This topic contains 1 reply, has 2 voices, and was last updated by  Catherine Cox 4 years, 2 months ago.

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  • #230

    Emma Murphy
    Keymaster

    Through all my 5 pregnancies I was never ever told of the effects of Epilim and how the medicine I had been prescribed from my Dr/Consultant, would affect the babies. Although I knew deep down, the children were not progressing as well as they should be , I was constantly being reassured that everything was fine. My sister had been watching the news and on their was an appeal for any ladies taking Epilim (Sodium Valproate) to get in touch as it could have an effect on the growing foetus. When I watched this appeal, I knew there and then the babies had this condition. A feeling of relief that I wasnt imagining it and I wasnt going mad but also the realisation that “yes, something wasnt right”.
    Seeing that appeal has completely changed our lives, and I dread to think had we not seen it….. would we have ever known of the effects, because NO MEDICAL PROFFESIONAL had told me or even indicated that the babies were at risk.

    Are you in this position? When did you find out about the effects of Epilim? Were you offered Pre Conception Councilling?
    Are you reading this , currently on Epilim and been through pregnancy whilst still on the medication and thinking ” what effects?”
    Come and have a chat and get it all off your chest.
    Emma X X

    #240

    Catherine Cox
    Participant

    I found out when Matthew was 9 months old. I knew in my gut he wasn’t progressing in line with his peers. I also noticed on a photograph that the light didn’t shine on the same part of both eyes, leading me to think he had a sight problem.

    I then read an article on the BBC website about Dr Tim Betts and his research into Epilim and pregnancy. After a bit more searching I found some more articles and saw my GP about it. He said he’d never heard of it, but he said he believed it could be true. We were referred to a geneticist who diagnosed Matthew with FVS at 16 months old after lots of tests. He was also prescribed glasses at 16 months for extreme short sight, though he needed them before that – unfortunately the bridge on his nose was under developed and he couldn’t support them until them, even with a modified bridge strap and spring wires to fit round his ears. That was the beginning of a journey we never knew we’d have to take!

    The comparison of that with being pregnant (unplanned, on Keppra, which reversed my infertility that was induced by Epilim), with Charlotte is indescribable! Even though the data indicated that Keppra was safe, I was given every test known to man to make sure we knew as much as possible – blood tests, extra ultrasounds with more specialists in the room than you could fit in there, 4D scans, extra monitoring in labour, extra tests on Charlotte at birth – numerous hospital appointments for her eyes, joints, development etc – all offered just to make sure and all coming back negative.

    ……all this tells me that the information was not pushed to the front line in my area when I had Matthew and then when I had Charlotte, they were desperate to make sure they did everything they could.

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