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Going to a&e for suspected seizures but hate being touched? Watch

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    Hiya all
    I'm looking for advice regarding suspected seizures. I'm 16 now, and a few weeks ago woke up with blood everywhere (turned out I bit my tongue) and wet sheets. I was instantly worried about seizures so I set a camera up in my bedroom which i never leave.Sure enough it captured the seizure, which was quite scary. Although i didn't really shake. Just tremble slightly. Basically there was a point where I went stiff as a board. My arms clamped down by her side, my hands made a tight fist to the point that my nails dig into and cut my palms, my legs stretched neck stretched back and eyes rolled back into my head . I was also making a kinda grunting sound. After about 15 seconds I relaxed again but then it happened again.

    All in all I had 8 separate seizures that lasted 7-20 seconds each. Afterwards I just slept because I felt really tired and weak for several hrs. Anyway point of the story has anyone else got seizures like this? They seem to fit tonic description but my arms don't raise above my head. I was thinking about going to the doctor (which, by the way, is a huge deal for someone who won't tolerate being touched in any way ever.) but i don't want to be through the stress of it to be laughed at and told it's nothing. That's the way my parents have reacted and just tell me to get over myself.

    To get to a&e I'm going on a sleepover with my friend and she's going to take me because my parents won't let me go around here.

    Ok so my questions are
    - I'm 16 so Ik I can go to a&e but what about consent? Will they have to tell my parents?
    - I'm taking a friend who I know and trust so she's literally the only person I know who can touch me. I do get very agitated and growl/hit/ bite if touched. (God the joys of autism)
    - Will my aggressiveness if handled affect my wishes? Will I be deemed to not have capacity?
    - Anyone been in the same boat seizure wise?

    Any ideas??
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    (Original post by Anonymous)
    Hiya all
    I'm looking for advice regarding suspected seizures. I'm 16 now, and a few weeks ago woke up with blood everywhere (turned out I bit my tongue) and wet sheets. I was instantly worried about seizures so I set a camera up in my bedroom which i never leave.Sure enough it captured the seizure, which was quite scary. Although i didn't really shake. Just tremble slightly. Basically there was a point where I went stiff as a board. My arms clamped down by her side, my hands made a tight fist to the point that my nails dig into and cut my palms, my legs stretched neck stretched back and eyes rolled back into my head . I was also making a kinda grunting sound. After about 15 seconds I relaxed again but then it happened again.

    All in all I had 8 separate seizures that lasted 7-20 seconds each. Afterwards I just slept because I felt really tired and weak for several hrs. Anyway point of the story has anyone else got seizures like this? They seem to fit tonic description but my arms don't raise above my head. I was thinking about going to the doctor (which, by the way, is a huge deal for someone who won't tolerate being touched in any way ever.) but i don't want to be through the stress of it to be laughed at and told it's nothing. That's the way my parents have reacted and just tell me to get over myself.

    To get to a&e I'm going on a sleepover with my friend and she's going to take me because my parents won't let me go around here.

    Ok so my questions are
    - I'm 16 so Ik I can go to a&e but what about consent? Will they have to tell my parents?
    - I'm taking a friend who I know and trust so she's literally the only person I know who can touch me. I do get very agitated and growl/hit/ bite if touched. (God the joys of autism)
    - Will my aggressiveness if handled affect my wishes? Will I be deemed to not have capacity?
    - Anyone been in the same boat seizure wise?

    Any ideas??
    Going to your GP may be a better option than this complicated A&E plan. You could make an appointment and go with your friend and the videos your have of your episodes. A&E is for emergencies and this sounds like (unless you have a bad episode at any point) it would be more of a GP matter.
    You could also call 111 to see if they can give you any better advice on who to see.
    But you do need medical help if you're having seizures so if this is how you can get it then fair enough

    As far as your questions go:
    You should be fine with consent at your age.

    Tell people about your issues when you get there and before anybody touches you. They will have to get close to you and touch you at some point and they will likely need to run some tests too. There is no way you can avoid them needing to do that, but giving them warning and employing any tactics that help you (like bringing your friend) should help.

    Your issues shouldn't stop you getting the care you need, but may make things more complicated. They should be used to dealing with that sort of thing though so just try your best to stay as calm as you can and let them do whatever they need to do. It shouldn't be too big of an issue.

    I've not been in the same boat myself, but you may find people who have in other online forums. Somebody might appear hear too.

    It's a shame your parents aren't being very understanding since you are clearly having issues. Have they actually seen one of these episodes before? If they haven't then they may become more supportive after seeing one.

    Hope that helps and good luck
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    (Original post by Kindred)
    Going to your GP may be a better option than this complicated A&E plan. You could make an appointment and go with your friend and the videos your have of your episodes. A&E is for emergencies and this sounds like (unless you have a bad episode at any point) it would be more of a GP matter.
    You could also call 111 to see if they can give you any better advice on who to see.
    But you do need medical help if you're having seizures so if this is how you can get it then fair enough

    As far as your questions go:
    You should be fine with consent at your age.

