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Any parents with epilepsy?(58 Posts)
Any other parents with epilepsy out there? Mine was well controlled but became less so when meds changed so I could get pregnant. Post birth I had a tonic clonic and had to go back into hospital. Have had a few myoclonic since but getting better. DS 4 months old.
Have just re-found this thread! In June 2009 found out me and dd have dyspraxia which contributes to tiredness, forgetfulness (very bad). My last tonic clonic fit I think was easter 2010 the first and only one dd has seen. It is definately stress that triggers mine off. Every holiday the change in routine makes my stress levels rocket (dyspraxia is on the autism spectrum so change / lack of routine really bad) i think I still have 'absences' but not sure.
Does anyone else though suffer with the tiredness forgetfulness and frequent feelings of depression?
As previous posters said, epilepsy used to be covered under the DDA, which became the equality act. I haven't had to use it thankfully but my employer does allow me to attend epilepsy medical appointments without having to take leave as epilepsy is a qualifying disability.
Sorry to gatecrash, but really want to help this guy.
If you're diagnosed epileptic, what 'rights' do you have at work?
Collegue has lots of sick leave, which only the HR dept has a problem with. He's been threatened with the sack. We definitely don't want to lose him, he's a really valuable member of the team.
Can you be registered disabled with epilepsy? If you're registered, do you then have protection at work?
Mine was a bit more drastic than that - when I was having absence seizures every 10-15 mins and couldn't hold coherent conversation any more, it was only then that my parents thought "maybe we should take her to the doctor"??! Needless to say, I get annoyed now when ppl talk about kids who 'daydream' a lot - yes most of them are just daydreamers, but one of them may have epilepsy!
it's frustrating isn't scissy I used to wake up confused phone people they'd send me to doc which was useless people only found out when we were at a conference and it happened there. thankfully right at back so didn't cause any scenes!!
I was diagnosed as a teenager (despite having had seizures for years before that - noone knew what they were, they just thought I was weird ) and have been on meds ever since. I've tried most AEDs for my seizures at some point as mine is hard to control, still no licence for me but DC1 is due in 4 wks :D
I have been diagnosed with epilepsy for a few years now but only started during teenager years diagnosed in adult years after being around people who saw it and finally believed me as had many alone at home years before I had my child. thankfully haven't had any since been on meds. :-D
i,ve had epilepsy since i was 17 seizures stopped when i was 22 but came back when i was about 34 am on tegretol prolonged release but seem to still be having them fed up of having blood tests but suppose i will have to my ds is 5 tomorrow and so far i havent had 1 in front of him but probably only a matter of time tried to explain to him but he doesnt quite understand as he hasnt seen 1 what do i say to get him to understand more.
Sorry not read all the thread But this book has just been published. Epilepsy Book for Kids by Layla Ried. It is a really nice book written by a child for children
Hi I had several miscarriages, which was caused by epilepsy, but then in January 2003 I had a son and didn't think with all the misscarriages and epilepsy + drugs that I was on, - lamotrogine 150mg twice a day, keppra 250mg twice a day, and epilim 150mg twice a day; and diazapam 10mg I could then have children. I was wrong he is georgeous, but like very mum, we all say that about our children, but then in May/June things were not right with our son, I noticed that he wasn't reaching his milestones like "normal" chilren and that there was something wrong, I started to panick and called my GP, she looked at him and sent me straight to our local hospital to see a specialist and then in August we were told that Danial has Cerebral Palsy, I was devestated to say the least, and started to first of all blame all the epilepsy medication that I was on and also the birth as he was starved of oxygen when he was born, and this information was not given to us at the time... I have difficult to control epilepsy and can have between 8-12 a month. My son now also carers for me also and I'm unable to drive so I have to rely to either public transport/taxi or friends (which is not always easy as most of them work).
Seems to be 'not happening' ATM, but it's only been 3 months (always fell as soon as looking at a man in the past!), and it's not DH as he is DS2's dad. I'm still worried about the same thing happening, but I am on more meds now, and although not fully controlled, am having a lot less (except last night) seizures lately.
