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
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