    Tell people about your issues when you get there and before anybody touches you. They will have to get close to you and touch you at some point and they will likely need to run some tests too. There is no way you can avoid them needing to do that, but giving them warning and employing any tactics that help you (like bringing your friend) should help.

    Your issues shouldn't stop you getting the care you need, but may make things more complicated. They should be used to dealing with that sort of thing though so just try your best to stay as calm as you can and let them do whatever they need to do. It shouldn't be too big of an issue.

    I've not been in the same boat myself, but you may find people who have in other online forums. Somebody might appear hear too.

    It's a shame your parents aren't being very understanding since you are clearly having issues. Have they actually seen one of these episodes before? If they haven't then they may become more supportive after seeing one.

    Hope that helps and good luck






    Thank you so much! The reason I say A&E is because my doctor is very good friends with my parents and also nhs 111 advices going there rather than a go bc we don't know what's causing the seizures. But thank you so so much
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    (Original post by Anonymous)
    Thank you so much! The reason I say A&E is because my doctor is very good friends with my parents and also nhs 111 advices going there rather than a go bc we don't know what's causing the seizures. But thank you so so much
    Good point. Certainly would seem like a good idea if you're actually having seizures around that time since your GP can't do much in the way of actual treatment. And I'm not going to argue with advice from 111.
    Your doc can't tell your parents anything if you see them though btw- doctor patient confidentiality.
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    I find this patiant confidentiality interesting. Hopefully they won't tell my parents and I can be tested in relative peace
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    (Original post by Anonymous)
    Hiya all
    I'm looking for advice regarding suspected seizures. I'm 16 now, and a few weeks ago woke up with blood everywhere (turned out I bit my tongue) and wet sheets. I was instantly worried about seizures so I set a camera up in my bedroom which i never leave.Sure enough it captured the seizure, which was quite scary. Although i didn't really shake. Just tremble slightly. Basically there was a point where I went stiff as a board. My arms clamped down by her side, my hands made a tight fist to the point that my nails dig into and cut my palms, my legs stretched neck stretched back and eyes rolled back into my head . I was also making a kinda grunting sound. After about 15 seconds I relaxed again but then it happened again.

    All in all I had 8 separate seizures that lasted 7-20 seconds each. Afterwards I just slept because I felt really tired and weak for several hrs. Anyway point of the story has anyone else got seizures like this? They seem to fit tonic description but my arms don't raise above my head. I was thinking about going to the doctor (which, by the way, is a huge deal for someone who won't tolerate being touched in any way ever.) but i don't want to be through the stress of it to be laughed at and told it's nothing. That's the way my parents have reacted and just tell me to get over myself.

    To get to a&e I'm going on a sleepover with my friend and she's going to take me because my parents won't let me go around here.

    Ok so my questions are
    - I'm 16 so Ik I can go to a&e but what about consent? Will they have to tell my parents?
    - I'm taking a friend who I know and trust so she's literally the only person I know who can touch me. I do get very agitated and growl/hit/ bite if touched. (God the joys of autism)
    - Will my aggressiveness if handled affect my wishes? Will I be deemed to not have capacity?
    - Anyone been in the same boat seizure wise?

    Any ideas??
    As the above poster said - The doctors will not do *anything* without asking you first - Explain your autism means being touched is a real problem and they will take it slower, or alter their methods to fit whatever check ups they need to do.

    A similar thing happened to my friend - Is Epileptic, but it's managed relatively easily!

    Good luck, I hope all goes well for you. 😊
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    Thanks all for your kind words! I really do appreciate it.
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    (Original post by Anonymous)
    Thank you so much! The reason I say A&E is because my doctor is very good friends with my parents and also nhs 111 advices going there rather than a go bc we don't know what's causing the seizures. But thank you so so much
    A&E isn't a convenient alternative to your GP. Your GP is bound by confidentiality and cannot say anything to your parents. If you are not confident in this then you need to find another GP.

    A&E isn't going to do anything different and may well tell you to go and see your GP after a long >4 hour wait. Also if you have a problem being touched then going to A&E isn't going to change anything. If anything you're more likely to be touched by the nurse assessing you as well as the doctor.

    A&E is for emergencies, e.g. a seizure that doesn't terminate or if you had problems breathing. Inappropriate attendees just increase the waiting time for people with life threatening emergencies.
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    (Original post by Anonymous)
    I find this patiant confidentiality interesting. Hopefully they won't tell my parents and I can be tested in relative peace
    They absolutely will not tell your parents. They aren't allowed to.

    This is from the NHS website:
    "If you're 13 to 16, you have the same rights to confidentiality as an adult and the doctor, nurse or pharmacist won't tell your parents, or anyone else, as long as they believe that you fully understand the information and decisions involved."
    (http://www.nhs.uk/Livewell/Sexandyou...myparents.aspx)

    Basically that means your doctor can't tell you parents (or anybody else) anything (even if they are close friends) or they could be fired.
    Anything you say in the appointment is confidential. The only people they might tell without asking you first are medical professionals involved in your care (like a hospital or specialist if you get a referral) or the police if they feel you are being abused or otherwise at risk.

