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Bonjour from Jersey

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1 Bonjour from Jersey on Thu Oct 01, 2009 12:45 am

sophie

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Hi everyone
I'm Sophie and the mum of Anais 3 and Eloise 11 months.
Anais has been diagnosed with unusal type of Epilepsy in Sept 2008, she 's now on 20 mg of clobazam and 200 mg of Lamotrigine.

Sophie

2 Re: Bonjour from Jersey on Thu Oct 01, 2009 2:18 am

TJW

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Admin
Welcome to the forum Sophie,

Please let me know if there is any specific information you require regarding Anais' epilepsy. I'm always willing to research and offer support.

I hope you find the site to be a useful tool and an enjoyable place to be.

Best Wishes to you, Anais, and Eloise,
Tania x

http://www.TheEpilepsySupportGroup.com

3 Re: Bonjour from Jersey on Thu Oct 01, 2009 2:31 am

sophie

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Thanks Tania

Going to see the neurologist in Southampton on the 19.
I've still got a lot to learn about Anais's Epilepsy.
How's your pregnancy going?
And have you got any news about Sean?

Thanks again
Sophie x

4 Re: Bonjour from Jersey on Thu Oct 01, 2009 2:53 am

TJW

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Admin
Good luck for the Neuro appointment, what kind of Epilepsy has Anais been diagnosed with?

Pregnancy is going wel thank you, Ruby has taken to rib kicking me already and getting stronger everyday! lol Can't wait till January when I finally get to hold her!! Very Happy

I think Tara is taking Sean to Westmead today for a medication update with his Neorologist. The last I heard he was doing really well, his seizures had started to settle down and his Epilim levels had come down too. His wheelchair is all paid for now and I believe he's also getting a seizure alarm, which is great news! I seem to recall Tara saying Seany has a lot more energy too, which I was very pleased to hear about, bless him. Things are looking up for them!! Very Happy

Best Wishes,
Tania x

http://www.TheEpilepsySupportGroup.com

5 Re: Bonjour from Jersey on Thu Oct 01, 2009 3:15 am

sophie

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Brillant news for Sean i'm so please and good to hear about Ruby too.

Has for Anais she does quiet a lot of different fits body jerk, head jerk only, did some abscence one, could be falling like a piece of wood etc before med could have at least 100 of them a day but since on the med only little one will comeback after an average of 3 months within the last increase like her face will look like she's very drunk for a few sec, some arm jerk and head jerk. She just had her last lamotrigine increase 3 weeks ago so will see. But even with just little fits of a fews sec it seems to have a effect on her developpment mainly her speach she a bit late nothing to bad but we r also seeing a speech therapist.
My other concern is that she's very pale and look so tired even thought she's full of energy most of the time, and she get sick regulary at least once a month if not twice (vomiting all night and morning) do you know if that could be related?

Sophie
x

6 Re: Bonjour from Jersey on Thu Oct 01, 2009 3:42 am

TJW

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Admin
Not sure about the looking pale and tired when still full of energy, although the upset stomach can be a common side effect with Lamotrigine.

The effects on development may be down to several factors. ie:

* Lack of concentration (which is also a side effect of Lamotrigine and can make it harder to hold information in or process it as quickly so it may cause a delay in response time)

* The time lost during seizures (which although may be a few seconds at a time, when added up can work out to be a lot of time over the course of a year, as you mention Anais used to have 100 or more a day, that's vital information that she was losing each time, and now that her seizures are ess frequent, you may see an increase in her development as she is more alert and aware of her surroundings and what is happening)

* Other factors associated with the specific Epilepsy Syndrome such as the part of brain where the seizures originate from. (I myself have problems in my left temporal lobe which affects word recognition and retrieval. Such as when I'm speaking I often get words muddled up with similar sounding words but that have a completely different meaning, and the same when I am listening to what is said to me. Strangely enough it is only an auditory problem as reading, writing, and typing are all fine.

Hope this helps some

Best Wishes
Tania x

http://www.TheEpilepsySupportGroup.com

7 Re: Bonjour from Jersey on Thu Oct 01, 2009 3:50 am

sophie

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Thanks alot Tania
x

8 Re: Bonjour from Jersey on Thu Oct 01, 2009 3:54 am

TJW

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Admin
No problem, I'm always happy to help x

http://www.TheEpilepsySupportGroup.com

9 Re: Bonjour from Jersey on Thu Oct 01, 2009 7:35 am

bigbull

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Admin
welcome to the forums hope you find all the info you need

nick

10 Re: Bonjour from Jersey on Tue Oct 20, 2009 3:24 pm

TJW

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Admin
Hi Sophie, how did the appointment go yesterday?
Hope all went well x

http://www.TheEpilepsySupportGroup.com

11 Re: Bonjour from Jersey on Fri Oct 23, 2009 10:34 am

JulieC


Welcome to the forum, take care luv Juliexx

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