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  • F.A.C.S.A Fetal Anti-Convulsant Syndrome Association

    Fetal Anti-Convulsant Syndrome

    Information for

    Education

    Teachers & Parents

  • Acknowledgments

    The Fetal Anti-Convulsant Syndrome Association would like to thanks all

    those who have took part in putting together this booklet.

    This includes the specialists from the Anti-Epileptic Drugs in Pregnancy

    (AEDiP) Maternal & Child Health Advisory Group, who all are recognised

    for their expertise in the subject of Fetal Anti-Convulsant Syndrome, with

    many published journal papers in this topic, and with Dr Bromley

    recognised for her expertise in FACS and Educational issues.

    With thanks also to FACSA Ambassador and Educational Specialist Sue

    Atkins. Sue has spent many years working within Education and with

    Special Needs children as well has working within TV giving advice and

    help to parents of SEN children.

    This book has been written by:

    Co-Founders of FACSA

    Janet Williams

    Emma Murphy

    Parental & Educational Officer of FACSA

    Catherine Cox

    Contact Details:

    FACSA & INFACT

    Tel: 01253 799161

    Email: janet.infact@btinternet.com

    Website: www.facsa.org.uk

    mailto:janet.infact@btinternet.com http://www.facsa.org.uk/

  • We have tried to write this booklet with visual prompts in mind which

    teachers or educational professionals would be able to spot if a working

    with a child affected by an Anti-Convulsant Medication.

    It is important to note that anti-convulsant medications these days are not

    only used or prescribed for Epilepsy but also for Bipolar, Depression,

    Migraine headaches and as a Pain Relief.

    Fetal Anti-Convulsant Syndrome is not only caused by one particular ant-

    convulsant medication, but an array of drugs, 10 of which may cause the

    condition to varying degrees.

  • For many years children have had problems within education due to the

    effects of Anti-Epilepsy Drugs (AED’s) taken by mother during pregnancy.

    These medications when used in pregnancy, reported in recent research

    are known to cause cognitive and neurodevelopmental problems including

    Autistic Spectrum Disorders.

    The latest medical journal paper was released in the Journal of Neurology,

    Neurosurgery & Psychiatry in January 2013. In this definitive paper Dr

    Rebecca Bromley et al stated that:

    ‘the increased likelihood of neurodevelopmental disorders should be

    communicated to women for whom Sodium Valproate VPA is a treatment

    option.’

    It goes onto say:

    ‘ Women should be provided with as much information as possible to enable

    them to make an informed decision’

    ‘Evidence suggests that the neuropathology of Autistic Spectrum Disorder

    (ASD) develops early in gestation……… Children exposed to Anti-Epilepsy

    Drugs (AED’s) especially Valproic Acid (VPA) should be monitored closely

    during early childhood to allow for early intervention, diagnosis and

    support…..’

    Currently there are 10 different anti-epilepsy drugs (AED’s) on the market

    which are prescribed regularly. Out of those 10 there are 3 main

    medications which affect the fetus during pregnancy, these are:

    Phenytoin (1938) Fetal Hydantoin Syndrome

    Carbamazepine (1963) Fetal Carbamazepine Syndrome

    Sodium Valproate (1973) Fetal Valproate Syndrome

    Others may be:

    Lamotrigine (1991)

    Topiramate (1995)

  • However, of late there has been an addition to that list of another

    medication which is affecting the fetus similarly but not to the drastic affect

    as Valproate, although we are now aware that this newer drug is becoming

    drug of choice amongst specialist. These medications are Lamotrogine and

    Topiramate.

    Any woman taking these medications may find themselves in a catch 22

    situation, especially if she is being prescribed the drug for Epilepsy, as in

    some cases it may well be the only way of controlling her seizures.

    It is over the past 5 years that these drugs have also started to be

    prescribed for other conditions, these are Bipolar/Depression, Migraine

    headaches, Neuralgia and as a pain relief.

