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Any parents with epilepsy?

(58 Posts)
newy Sun 12-Aug-07 14:26:37

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.

Kaz1402 Tue 28-Aug-07 14:15:17

Hi - I suffered a huge tonic clonic (20 minutes) when I went into labour (July last year). Went on to deliver healthy boy, but have continue to suffer from seizures (always nocturnal and always big - min. 5 mins) ever since. GP, Neurologist, etc. etc. totally useless. Really depressing cos can no longer drive and live in the sticks, so really stuck at home most of the time. Still undergoing tests ... next one is sleep clinic!

newy Wed 29-Aug-07 13:06:50

Sorry to hear that. I was diagnosed when I was 10 so got a little use to it although in those days, no-one (ie family) really mentioned it. Now I think they would be joining support groups, raising money etc! I never really learnt to drive but that would be a pain in ass, now I live in London where car is more of a hindrance. My neurologist is very nice but find when I ask questions he looks them up on the internet!
I have increased my tablets of late which has helped alot. Try not to get too depressed, I think its about 85% of people have their seizures controlled its just it can take a while to find the right meds and dose. I also found sometimes my seizures would get slightly worse before getting better post increase. It also took a long time to see improvements. I think the docs often say a couple of weeks but I found it was more like a couple of months. Are you managing to get any sleep? This is a major trigger for me so husband was doing all night feeds! smile

Sorry, waffling on a bit here but found there didn't seem much advice when I was pregnant and after cos everyone's condition is quite different. How are you doing with your meds?

Kaz1402 Thu 30-Aug-07 09:46:29

My turn to waffle on a bit!! ... I had never suffered any seizures until I actually went into labour (in my sleep). Initially it was put down to hormonal/pregnancy related, but when I went on to suffer several more the GP and Neurologist were baffled. Had clear MRI and EEG scans, but they decided to treat me for epilepsy and put me onto Lamotrigine. I have continued to suffer (2 in one night, 3 in another), so upped meds to 100mg per day, but have still continued to have seizures - again, always when sleeping. Hence next step being a sleep clinic. Tiredness does seem to be a big trigger. I sleep OK but DH really does suffer as he is now such a light sleeper cos paranoid that I am going to have seizure. DS now 14 months.

flowerybeanbag Thu 30-Aug-07 09:54:44

Hello, yes me!
Diagnosed when 11, tonic clonic seizures, was on Epilim from age 14, when wanted to start a family went to see GP to ask if it was ok, or whether needed to change, he said no, just take bags of folic acid, got pregnant, baby had severe spina bifida, would not have survived full term so had to have a termination at 21 weeks.
Afer that I did my own research and discovered that apparently 'everyone knows' that women of childbearing age shouldn't be on Epilim angrysad.
I'm now on Lamotrigine, which is much better anyway, less tired, etc, and now have beautiful DS 3 months.
Stress, tiredness etc all triggers for me, but have only had seizures in recent past when I've missed tablets blush, so really I don't notice it.

waffle waffle!

elkiedee Thu 30-Aug-07 10:05:30

dp has epilepsy and we've just had a baby. Have been worried about the effects of sleep disturbance on his health but so far touch wood he's been ok.

MERLYPUSS Thu 30-Aug-07 19:18:15

I am on Epilim and phenytoin. I am 14wks pregnant with twins. I dont want to think about the abnormalities but had a scan yesterday at Kings and all ok so far. Keep your fingers crossed for us.
Were you ladies ok to b/feed or did they say no. Also natural or c-section ?

flowerybeanbag Fri 31-Aug-07 10:20:31

Oh merlypuss I don't want to scare you about my experience with Epilim. I have everything crossed for you I'm sure your twins will be fine, and it souds as though they are keeping an eye on you which is good.
Regards breastfeeding, when I was pregnant on Epilim I was told breastfeeding was fine, and having done my own research that advice is backed up by studies I've looked at.
I am now on Lamotrigine as I said, and haven't breastfed DS. Again I was advised it 'should be fine', but after past experiences naturally I wanted to do my own research as well. Studies and official advice I found indicated that Lamotrigine 'is probably ok' but as it is a fairly new drug, there isn't actually enough data yet to be sure. I didn't want to take the risk.
But as I say, with Epilim it shoud be fine. Don't know about phenytoin though. I will try and find the links to the information I found and link it for you.
I had a natural birth with DS.

flowerybeanbag Fri 31-Aug-07 10:30:59

this and
this were useful.