You can talk to me if you like, for what it's worth. I went through the realm of what works and what doesn't and thank God, I seem to be settled for the mo. I was convinced I would suffer whilst pregnant but bizarely I think the babaies helped as my excema cleared up whilst pregnant too. Best of luck with TTC.
Hi! re-found this thread now I'm back on the internet. I was originally Loudmouthmum (I'd forgotten). Have had a hard time lately, a yr ago I was 5 months pregnant, but had a massive seizure and lost my little Korben. My 7 yr old DS was diagnosed coeliac in April. Then, my DD hit puberty and her seizures became much worse, so we started on the meds merry-go round with her. Thankfully, everything's settled down now, and I'm now trying for another baby. I'm now on 1200mg/day gabapentin and 600mg/day Keppra. Would love to chat with people in my situation, feeling a bit lonely with DH out at work.
Have just found this thread, glad I'm not alone. I hadn't had a seizure for ages then had one friday, only just managed to pick dd(5) up from school with ds(2). Think i'd better have a chat with the school secretary, but not sure how to word it.
Thegreatescape: Please don't feel too bad about the BF - I assumed I would (tegretol) but found it too much on my body (tired wise) and it wasn't really happening either - tried expressing for quite a few weeks too.Ended up mixed feeding for 6 weeks but moved over to FF. I felt bad for a while but,you know, we do what we can, and I don't think anyone should be made to feel guilty whatever decision they take, for health or any other reason.
My seizure are well controlled (night only and some auras now) and I couldn't have looked after my son with full scale ones like before where I was out of it for at least a day each time post-fit.
Oh and my son is a strapping healthy 2.5 toddler.
Those babies are gorgeous Merlypuss!
Congratulations Merlypuss! Its good to hear your little fellas arrived safely - i checked out the pictures, they are gorgeous! And yes, a LOT of baby!
As far as feeding goes, I sometimes wish i had perservered more with the bf (I started bf but went back into hospital after 2 days as had a big seizure, ds was then ff from bottle til i came out the next day. I was expressing and ff but not bf as it was tricky getting him to latch on, after a couple of weeks dh went back to work and i didn't have time to express). I didn't get huge amounts of encouragement to carry on bf, my mum ff 3 of us and was worried about my health so encouraged me to ff as thought it would be less of a strain. I wonder now if I should have tried harder with bf. It is not advised to bf whilst taking Keppra but haven't found out why. (not pg yet but thinking ahead!)
Yes the twinies 'popped' into the world on 31st Jan (see profile for photos). They are fine anatomically so we shall see what the future holds for them.
I will fill in on birth details for anyone interested later.
I combination fed for 4 months and now they are on formula and loving it. Thomas is a right old fatty and Isaac is catching up fast.
Interesting to hear about the folic acid being the cause of heavy babies. DT1 was 6lb 15oz and DT2 was 5lb 4oz so that's a lot of baby if you combine the weights.
i am new to this thread, feel for those of you who have had a difficult time, i decided to come off lamictal(lamotrigine) to bf dd 3 she is now 6 m and i had a pretty big seizure over the wkd (first in over a year) so will be weaning and getting back on meds asap, feel like i was pushing my luck for a while...it's reassuring to know there is other mothers in similar situation
good luck to all
Ha! Thanks, gonna read this. Didn't really consider it to be a factor before. I am 5'2 and about a size 12 (on a good day) so didn't expect to give birth to a toddler.
Yes thegreatecape I have bored people senseless by claiming it was the folic acid that made him a big baby! My reasoning for this is that I read a research paper a while back:
"researchers from the University of Newcastle upon Tyne, UK, who examined nearly 1,000 women and their newborn babies, found that higher levels of folate (found in some vegetables, fruits and cereals, and also known as vitamin B9, or folic acid) were linked with increased birth weights"
Full article at:
See it's not because I'm chubby after all!
I'd forgotten all about this thread!
In response to the question about tegretol, I stayed on it for all 3 pregnancies. The neurologist said that as I was well-controlled it would be unwise to change my drugs.
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