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Our story so far

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1 Our story so far on Fri Dec 04, 2009 1:49 pm

sophie

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Hi

I've got 2 gorgeous girls, Anais 3 and Eloise 1 and there's my book

when Anais was about 1 years old i've notice that from time to time during dinner that she will have a little head jerk lasting only 2 sec and i was the only one noticing neither my partner or the nursery ever seen her doing it ( very frustating) then in sept 2008 Anais got a cold like any other cold she had previoulsy but for some reason the head jerk happen a lot more at this point everybody could see it then within days it was the head and arms and legsthis would occur at least 60 times a day if not more only lasting up to 5 sec each, the GP write to the hospital.Two days later (17/09/08) i've just took her their at this point she also was loosing her balance and we had quiet a lot of near miss of her really injuring herself. the P wanted her to have a EEG done beeing in Jersey we have the equipment but not the professional they come over from the UK once every 3 months so we been told that we will be send to southampton witn 2 to 3 weeks. the following day i received a phone call from the neuro in Southampton wanting us to take Anais the following day, which my other half did has i was 9 months pregnant with Eloise so not allowed to fly. EEG done Anais has unusal begnin partial E and we started a treatment straight away which was Clobazam , Anais carry on having fits to 100 a days of the above plus drop one abscence etc and on top of it i might sound horrible but she wasn't my little girl anymore the body was the same but her eyes it hard to explain it wasn't her the fits were hard enough without looking at your own child and beeing able to see her it was has if i lost her (feels horrible to say that), at that point we reduce clobazam to 10mg morning and night and introduced Lamotrigine slowly up to 100mg in the morning and night my gorgeous girl was back the fits did change though now it was a lot more settle her face would look drunk for a few sec and her eye lid would drop more on the right side also she would be sick during the night quiet regulary never though it could be some fits but it was. So today she's on 300mg of Episenta 100mg of Lamotrigine and 5mg of Clobazam (until next friday then no more Clobazam). so far no more sickness still the face and eye but only rarely, we r trying to get Anais some help with her communication skills, Attention and maybe motor (she's really unsteady).

I wasn't joking when i've said my book but you know what it actually feels good to put it in writing.
Ps: Sorry for spelling mistake

Sophie xxx

2 Re: Our story so far on Tue Jan 05, 2010 10:46 am

sqklein


We have just put our son (10 years old) on Keppra. He has had 3 seizures, one lasting about 8 mins. We are terrified, all of his treatments and diagnosis has been done at the ER (Hospital Emergency Room) so now I am going to get a second opinion and make sure it is BRE, and not a brain tumor or something (My friend had a benign brain tumor when he was younger which caused seizures, they operated and he is fine... MIT graduate no less). I hope you are having some success in the treatment of your little girl.

3 Re: Our story so far on Tue Jan 05, 2010 1:06 pm

sophie

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Hi sorry to hear about your son.

you should be refer to a neurologist, will probably have a MRI and EEG, hopfully the MRI would come back clear and the EEG doesn't always show something but can give you more info if some brain activity happen while he's having it done. May i ask which hospital is near you? beeing in Jersey we've been refered to Southampton.
Has for Anais so far it's not too bad still a few things that we will need to check waiting to do a overnight EEG among other things.She also will start to get some help this month at nursery one to one a hour every day.
Keep in touch
Sophie xx

4 Re: Our story so far on Tue Jan 05, 2010 7:13 pm

sqklein


Sophie,

Thanks for your post. We live in Little Rock, Arkansas, USA. Hopefully we will get an appointment with the neurologist soon. He has had at CT scan, an MRI, and a EEG... all at the Emergency Room. I would like to see a neurologist during the day when things are not so hectic. Right now we would have to wait until March for an appointment, but we went to our primary doctor today and he making a Doctor to Doctor call for us to hopefully get us in sooner.

Thanks again,
Suzanne

5 Re: Our story so far on Wed Jan 06, 2010 2:29 am

sophie

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Suzanne

I hope he will be able to get you a appointment, i know what is like (scary). If you have any questions or just want to talk to someone about it please don't hesitate, i might not beeing able to give some answer ( i'm not a expert) but someone here might be Tania has a lot of knowledge about E and she's lovely too.
You take care and please keep in touch.

Sophie xx

6 Re: Our story so far on Mon Jan 18, 2010 9:10 am

sophie

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Hi Suzanne

How r u?
any luck with the appointment?
Thinking of you

Sophie xx

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