Daughter had a fit this morning

Morning, my daughter rang me a few mins ago and told me that she had a fit while standing, her daughter was behind her while this was happening and was saying mummy why are you doing that, she could hear her but couldnt respond, her head was flung back her eyes rolling and she was shaking. She wont go and see anyone about it, i have pleaded with her but she says if it happens again then she might. Is this something to expect with the disease?? Please help a worried mum. x x Also can you get Behcets and Neuro Behcets together??

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  • I'm so sorry to hear that, how distressing for you all.

    You can have BD/Neuro BD/BD with neuro involvement - there are various manifestations.

    I know this is going to sound a bit harsh and I'm sure you know it already, but perhaps from one Mum to another it might help to 'hear' it:

    You can't make your daughter do something if she doesn't want to.

    She rang you for a reason - I wonder what that was - reassurance? Advice about what it was? You can't give her either. It could be meds, something neurological, something non BD related - anything. I assume she hasn't had a fit before, so she doesn't know for sure that's what it was. Looking at it from the outside, clearly it’s something she should get checked out but it's her choice and she knows her options - contact her Specialist, see her GP, contact the Society, Centre of Excellence (if she is in UK) ..do nothing...

    If she is prepared to take the risk of it happening again then there isn't much you can do about it.

    I expect you tried this already but would the 'angle' of suggesting she get checked out for her daughter's sake help to persuade her?

    What would she do if it was her daughter having the fit?

    As a mum it's an awful and desperate feeling when you are worried about your child and helpless to do anything, but if you have done all you can (I bet you have and then some!) and it made no difference, then please please don't be hard on yourself.

    Best wishes

    Tig

  • Thanks Tig for your reply, she has never had one before, i spoke to her this morning when she rang me and i said if it was Marissa who it had happened too would she sit back and wait for the next one, obviously she said no, but she wont budge, " Not going, Not going " is all im getting she wont talk about it, she said tonight that for the last few days she hasnt managed to get her words out right, is this also a sign do you think?? I have told her when we go to COE in March if she does not mention it then, then i am, as something needs to be done incase it is something that can be treated one way or another. Ive got to just sit back and keep worrying from now until March. I have told her she shouldnt be driving but i just get the same answer, but she has promised not to drive long distance, not much help i know but something anyway. Thanks again for you input. x x x

  • I have just emailed St Bart`s COE and told them my worries, i know she wont like it but i`m her mum at the end of the day, and mum`s worry. x x

  • and know best 9 times out of 10 .......blessed be my friend

  • You did what you had to do and you know she won't like it but hopefully at some point she will come to understand that you did it out of love and concern. Good luck.

    x

    Tig

  • I`ve told her what i had done and i needed to find out for my own sanity, and she was understanding. Phew! x x

  • I wonder. . . maybe, just maybe, she was a little scared to do it herself and wondered if you might do it for her? :-)

  • Tamirra, my heart aches for you. I would go through Behcet's with a cherry on the top to prevent having to stand by and watch my daughter suffer like this in front of my grand daughter. I have been so thankful that this illness didn't strike me until my daughter was 18 years old and I feel so sorry for those trying to deal with Behcet and young children.....it breaks my heart. All my love to you and well done for taking action. Jill x

  • Thank you Jill, if i could take this illness from her in a heart beat i would, i dont like to burden my elderly parents with my worries but i do as i can`t talk to my husband as he just burries his head in the sand and wont believe this is happening to his daughter, which makes it more difficult for me to deal with, i have very good friends who i can talk too but it`s not there issue it should be mine and my husbands. He blames himself for her illness thats the problem and i know it. Thanks for your kind words. x

  • Hi tamirra

    You are so brave and your daughter is so lucky to have your support. I am pretty sure she told you knowing that you would take that decision out of her hands. It must be very difficult to know what is the right thing to do and it is not betrayal as you would be failing her if you let it carry on.

    It could be something simple like the medication but even if it isn't, it is even more important to get her to see someone soon.

    Good luck with this...let us know how she gets on

  • Thank you Andrea i will let you all know. Her daughter acted out what she did, she still thinks she was doing a silly dance, Bless her, but if it turns out to be more serious then we will have to teach er to call me if it should happen again, lucky i only live 5 mins car drive from them. x PS she goes to the gym about 3 times a week, could she be over doing things there?? x

  • That's a good idea tamirra...to teach your granddaughter to call if she is worried that mummy is ill or acting strange. It will make her feel more confident as I bet your granddaughter is possibly worrying inside.

    As for 3 times a week in the gym...this does sound quite a lot knowing what your daughter has been through in the last year or so......but I couldn't say if this is the cause of the fit.

    Ideally this needs to be discussed with her specialists...have they arranged to see her yet ?

  • Hi Andrea, ive still not heard from the hospital nor has Sinitta, not very good is it? Her memory seems worse than ever today, she had given me her debit card to look after so she dosnt spend too much, not even 5 minutes later she said to me, dont forget to get my card off me, so i said you have only just given it to me, then she remembered. Strange : / I did tell her i think she could be over doing the gym as she is so tired and like zombi`ed out, i just dont know whats going on with her at the moment. Worrying!! x x

  • Can you get in contact with the Nurse from the Centres of Excellance that she goes to. I think it's the London one isn't it?

    The contact details on the Behects Society Site says it is

    Clinical Nurse Specialist/Centre Manager

    Sally Tillett

    Tel: 020 3594 6087

    If this is still the right number she will know what to do about it....there is also Jean Simmonds the Healthcare Support Worker who could point you in the right direction for the Nurse her details are Jean Christians on Email address Jean@behcetsdisease.org.uk

    Hope this helps

  • Thank you so much for the details you found for me, much appreciated. x x x

  • UPDATE...... Sinitta eventually got a call from the COE they are sending her an appointment to see a neuro specialist, so will let you all know once we have seen them. x x

  • That's good tamirra and well done...hopefully it will be very soon...give Sinitta my love.

  • Hi there I was wondering how things turned out for your daughter? I just joined this group and posted a question about seizures. I hope she is doing ok. My memory is also very fuzzy.

  • Hi, we have an appointment end of the month at COE so hopefully will find out more then, she hasnt had anymore luckly but her memory is still very poor. Will keep you up dated. x x

  • Thanks for replying so soon! I hope everything goes well and she gets the help she needs. xxx

  • xxxx

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