng to sort this complex issue on here, but I guess if I knew your daughters case well enough, the first question I'd be asking her, is did she mean to kill herself. Although from your description, it sounds like you think this latest case was physical.
Feel free to ask our advice, but please don't try and play amateur psychiatrist/physician. If your daughter is in a situation which finds her lying on a track, she needs expert help and re-assessment.
Keep us posted.
Last edited by gingernut; 29th Apr 2008 at 19:41.
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I have sympathy with your daughters condition, however there does appear to be a confusion over some of the details of her condition. If your daughter does not have a diagnosed mental condition as defined within the mental health act then there is no way she can be sectioned! Indeed, why would she need to be? All cases of epilepsy should be investigated by a neurologist to attempt to ascertain a cause especially in your daughters case in which you describe an escalation in the form of attack. If correct I think you described a Jacksonian/petit mal presentation moving to a grand mal seizure. Accordingly, push for such a consultation. There are several things your daughter can do to minimize the incidence of the fits. A booklet on the subject free from the neurology department would explain all of these. There should also be an address and telephone number of a patient support group. Please do take advantage of this and listen not only to the patients but also to their partners,friends and relatives. Learn of the different "aura,s" manifested, the triggers factors leading to fits etc.I wish you and your daughter well.
Mistrust in Management
Thread Starter
Gingernut
Thanks for the reply. I really don't think that she had any intention to commit suicide and the fact that she had a full blown fit later on during the day whilst with my Wife would be a remarkable coincidence.
Lancastrian. Again thanks for the reply which seems to contain good advice - we will continue to pursue some or all of the avenues you suggest.
Wetbehindthewings. Thank you, an interesting view which may have some bearing on my Daughter. Certainly my Daughter did have some 'issues' a few years ago which we thought she had mainly put behind her. I have to rely on expert opinion as I am just not qualified in any way (in fact I feel quite ignorant) to make a judgement on the causes of any fit. All I can say is that expert opinion so far has diagnosed the problem to be epilepsy - unfortunately the drugs so far prescribed have failed to produce the desired effect.
Riccardo. Again thanks for the input. In the past surgery was considered but rejected for reasons I'm not entirely sure of now. Certainly a 50/50 chance of survival would be seem to be very poor odds but I'm glad it worked out well for your Cousin.
Mac the Knife. Thanks, I think we will do just as you say and look for a complete re-evaluation of my DAughter's condition.
Homonculus. Thanks for the link to the National Eplepsy Centre.
Out of interest since I have been away on this trip my Daughter has seen her specialist who has changed her prescription; so now we wait to see if the change produces positive results. One of the problems we have found is that it never is immediately apparent whether a particular drug regime is working because it may be some time before my Daughter has a fit.
It seems some patients respond well to drug therapy and some just do not. As parents you are hoping for a 'magic bullet' that will cure the problem; I think it is important for all of us to remain optimistic but we all also have to probably accept that a 'cure' isn't around the corner.
This latest 'incident' frightened us all I have to say, but still I think it is important that my Daughter continues to lead as normal a life as possible.
I'll re-post if there are any other developments.
In the meantime thank you all again for taking the time to offer some insight into this problem
Kind regards
Exeng
Lancastrian. Again thanks for the reply which seems to contain good advice - we will continue to pursue some or all of the avenues you suggest.
Wetbehindthewings. Thank you, an interesting view which may have some bearing on my Daughter. Certainly my Daughter did have some 'issues' a few years ago which we thought she had mainly put behind her. I have to rely on expert opinion as I am just not qualified in any way (in fact I feel quite ignorant) to make a judgement on the causes of any fit. All I can say is that expert opinion so far has diagnosed the problem to be epilepsy - unfortunately the drugs so far prescribed have failed to produce the desired effect.
Riccardo. Again thanks for the input. In the past surgery was considered but rejected for reasons I'm not entirely sure of now. Certainly a 50/50 chance of survival would be seem to be very poor odds but I'm glad it worked out well for your Cousin.
Mac the Knife. Thanks, I think we will do just as you say and look for a complete re-evaluation of my DAughter's condition.
Homonculus. Thanks for the link to the National Eplepsy Centre.
Out of interest since I have been away on this trip my Daughter has seen her specialist who has changed her prescription; so now we wait to see if the change produces positive results. One of the problems we have found is that it never is immediately apparent whether a particular drug regime is working because it may be some time before my Daughter has a fit.
It seems some patients respond well to drug therapy and some just do not. As parents you are hoping for a 'magic bullet' that will cure the problem; I think it is important for all of us to remain optimistic but we all also have to probably accept that a 'cure' isn't around the corner.
