This topic contains 6 replies, has 3 voices, and was last updated by  Emma Murphy 3 years, 9 months ago.

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  • #208

    Emma Murphy
    Keymaster

    Hi all

    This forum has been set up for mums/dads and families to network and meet other parents whose children have been affected by Anti Convulsant Drugs ie Epilim.

    Having a child with a disability is very tough mentally and physically and can sometimes leave parents feeling isolated. To all our parents, you are not alone, we too have children affected and are always here for help and advice.

    Feel free to get things off your chest, ask questions….any medical questions with regards to your child will be answered by our medical team, and will always get back to you ASAP.

    Emma x x

    #211

    Catherine Cox
    Participant

    Hi Emma and Janet,

    it’s me, Catherine!

    I first rang Janet in 2002 and we’ve been firm friends ever since. Our son Matthew was born with FACS but we later had a daughter who was born without problems because I was taking Levetiracetam, which I’m currently still on.

    Matthew has a statement of educational need and we have been to Oxford, London (GOSH) and Manchester to see specialists for his health needs.

    Any parent needing advice, I’m more than happy to listen to, as I’m known as ‘the reasonable bitch’ because I normally make doctors and the local authority feel like they have to do what I request because I and firm but polite and make them sound unreasonable if they turn down a request.

    To all you mothers – stay strong for your innocent affected children – you are already amazing and together we will be even more amazing when we succeed.

    Love to Janet and Emma

    Catherine
    XXXX

    #212

    Margot Carter
    Participant

    Hi,
    My name is Margot. I have 3 children, all three were conceived while I was taking epilim and the elder two I was taking high dose epilim and have fetal valporate syndrome. My eldest is very hypermobile, has a very high palate and asperger’s syndrome. My middle child, who is 13, is very poorly and we are uncovering more over time the damage that was caused to her by this med. She has been seen, and still is seen regularly at GOSH, she goes to the JR in Oxford, also has been seen at Manchester, Kings did her early scans to determine the state of her spinal cord. She has regular appointments locally (we live in Cornwall). Naomi’s diagnosis list seems to grow constantly and the metabolic team at GOSH/Manchester are investigating whether fetal exposure to epilim predisposed her to Fabry disease which sadly will be the disease that will take her from me far too young. That disease is an orphan disease which normally runs in families and is very unusual to have a case where noone else has it…we have all been tested only Naomi has it, not only that but she has an exceptionally rare form of it which happens to be particularly aggresive. She has various other DnA mutations. She is also deaf, has cortical visual impariment, chiari malformation, hydromyelia, spina bifida (should be occulta but the chiari and symptoms mean that they now just say spina bifida) hypermobility +++ swan neck fingers and weird thumbs, and severe tinnitis, vertigo and sudden onset stress incontinence.
    My youngest also has some health issues but whether they can be laid at the door of epilim I have not ever considered.
    With Naomi on regular pain relief and fortnightly enzyme infusions we just wonder if her list of diagnosis will ever reach an end and they will find treatments that will actually help her. We spend an ever increasing amount of time in hospital.
    I am so pleased to have found here.
    Margot.

    #213

    Emma Murphy
    Keymaster

    Hi Margot,

    Im so happy you have got in touch. It really is great to hear we are helping parents whose children have been affected by Epilim. Whenever you need to talk , get in touch post a comment ……we will always reply.

    Its so bad that this medicine has had devastating effects on our poor babies. I was never ever warned of the effects of Epilim and have had 5 children affecting them all like yours to various degrees. Its heartbreaking, watching the pain/issues they go threw. As a family to life is hard. Your 3 little ones are lucky to have a fantastic mum who is dedicated to them. Have you thought about getting your youngest child seen by a Geneticist?

    Our parent support group The FACS Syndrome Association is on Facebook, you can contact threw their to. If you need information we can post some out to you, as we have new booklets that have arrived

    #242

    Catherine Cox
    Participant

    Margot,

    You sound amazingly strong and you have needed to be for your children.

    I hope that finding FACSA can help you with questions and concerns, as well as providing you with support through difficult times.

    Catherine

    #381

    Margot Carter
    Participant

    Hi, We are seeing Dr Turnpenny in August. He was the first Dr not to lie to us and deny the existence of FVS. Alfie, our youngest will be going with us to the appointment.
    Sadly I have a friend who has only just been told that the condition doesn’t exist and therefore her little one has no need for a referral to a geneticist.

    #395

    Emma Murphy
    Keymaster

    Hi Margot,
    Dr Turnpenny is a fabulous Geneticist, one of the best in the country. Very unprofessional and unfortunate that your friend has been told this as FACS is a condition. It has always been classed as a rare condition however the figures we have from our medical team proove otherwise. If your friend would like some information to bring to her GP, we can send some out to her, its not a problem, thats what we are here for x x

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