Just did a search for you and found this recommendation that you do not breastfeed on phenytoin.
I'd be inclined not to risk it to be honest, but have a chat with your consultant as well.

MERLYPUSS Fri 31-Aug-07 15:46:58

Thanks soooooo much FBB. Ans extra thanks for the good wishes. I thought the phenytoin was a no-no tbh and (pleae don't stone me for this) was kinda gonna use that as an excuse to bottle feed so that MIL and OH could help out. With 2 on the way I know I will hve my little legs run off and, with knowing that my seizures are triggered by lack of sleep, need as much kip as poss.
I would have like to b/feed or at least give it a go but have no fears about bottle feeding being second best as some people think. In my case it is bottle or nowt by the looks of it.
Back to Kings in Oct for cardiologist scan for twinnies (not my name, my neice's). Spine etc looked ok so hopefully .....

flowerybeanbag Sun 02-Sep-07 21:10:42

merly absolutely right decison, not worth the risk anyway. And just to say, DS is absolutely thriving on his formula, 'picture of health' as a doctor said the other day! Fingers crossed for your scan in October, let us know how it goes.

jaz2 Sun 02-Sep-07 21:32:34

I don't have epilepsy myself, but my brother does, so I was very interested in this thread.

I'm glad the drugs mentioned are generally working for people. I would like to offer one piece of advice tho - my brother was put on a "wonder drug" called Keppra (sp?) 20 months ago, and it had very awful side effects: dribbling, weight gain, lethargy, dreadful shaking limbs etc.

As he is autistic (fairly badly) the docs tried to say the problems were behavioural angry and nothing to do with Keppra, and I could find no mention of the side effects on the internet. Fortunately we got him off it last November and he immediately returned to (nearly) his old self.

I'm sure it doesn't affect everyone in this way, but I wouldn't want anyone to have to go through what my brother did.

newy Fri 07-Sep-07 10:46:05

Hi everyone! Haven't had time to log on due to DS teething and demanding constant attention - think he's gonna be a diva!
FBB so sorry to hear of your experience sad Don't know when this was, but I went to a doctor about 10 years ago and was told to 'just go for it' when asked about conceiving on epilim. Decided against trying for a baby at this time and was put on Lamotrigine when I went back to a different doctor a couple of years ago so not sure when the study came out. Sounds like your experience was fairly recent though.
RE b/f do NOT feel bad about this! I started ff when I came out of hospital but did express about a bottle a day for a few weeks although think you might be too busy merlypuss!
RE folic acid - I was told that all women with epilepsy should be on 5mg of folic acid when trying to conceive. This is far greater than the 400mcg usually in prenat vitamins and is only available on prescription. Not all GPs are aware of this.
Kaz, your dose of meds is still quite low so they could still increase by a fair bit if necessary. Let us know how your sleep study goes.
When I went into hospital post birth, they could only get hold of a neurologist by phone who recommended they increase my meds by quite a leap - more than my own consultant had done at a time so I ignored this and increasedthem by a smaller amount which my doctor was happy with. I had a natural birth but when pregnant my obstetrician did send me for a foetal heart scan at GOSH. Not entirely sure if this was necessary but all was fine. Good luck with the twinnie scan!
I think now the hormones have settled down I seem a lot better. On another note, I hired a doula to help me post birth so I could get some rest which was really useful.

Kaz1402 Fri 07-Sep-07 14:35:04

newy - sorry my mis-type, I'm actually on 200mg a day (100mg morning, and 100mg evening). Have had no probs since I upped the medication from 150mg, and slowly decreased the anti-depressants I was on as I was convinced the two medications were not compatible.

newy Fri 07-Sep-07 14:38:07

Hi, that's still fairly low. On discharge from hospital, I was also put on frusium for 10 days - absolutely pointless and irrelevant! Are you feeling ok coming off the ads?

Kaz1402 Fri 07-Sep-07 14:50:07

Hi - Stopped ads completely about 2 weeks ago and been feeling fine! Everyone comments that I seem back to my "old self", and I personally feel like I have more energy and motivation - which I spose is to be expected as ads are designed to space you out and make you all lethargic!

newy Fri 07-Sep-07 15:07:56

That's really good! smile When is your sleep study?