    16 is also the medical age of consent which means your parents wouldn't be needed even if you needed any treatments.
    At this point the only reason your parents will find out about any of your medical care is if you tell them, you give permission for them to be told or in an emergency (assuming they are your emergency contact and next of kin) or if you are unable to make decisions (like if you had severe special needs or brain damage).
    Past that, everything is confidential. Even if the doctor were your mum, she still wouldn't be able to tell your dad.

    If you're still worried about it or think it could be awkward though you can ask to see a different doctor. Just ask about it when you make an appointment and they should be able to book you in with somebody else.
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    You can go to A&E without your parents, but the doctors will probably want your parents to know about your seizures so they're prepared to help if you have a really bad one.

    Tell your doctors about how you feel about touch, having an open dialogue with your doctors about this kind of thing is so so so important. If you have video evidence they may not have to touch you at all anyway. Talk to them about how you feel and they'll work with you.
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    • Thread Starter
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    Thank you all!!!

    What I've decided to do is book in as a temporary patiant at my friends doctors, and see what they say, as my friend pointed out, they can always refer me to a&e if needed.

    I'm glad to hear that I do have a say in whether or not my parents are going to be told, and am starting to look forward to the day I just get it sorted and I don't have to worry about falling unconscious or anything like that as much bc I'll have a support group and will know how to manage my seizures effectively. ut

    The touch thing is going to be a challenge, no doubt about that, and I'm open to any coping statagies anyone else employs for similar things. I think having my friend there to comfort me will definitely help.

    Ok so next question about next of kin - at what age can I change it? Is there a minimum age for something like that? If I was ever to have an emergency, my parents are the last people in the world I'd want present because all they tend to do is undermine doctors with advice for google and hiss at me to stop attention seeking and get up. Honestly you should have seen them when I got sepits a few years back!

    Thanks for all your advice please keep it coming. I'll keep you all updated
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    Why don't your parents care though? Seizures are serious to have!
    (Btw, it's surprising I read your thread. I have anxiety over people having seizures/fainting!!) it must be awful and scary which is even more concerning that your parents aren't taking it seriously!!
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    (Original post by Anonymous)
    Thank you all!!!

    What I've decided to do is book in as a temporary patiant at my friends doctors, and see what they say, as my friend pointed out, they can always refer me to a&e if needed.

    I'm glad to hear that I do have a say in whether or not my parents are going to be told, and am starting to look forward to the day I just get it sorted and I don't have to worry about falling unconscious or anything like that as much bc I'll have a support group and will know how to manage my seizures effectively. ut

    The touch thing is going to be a challenge, no doubt about that, and I'm open to any coping statagies anyone else employs for similar things. I think having my friend there to comfort me will definitely help.

    Ok so next question about next of kin - at what age can I change it? Is there a minimum age for something like that? If I was ever to have an emergency, my parents are the last people in the world I'd want present because all they tend to do is undermine doctors with advice for google and hiss at me to stop attention seeking and get up. Honestly you should have seen them when I got sepits a few years back!

    Thanks for all your advice please keep it coming. I'll keep you all updated
    As far as next of kin goes, it's not a properly legally defined thing who is your next of kin. It's generally assumed that it would be a partner or blood relative though.
    In the case of an emergency, the hospital will try to contact anybody close to you. They may do this by checking for an emergency contact in your records or checking your phone.

    If whoever is contacted is close enough to be considered next of kin they will discuss your treatment with them (unless you ask them not to).
    They cannot make any decisions for you though, unless there is a specific legal agreement in place that says they can (which will not apply in your case).
    Any treatment decisions will be made by you or by the medical professionals in your best interest (if you are unable to decide yourself).

    Basically that means that if you were to have a seizure and end up in hospital unconscious, the hospital would likely call your parents and ask them to come in. They would keep them up to date with what's going on, but your parents would not be able to make any medical decisions for you. And, when you woke up, you could ask to not have them there or for them to not be told any details.
    Obviously, if you were conscious you could tell them who you wanted them to contact (and if you didn't want them to discuss things with anybody).

    If you wanted you could ask at your (or your friends) doctors surgery about how to add an emergency contact so they could call somebody else other than your parents, but as annoying as they may be I would suggest you keep your parents in because they are your family and would likely be the people who would drop anything to come support and care for you.
    Also bare in mind, it could be a big ask for whoever else you would choose since it would fall to them to decide if they should call your parents etc.

    I hope that helps. If you have any more questions or concerns I suggest you ask at your friends surgery since they should know all about it. You can also look on the NHS website or elsewhere online for information. These links may be useful for you
    (http://www.nhs.uk/chq/Pages/speaking...es-health.aspx)
    (https://www.royalfree.nhs.uk/patient...t/next-of-kin/)
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    Thank you all.... I'm looking to get another emergency contact in. She's blood but a bit more tolerable then my parents.

    It's nothing personal my parents just don't have any sympathy for the sick that's all. Everyone who suffers from anything to them is just a lazy person who makes up excuses for why they can't do things..... idk they're nuts
 
 
 
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