hi folks please help, i am in my mid 20's, jme, 1000mg of epilim/depakote/sod valproate(same drug) 2 x 500mg per day well controlled, tried lamictal did not work, nor tegretol. want to get pregnant in 2/3 yrs time, any woman had safe births, any probs, am i on a high dose etc please help.........
I understand where you are at exactly. I have tried the 'safe' ones and have reacted badly to them so am back on Epilim. I deparately want to have children now but am so unsure about going down that path on this medication (as is my partner). I really struggle with the potential consequences - I am sure you understand. I would also love some input from others who have been in this situation.
I am currently on 1200mg of Epilium and 150mg of Lamictal. I have been on Epilium since I was 15 months old. Because of the long term use of it I have now got buckleys of ever getting pregnant. On top of that my neuro says the risks to the fetus is extremly high if you take Epilium while pregnant. The risks go from still born/misscarriage, sever physical deformaties, plenty of neurological problems and so on. The risk rate is almost a guarentee side effect. If you wish to get pregnant it is recommended that you stay of the Epilium for 6-8 months before concieving giving it a chance to get out your system and greatly lowers the risk to the baby. I not up to date on many of the other meds but don't consider pregnancy while on Epilium.
Hope this helps Lori
I don't suffer from Epilepsy, I just live with it
thanks ladies! appreciate it, because u have been on epilim so long has that effected your fertility? i have been on it almost 9 years, i really don't know what to do, it sounds awful but i would not be able to see my child have to live with such disabilities/defects, it is not a proper life, people have been telling me to adopt, but i want my own, 2 at least. i know it is more dangerous to be on more than one drug, so at least i am on just one. ps do u get regular checks on your blood levels re medication and bone density scans? in the US they seem to get this, what is going on east of the pond???? please more stories ladies on your pregnancy with epilim, ps i am on epilim chrono(slow release) don't know if that is worse!!!! probably xx
I went to see a new neuro yesterday and found out some VERY interesting new info on Depakote/Epilim. Recent studies in Australia and Europe have indicated that there is a threshold level of this drug, below which the birth defects associated seem to drop off dramatically. This level is 1100mg per day. The findings were published in the Journal of Neuroscience a few months ago (not sure which exactly) but basically, any of our doctors could/should have access to this information and be able to advise us accordingly.
Something else he expained to me is that this med should work based on the rough idea of 10-15mg per kg of body weight. For me (I weigh 53kg) that is 530 - 795mg per day. I am currently on 800mg per day so we have decided to drop it to 600mg to see how I go on that dosage. The great news about that is it puts me well below the threshold level with a lot of room to move.
In a couple of months I am going to see the neuro who has conducted this study in Australia (I live in Brisbane, Australia) so I will let you all know the outcome of that appointment.
Hi, I just wanted to say that I took epilim (3000mg/day) with my son as well as lamictal and klonopin. I took 10mg folic acid the whole time and he turned out fine. I do want to say that since I started taking epilim, it reallly messed my body up. My periods stopped and I got PCOS. I wasn't ovulating and my periods were so messed up. It took 2 years to finally get my body back to a normal state and I'm finally pregnant with our second now. I'm on different drugs this time as we want more kids and don't want to have to wait that long again in between. I know it doesn't happen to everyone but if you do a search on epilepsy and PCOS or PCOS and epilim/depakote, etc, you can really find some interesting information. I don't mean to scare you, but I had no idea when I started taking it and I wished I had. I sincerely wish you all the best of luck in ttc. No matter what the drug, just make sure you take plenty of folic acid months in advance if possible. Most doctors don't agree with that much, but the research shows it and it worked for my son so I say do what works.
New member. Recently been to the specialist ref Foetal Valporate syndrome in children. My 8 year old son suffers from this. He has low muscle tone, impaired fine motor skills and is socially and emotionally behind his peers by about 2 years. He has recently been diagnosed as having autistic spectrum disorder. My wife took 1.6mg og epilim and .2mg of tegretol daily when he was born.
I also have a 4 year old daughter, when she was born my wife was taking 1.4mg and .2mg od the same drugs together with 4x the recommended dose of folic acid. My daughter has none of the problems that my son has.
Unfortunatly 2 years ago my wife was diagnosed with advanced breast cancer metacised to her back, she died in July 2004.
Thanks for your kind thoughts. I hope everything goes well with your specialist. I would not swap my children for anything, we were fully aware of the risks of epilim with our 2nd. I posted because of the recent publicity in the UK between folic acid and breast cancer.
Hi Julie, I'm on same dose as u but don't take it all the time! on tegretol yrs ago, didn't like it! epilim makes my hair go curly, really annoying! unlike u, I've never wanted kids BUT u need to be careful on epilim as it may cause your kid to be born with spina bifida, not good! pregnancy needs to be planned with regards to epilim & reduced or whatever to reduce risks. take heed, docs don't always tell us probs with meds. later Claire