Kaz1402 Fri 07-Sep-07 15:22:07

Next week - 13th. I have to go to the hospital to get "wired up" etc. and then I can home to sleep. Have to go back in the morning so they can check the monitors and hopefully give me some results! hmm

newy Fri 07-Sep-07 16:16:23

Good luck - i remember my first eeg, I was picking cement out of my hair for days afterwards!

MERLYPUSS Mon 10-Sep-07 10:58:46

Just back from consultant appt. My epi meds are quite low according to latest blood so I have a neuro follow up that they will post to me. Am thinking they may up the drugs but dont wan tot go too high as they poisoned me last time I was high. Be guided by what they say I s'pose? Consultant obst did say he wondered if the amount of drugs I had in my blood atm were actually doing anything at all. shock

newy Thu 13-Sep-07 15:17:54

Do you mean you started getting side effects merlypuss? If so, maybe you are on the wrong meds for you. If they are so low as to not do anything and affect you badly when increased then perhaps you need a change to something else altogether. Also, I think some people have low blood meds because of the way they metabolize them - is this what the doctor means? (making the dose in the blood lower than expected for someone on that dose) or is it just low cos they have put you on a low dose. Sometimes they don't really explain things and assume you know what they are talking about. Don't be afraid to grill them - its your brain after all!wink

MERLYPUSS Fri 14-Sep-07 18:57:36

I am on Epilim and Phenytoin 100mg and 50mg per day. I was on a lot higher, just epilim, and was sailing along quite hapily and my levels went through the roof. They lowered it and I had a massive seizure, ventilated, the lot. So they combined me with the phenytoin at a higher dose. A few years ago they told me to lower each drug until I fitted so I know these are as low as I can get. I think the neuro said that he didnt want to break what was fixed then and kept me on that level as the consequences were getting worse and worse seizures each time. I know I cant have carbemazepine (sp) as it interferes with my white blood cell count, and thankfully I have been fit free for about 4 years now. Maybe I am one of these people that dont need a high level whilst pregnant as the levels have been low for over a month and it only too me a week to flip when I was lowering them myself?

gibberish Fri 14-Sep-07 19:02:42

Mine started when I was 7 after developing encephalitis during very bad case of the mumps but wasn't diagnosed until I was 25 - doctors insisted it was migraine up 'til then hmm Am on Lamictal and it is controlled thankfully. smile

newy Mon 17-Sep-07 12:29:19

Hello gibberish!
I saw tiny baby at weekend - she was 6lb 12oz (mine was 9.5 when born) very cute.
Kaz, are you around? How was the sleep study?

MERLYPUSS Wed 03-Oct-07 20:12:01

Had my final anomoly scan at Kings yesterday and all is good. Just waiting for them to be cooked now to see if all is well.

unfitmother Sat 02-Aug-08 18:20:48

Hi, I have DS 11 and DD 7 and am on Tegretol.
DS was a surprise, I went straight to GP but ne didn't tell me about the high dose folic acid I had to find it out for myself and go back 2 days later.

lou33 Sat 02-Aug-08 18:26:27

i am epileptic but seizure free now for a few years

flowery, dd1 was born with valproate syndrome for the same reasons

tried suing the health authority as they had hidden the truth and knew about the associations with epilim, but to no avail

she is ok now but it was a terribly stressful first year with all her problems

sorry to hear what you went through

unfitmother Sun 03-Aug-08 07:59:17

DS has developmental and behavioural problems and has recently been diagnosed with AS.
DS2 was still-born, pm showed a congenital mal-formation which may have been linked to my medication. sad
DD was planned, I took folic acid right from ttc, she's fine. I enrolled her in a 6 yr study looking at the effects of tegretol in pregnancy. Let's hope they can find something to help.

loudmouthmum Thu 21-Aug-08 03:05:29

Didn't realise how many other parents out there have epilepsy! I have had (mis-diagnosed) partial seizures since I was 14, was diagnosed at 22, 2 weeks after my youngest was born, as I went into Status. Currently I'm taking 1200mg/day Gabapentin, and 600mg/day epilim, the epilim is new as had bad side effects from topamax (now visually impaired as a result). My 10 year old also has epilepsy, she had a sleep deprived EEG this morning. Nice to see I'm not as alone as I thought!! smile

drainedbrain Sun 21-Sep-08 21:47:40

Hi unfitmother (am sure you dserve a nicer name!).

