SOO pissed off....want to get off this epilepsy f****** rollercoaster!!!

[caitlinnjacksmummy]

Hey , so fed up today , Jack was started on lamotrigine twice a day on monday instead of just once a day, so now on 5mg tabs twice a day, he is also on nitrazepam 4ml morn n night and epilim 4ml morn and night...and never had seizure mon or tues!!! First in ages, especially 2 days in a row, but we went and had a little sleep while DD,6 was at school and once he woke up he had tonic clonic seizure lasting 25 mins...really thought we'd cracked it....so must be changing again, used to be everytime Jack went for a sleep or after waking, and recently, well, for last 2 t 3 mnths bn happening coming outta the bath mainly, but now he has stopped this for last 2 days n suddenly had 1 upon waking, so fed up, will my brave little man ever get a break from this bastard epilepsy?!

[MannyMoeAndJack]

I don't have any experience of epilepsy at all but I hope your ds improves soon, it sounds tough all round.

[2shoes]

O don't know how old you ds is. just posting to give you hope. dd got epilepsy when she was 6. had all the ups and downs. she is now 13 and hasn't had a fit (touches wood) for well over a year.

[caitlinnjacksmummy]

U are lucky 2shoes, Jack is just coming up to 15 mnths...has damage t brain also, left n right temperal lobes, affecting co ordination, sense of smell and memory, cnt sit up, muscle tone is not good, bt is crawling now and fairly coming on, have seen big difference in seizures since bn strted on lamotrigine, but wen he was seizure free mon, tues i was ecstatic, but then today,.... BANG!! So pissed off

[TheodoresMummy]

So sorry you and your DS are suffering

I don't have any experience or advice, sorry.

Hope things improve. Is it likely that the new medication just needs some time to settle in his system ?

[caitlinnjacksmummy]

Excuse my french, but I fuckn hate it!! Sik of it....we get so far n we think we have cracked it n it happens again....so fed up

[LMAsMummy]

Hope you can get the meds sorted. We are still on the road to 'management'. Good luck, hope Jack's OK.

[caitlinnjacksmummy]

Thanks guys, lma's mummy, how old is yr LO? When did you get diagnosis?

[lourobert]

My ds had Williams syndrome and also started having seizures when he was 5 months and was dx woith Infanitle spasms. Seeing your child have seziures is horrible and crul and you feel SO blody helpless. It was worse for us when ds seemed to become aware that something wasn't right.

We tried many meds and different combinations of before we got seziure control. We though we had cracked it a few times also just for the seziures to return and almost certainly upon waking.

YOu mustnt give up hope even at times when your sick and tired of it. We have had seizure control for about 15/16 months now and ds has been weaned from meds for about 3 weeks....touch wood!!!

Epilpesy is a right shit. Hang on in there xx

[2shoes]

not lucky. she is on 220mg of lamotrogine a day. seems to be holding them of. I hate epilepsy. I can cope with cp but have a hard time with the epilepsy(dh has it as well)

[LMAsMummy]

She was 2 when diagnosed, also has CP and hydrocephalus following a brain haemorrhage at birth. DD1 is now 7. She was having wierd 'episodes' from 14 months or so, and then we later got the diagnosis. I hope you get some break through with the drugs and control the seizures. We keep hoping we get there one day!!

[caitlinnjacksmummy]

Thanks everyone, epilepsy is a bastard, hopefully we will get there soon, you get yr hopes up and then u get shot down again......., 2shoes I didn't mean it as "lucky" yr lo has epilepsy, I genuinely meant it as you are lucky u have seizure cntrol, as I don't know wat that is like so far...didn't mean any offence, and to me you are lucky, very, to have seizure cntrol, as we all know only 2 well it is a long and rocky road