    As an organisation FACSA are here to help and support the children

    affected by an anti-convulsant medication during pregnancy, but also to

    ensure that professionals involved with their health and educational issues

    fully understand Fetal Anti-Convulsant Syndrome, irrelevant of which anti-

    convulsant medication may have caused their problems.

    We are aware that the majority of children who have been affected by their

    mother’s medication during pregnancy may not have a diagnosis of a Fetal

    Anti-Convulsant Syndrome eg: Fetal Valproate Syndrome, Fetal

    Carbamazepine Syndrome or Fetal Hydantoin Syndrome but may have a

    diagnosis of an Autistic Spectrum Disorder (ASD)

    As on numerous occasions, we find that due to facial features, these

    children may look similar however their individual educational difficulties

    are unique to them.

    Many FACS children do share certain behavioural characteristics, for

    example hands to ears due to noise intolerance, not understanding others

    facial expressions or body language, frustration, impulsitivity and

    obsession, as well as physical characteristics such as curved toes,

    prominent finger pads, small fingernails and facial features and so it is

    important to individualise and work separately with each child’s demands.

  • Research & Information

    Through the latest research published in January 2013, it is apparent that

    an ASD may come secondary to a Fetal Anti-Convulsant Syndrome,

    however school would have no record of the mother taking this medication

    unless she offers that information herself.

    In these circumstances we understand the complex situation for any child

    with this condition and also that of the teachers and school involved with

    the child’s education.

    It is because of this we are currently working with the Medicines and

    Healthcare Regulatory Agency (MHRA) and the National Institute for

    Clinical Excellence (NICE) in order to ensure that every person who

    receives anti-convulsant medications are made fully aware of the

    possibilities is these medications are taken by a women during pregnancy.

    Over the years, from as early as 1968 there have been medical reports in

    the journals explaining the findings of children affected by anti-convulsant

    medications. Please see at the back of this booklet for a list of those journal

    papers if you wish to take a look at the reports yourself.

    The most significant over the years has been by Prof Donnia and Dr

    Clayton-Smith in 1995 ‘Fetal Valproate Syndrome’ when it was confirmed

    there was such a condition. To date the most significant of all has to be the

    paper released in January 2013 which was a prospective study completed

    over 6 yrs and confirmed the connection of Autistic Spectrum Disorders

    and Fetal Anti-Convulsant Syndrome.

    Since 1980, starting with the Dalens report, there have been hundreds of

    journal papers discussing the findings of anti-convulsant medications taken

    in pregnancy. It has been confirmed the Valproate (Epilim) is the most

    toxic to use during pregnancy and causes more significant problems for the

    child. Unfortunately during the 1980’s and 90’s this was the drug of choice

    for Epilepsy and so the figures for children affected by this drug alone may

    be as high as 20,000 with 40% having neurodevelopmental disorders.

  • Learning and Development

    Whilst the medical journals and the UK Pregnancy Register report on the

    major malformations, new information now points towards the

    learning/cognitive and developmental problems the child struggles with.

    Since working within Fetal Anti-Convulsant Syndrome organisations over

    the past 20 years, and coming into contact with over almost 1000 children,

    we have seen a full range of developmental problems they portray, all of

    which are to varying degrees.

    Published researched demonstrates that those who have been exposed to,

    in particular, Sodium Valproate (Epilim) during pregnancy are at an

    increased risk of having difficulties in one or more areas of cognitive

    functioning with the most common difficulties being:

     Language Difficulties (expressive and comprehension)

     Attention Difficulties

     Working Memory Difficulties

     Memory for Verbal Information (things told)

     Poorer levels of Intellectual Ability (likely due to other cognitive

    difficulties)

     Difficulty writing for long periods due to joint laxity

     Social Difficulties.

    It is important to remember that as with all children, each child with Fetal

    Valproate Syndrome (FVS) is unique and may not display weakness in all

    areas of the