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Hi from Reigate

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1 Hi from Reigate on Fri Oct 23, 2009 7:59 am

Krenzia


Hello

My daughter, just 18, was diagnosed with Epilepsy in July - the exact kind is not known to us at the moment. She had lots of fits in July and was in hospital for several days. On Sunday, she had her second episode in the street outside our house which left her with a dislocated jaw and loss of teeth.

I find it all traumatic and lonely. I found this forum and would like to have some support - virtually and meeting up for coffee if that is possible.

She is on Lamotrigine 100mg a day. One of the issues is with her coming to terms with her condition ....

2 Re: Hi from Reigate on Fri Oct 23, 2009 10:35 am

JulieC


Welcome to the forum, take care luv Juliexx

3 Re: Hi from Reigate on Fri Oct 23, 2009 2:47 pm

TJW

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Admin
Welcome to TESG,

We do plan to start monthly meet ups from around mid 2010 and will try to arrange one close by for you.

In the meantime, I hope you find much support here on the forums, and if there is anything specific you would like more information on, please let us know and we will do our best to assist you.

Best Wishes,
Tania x

http://www.TheEpilepsySupportGroup.com

4 Re: Hi from Reigate on Sat Oct 24, 2009 5:58 am

sophie

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Hi and welcome

I can understand how u feel.
is she increasing her med slowly?
if you need a chat please don't hesitate i'm not a expert, it's been a year now since my little girl has been diagnosed, but it nice to talk with people who understand how it feels on parent side of it too.
Good luck
Sophie x

5 Re: Hi from Reigate on Sun Oct 25, 2009 4:32 am

bigbull

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Admin
welcome to the forum we are here to help you at any time and hopfully your daughter is ok and you will find all the info here and you can talk to any one here too

nick

6 Re: Hi from Reigate on Mon Oct 26, 2009 2:32 am

Krenzia


Thanks, I am glad to be here. It's been pretty lonely and the GP doesn't really want to know about the emotional turmoil around epilepsy. May just be old school that the "symptoms are treated" rather than the person and family...

will do my best to offer as well as receive support

7 Re: Hi from Reigate on Mon Oct 26, 2009 3:23 am

sophie

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Again don't hesitate

xx
Sophie

8 Re: Hi from Reigate on Wed Nov 11, 2009 2:11 am

cazzy79

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Hi Reigate,

I'm sorry to hear what you've been put through. I had my first ever fit last Dec, a grand-mal. I was put on meds, lamotragine but still kept having fits, all types of fits. I was transfered to a new Neurologist but he was just a waste of time really. Wanted witness accunts which he seemed to dissregard and even said it would be good for someone to video me having the fit, as if!!!!! Anyway, he's had me put through loads of tests and since my meds have been increase to 400mg I haven't had a fit since July. Still get jerks and ansences but my memory now sucks. As a patient u have a right to choose where ur daughter goes for treatment. Look up info online. Plus there are many different meds out there and it's finding the right dose that will be tricky. Has your daughter got some kind of 'medic alert' which tells people her situation if she's out and about on her own and has a fit? Anyway, I'm here if u ever want to get in touch. take care

9 Thanks Cazzy on Wed Nov 11, 2009 2:26 am

Krenzia


I really appreciate your message. Its a wake up call when you realise that all is not what it seems with the medical profession. Yet, it is not open that they dont know or whatever.

Since writing that. Weve had more consultations and the GP has offered to arrange more support. This is good news. I think on of the problems is that my daughter is 18 yet isnt really an adult when it comes to taking a stand etc.

Her meds have been increased and she is taking more responsibility on managing herself, her lifestyle etc so as to reduce the potential of fits.

The issue is that the MRI cand EEG have come back as normal and I think this alters the medical professions view and interest in us.

And, yes, she is getting a bracelet to wear. It does worry me what would happen if she was in London or at a club when that happened.

PS the apostrophe sends me to a search bar - that is why I havent used it

10 Re: Hi from Reigate on Wed Nov 11, 2009 2:53 am

cazzy79

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Hi, thanks for your response. I'm glad to hear that the GP has offered to arrange more support. It is frustrating when they make a diagnosis like this and then just send u on ur way, so to speak. Have to tried to search for any real time support groups in hospitals? Is ur daughter being seen by a Neuro, if so, ask the staff if there are any support groups which could be useful to all of you.

Don't worry about tests coming back as normal, most of them do. I've had a normal EEG, the first one. Then I had a sleep deprevation EED, that was normal to. Just recently I've had one for a week and won't know the results of that till Dec. These tests are very limited as the purpose of them is to catch u having a fit and so it can be recorded. I think with the week long EEG I had they can look for underlying brain signals which are epeleptic like. Speak out to youtr GP explaining this that of course the tests won't show anything as she did not fit during it. My first MRI was just outside the normal and I've had a second one, again, waiting for the results. It's good for ur daughter to be taking more responsability. I know it took me a while to accept the diagnosis and now not being able to drive it felt like my independence was taken away, it hasn't really, just take twice as long on the bus, lol. I to have had to make some life changes, slowing down, making sure I have enough rest ect..... it's a hard thing to do but fits don't feel nice as I'm sure your daughter will agree so any lifestyle changes to help prevent them is a good thing. They WILL find the right dosage, it took nearly 7 months to get mine under control. Alos finding the right med or med combo can take time as each person is different. I was constantly worried about having fits out of the house, on the bus or on the street but I think the more anxious u get about it the more likely it could trigger. I don't have any warning signs either, does your daughter? The braclet certainly helps me, it has contact information, name, drugs and dosage on it so if anything were to happen, the information is there. I know its not easy but try not to worry, this can all be controlled. As a parent I know the worry doesn't go away, My mother has become overprotective of me and I'm 30, lol. We just constantly check in with each other and if she hasn't heard from me for a few days then she comes over. My friends are the same. Everyone in my life knows the situation and what to do if I were to fit with them. Your daughters life doesn't need to stop but maybe it might be worth encouraging her just to be more sensible and give clubbing a miss at the moment coz the bright lights can also trigger a fit. It's not forever, she could go back to her clubbing, just when it's all under control. Sorry for my essay. Hope some of it helps.
Take Crare

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