Sorry to hear about your DS2.

Can I ask did you take the same medication for all three pregnancies? I am getting ready for TTC but considering medication change from Keppra to Tegretol.

mammy2G Tue 14-Oct-08 22:42:22

Hi drainedbrained - just to say I have been epileptic since age 17 - took my normal tegretol retard (slo-release grin ) throughout pregnancy aswell as 5mg folic acid before conception till birth and no problems so far apart from a very big baby....9.9lb
Increased dosage during pregnancy as bit epi-ish but nothing major. More nocturnals now due to sleep deprivation wink Good luck!

mammy2G Tue 14-Oct-08 22:46:26

sorry meant to say increased dosage after birth....I was offered to increase it about 6 months in but I held off even tho it would probably have been fine (after month 3 they say ok to increase)As soon as he was out tho I put dosage up and have stayed that way since.

thegreatescape Sat 18-Oct-08 15:36:16

hello, haven't checked this thread for months as ds now 18months and have been kept busy! (originally posted as newy but have changed my nickname) I'm really sorry to hear some of your experiences, especially those which may have been prevented through healthcare professionals being better informed. I've found on the whole a lot of healthcare staff are 'flying by the seat of their pants' as far as epilepsy is concerned because it can be unpredictable and varies from person to person. Even the neurologists, sometimes. I say this as a healthcare professional myself.

With regards to Keppra, I was still having myoclonic jerks on Lamotrigine and then had a grand mal following a tummy bug so was changed to Keppra. This has suited me brilliantly. I have had no myoclonic jerks and feel 'normal'. (on Lamotrigine i could still 'feel' 'not right' sometimes and also had the myoclonic jerks). This is why meds are so difficult, but if something really doesn't suit, it might be worth swapping. I have found doctors are REALLY reluctant to change medications unless your head is falling off or something so you might have to ask.

Mammy2G, i wonder if the big baby thing was coincidence or if increased levels of folic acid increase birth weight. My ds was 9.5lb. i have now started taking it again in prep for (hopefully) number 2.

Would love to hear from those who wrote whilst expecting - have the twinnies arrived?

unfitmother Sat 18-Oct-08 15:41:39

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.

mammy2G Sun 19-Oct-08 22:41:26

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:
www.ncl.ac.uk/press.office/press.release/content.phtml?ref=1123237619

See it's not because I'm chubby after all!

thegreatescape Sun 19-Oct-08 23:41:41

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.

poissonfou Fri 31-Oct-08 21:33:14

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

MERLYPUSS Fri 31-Oct-08 22:18:35

HELOOOOOOOO !!!!
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.

thegreatescape Mon 03-Nov-08 11:55:04

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! grin

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!)

mammy2G Wed 05-Nov-08 12:07:28

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!

time4me Tue 09-Dec-08 20:05:13

wow stunning edible babies,gorgeous!

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.

CardyMow Mon 30-Nov-09 14:21:34

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.

MERLYPUSS Mon 21-Dec-09 21:27:25

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.

CardyMow Thu 31-Dec-09 01:55:22

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 nightsad) seizures lately.

CardyMow Thu 31-Dec-09 01:56:22

Oh and congrats on the (lovely) bubbies! grin

angie5959 Wed 08-Aug-12 14:47:17

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).

IwanttoflyonA380 Thu 09-Aug-12 09:58:15

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

sleepingplum Mon 17-Sep-12 10:29:11

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.

Iwasafairybutlostmywings Fri 04-Jan-13 09:51:25

hello
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

scissy Sat 05-Jan-13 11:52:53

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 sad) 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

Iwasafairybutlostmywings Sat 05-Jan-13 20:49:02

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!!

scissy Sun 06-Jan-13 16:12:05

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!

Highlander Thu 16-May-13 22:43:15

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?

Highlander Thu 16-May-13 22:43:52

Sorry to gatecrash, but really want to help this guy.

PolterGoose Fri 17-May-13 18:25:20

Highlander your friend has protection under the 2010 Equality Act Acas have produced a guide here

You'll get good advice on the Employment Issues board which is in the Work section.

scissy Mon 27-May-13 21:01:52

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.

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?

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