This latest 'incident' frightened us all I have to say, but still I think it is important that my Daughter continues to lead as normal a life as possible.
I'll re-post if there are any other developments.
In the meantime thank you all again for taking the time to offer some insight into this problem
Kind regards
Exeng
Alcohol and Sleep
Hi exeng,
Interesting that your daughter's consultant has changed her prescription. I presume this is just a slight change in the dosage of the drug(s) she's already on? In my daughter's case, any change of drug regime has always involved a very protracted process of weaning off one, while progressively introducing the other.
One thing seems not to have been mentioned yet on this thread. My daughter (31) used to drink alcohol in typical amounts for her age group. About two years ago, soon after experiencing 2 tonic-clonics (grands mals) in the same day - after a gap of nearly 10 years - she decided to give up alcohol altogether. So far, she seems to be sticking with it. She also tries to avoid sleep deprivation. As a mature student, that can be tricky at times.
Both alcohol and losing sleep are pretty difficult to avoid in the frenetic lifestyle that youngsters working in the city are exposed to. But your daughter might like to give this some thought, if she hasn't already.
Chris
Interesting that your daughter's consultant has changed her prescription. I presume this is just a slight change in the dosage of the drug(s) she's already on? In my daughter's case, any change of drug regime has always involved a very protracted process of weaning off one, while progressively introducing the other.
One thing seems not to have been mentioned yet on this thread. My daughter (31) used to drink alcohol in typical amounts for her age group. About two years ago, soon after experiencing 2 tonic-clonics (grands mals) in the same day - after a gap of nearly 10 years - she decided to give up alcohol altogether. So far, she seems to be sticking with it. She also tries to avoid sleep deprivation. As a mature student, that can be tricky at times.
Both alcohol and losing sleep are pretty difficult to avoid in the frenetic lifestyle that youngsters working in the city are exposed to. But your daughter might like to give this some thought, if she hasn't already.
Chris
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Having suffered from seizures in the form of absences myself, I can only sympathise. These were very distressing for me and the after-effects did present to others as emotional or psychological disturbance.
Also, stress can precipitate seizures, and of course, the perception of what is stressful is entirely individual. Not getting enough rest might well be making the situation worse.
I'm glad that you're getting fresh eyes on the situation.
As Cognitive Behavioural Therapy has been mentioned, I'd like to suggest that this might be a useful tool. I've had it myself for an unrelated issue, and it struck me that it would be helpful for anyone having to live with a long-term medical condition. It's by no means any kind of cure, but if given by someone who is aware of her health issues, it could help your daughter lower her stress levels and have a better quality of life around the limitations currently forced on her by the epilepsy.
Also, stress can precipitate seizures, and of course, the perception of what is stressful is entirely individual. Not getting enough rest might well be making the situation worse.
I'm glad that you're getting fresh eyes on the situation.
As Cognitive Behavioural Therapy has been mentioned, I'd like to suggest that this might be a useful tool. I've had it myself for an unrelated issue, and it struck me that it would be helpful for anyone having to live with a long-term medical condition. It's by no means any kind of cure, but if given by someone who is aware of her health issues, it could help your daughter lower her stress levels and have a better quality of life around the limitations currently forced on her by the epilepsy.
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Exeng, I'm not going to offer any further advice on the subject of your daughter's epilepsy as plenty of good advice has already been offered.
As a parent you will never stop worrying about your child whether or not that child has a medical problem. I'm sure you want the best for her but sometimes the child's choice is not the one which the parent would make. Ask yourself this question; If I were told today that I had a possibly life-limiting disease would I want to make the most of the time available to me and live it to the full but in doing so maybe risking shortening it but nonetheless thoroughly enjoying myself, or would I be overcautious, not doing things I like in case they shortened my life by a few hours and risk becoming a real misery in the process? It takes a special sort of selflessness and courage on the part of a parent to sit back and accept the child's decision without criticism and continue to provide any necessary support. I hope you will have the strength to do that. It won't be easy, far from it, but, should the worst come to the worst, you will have given her exactly what she wanted and needed - the freedom to live and enjoy her own life as she wished. I wish you all well and hope for the best possible outcome for all of you.
Do you let your Daughter continue to catch trains to and from cental London Daily - or do you persuade her to give up the only decent job she has had. Bearing in mind she is an adult and can do exactly as she pleases ...............
As a parent I am stumped, and very worried for my Daughters future.
As a parent I am stumped, and very worried for my Daughters future.
