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This topic contains 8 replies, has 5 voices, and was last updated by  Janet Williams 3 years, 10 months ago.

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  • #215

    Emma Murphy
    Keymaster

    Epilim (Sodium Valproate) being a prescribed medication, you would think there would be very very clear warnings and advice to a lady thinking of starting a family. As we know this isnt the case.

    What advice was you given before you had your baby. Did GP/midwives.obstetric team warn you of the damaging side effects of Epilim??

    Would love to hear your views

    #216

    Hi I started taking Epilim in 1975 had fairly little advice save that of chances of spina bifida were increased and more scans were needed. No further advice of any sort was given. I realise I had been on Epilim for 13yrs when I became pregnant but have often wondered what was actually known then. Mt daughters are both affected in various ways and degrees and had to fight to actually get any where to get FACS acknowledged.

    #217

    Emma Murphy
    Keymaster

    It really is awful Barbara, to think a prescribed drug and no warnings given to ladies. That is the frustrating thing to, telling the Drs and the feeling that they don’t believe you when you tell them of the childrens symptoms.

    Did you receive your information pack??

    #218

    Janet Williams
    Participant

    Hi Everyone..! It seems there are so many of us mums who were not told about the outcomes of pregnancy while taking any anti-convulsant, not only Valproate. I have 2 sons both affected by Epilim who are now in their 20’s. Both of them had problems throughout their education and also health issues, yet, with all the information now available it seems that it was the Governments choice, not only the drug company’s, not to inform us.

    We’ve watch both our sons grow up suffering the frustrations of not being able to understand or remember, and the problems with their health, through all this they have both gone to achieve tremendously with the support given to them and we are so proud of them both.

    We just hope now that we can go on to achieve a better life for all the children affected no matter what their age or life they lead!

    #219

    Well said Janet! I also took more than valporate when I was pregnant.

    I have yet to receive my information pack Emma.

    #236

    Julie Richardson
    Participant

    I went to the Dr one year before I actually conceived asking for help as I was having trouble getting pregnant. Then when I became pregnant I went to the Dr at 6 weeks gone due to hyperemesis. I was admitted to hospital twice in my first trimester due to hyperemesis. On each occasion I was taking 1500mg of valproate. On each occasion not one of the Drs or other medical professionals discussed my medication at all, let alone suggested I should not be taking it during pregnancy. I don’t think there are enough words to express how I feel about this. In fact even when my daughter was born with hypotonia no one put two and two together. It was another 5 years of referrals from both myself and the nursery she attended to Opthalmology, SALT, SENCO, GP and Paediatricians before a diagnosis was tentatively given.

    #237

    Janet Williams
    Participant

    I thinks its disgusting the amount of information concerning Valproate, or any anti-convulsant drug in pregnancy which is supposedly available to the medical profession and the fact that the National Institute for Clinical Excellence (NICE) have guidelines in place yet the Dept of Health are not forced to implement them.

    There are so many women not receiving the correct information and so are being refused the chance to make an informed choice when it comes their pregnancy and their life.

    Lets hope things are about to change!!!!

    #238

    Catherine Cox
    Participant

    Hi Everyone!

    Two years before we started trying for a family – in 1997, I asked for an appointment with my neurologist. I told him I was concerned that I may have a seizure in pregnancy if I had morning sickness, so he changed my prescription of Epilim 500 mg twice a day to Epilim Chrono (delayed release) 1000 mg in the evening, so that it would stay in my blood stream if I was sick in the mornings. I asked him explicitly if it was safe to take in pregnancy and he told me it carried a slight risk of spina bifida and cleft palate, but assured me that I would be put onto a high dose of folic acid to counter this and I would be given a specialist scan at 20 weeks to make sure we knew. Two years later, I asked to see a specialist obstetrician to ask the same questions before we tried for a baby and he said the same thing. He asked me about my cycle and realised I was sub-fertile (we later found out this was because of the Epilim). We went straight into fertility treatment and after I was pregnant, we had the scan at 20 weeks and was told everything was clear. We were warned of nothing else. It was when Matthew was about 9 months old I started researching issues with development and when I told the GP of my fears, he had never heard of Fetal Valproate Syndrome.

    It amazes me that so many doctors – GPs and specialists – were not aware of the risk of Epilim in pregnancy, but our experiences since bear that out. The number of times Matthew was seen in A&E for breathing problems, or admitted because of other acute problems and when the doctors asked if he had any other problems, the mention of Fetal Valproate Syndrome immediately led to them making their excuses to leave the room while we knew they went to look it up. We could tell because they came straight back and asked what his particular presentation of the syndrome was.

    The general public naively think we must have known and ignored the warnings, but their dismissive attitude should not deter us. As mothers, we have the strength to move forward and tackle the government about this issue.

    Before Matthew was born, I never thought I’d have the courage to stand up to a patronising MPs, doctors, Ed Psychs, Inclusion Support teachers etc, but I have and we do it for the children who are innocent in all of this and deserve us to fight for them.

    Janet was the woman who made me believe that our children deserved better – thank you Janet!

    Catherine

    #241

    Janet Williams
    Participant

    It seems we’ve all through a extremely similar situation when it comes to receiving information about these medications during pregnancy… or not!! It’s my belief that all mums with Epilepsy or having children affected should be given the information they need to make that all important informed choice.

    When I started my charity work it was to help and support all the ladies who had been let down…. now its time for us all to help and support each other!!!

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