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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.
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.
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
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.
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.
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!!
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.
Hi drainedbrained - just to say I have been epileptic since age 17 - took my normal tegretol retard (slo-release ) 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 Good luck!
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.
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?
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.
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!
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.
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
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.
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!)
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!
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.
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.
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.
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.
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).
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
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.
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
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