Microsoft word - facs parents guide.docx
In association with the Independent Fetal Anti-Convulsant Trust
Anti-Convulsant drugs (AED’s) have been prescribed for Epilepsy since 1912, when the first drug, Phenobarbitone was introduced. There are 3 main medications known to affect the fetus during pregnancy which are Phenytoin (Epanutin) (1938), Carbamazepine (Tegretol) (1963) and Sodium Valproate (Eplim) (1973). These three medications have been shown in some cases to cause a constellation of symptoms which go together and are labeled a fetal anticonvulsant syndrome (FACS). Research has demonstrated that the chances of a fetus being affected increases as the medication dose gets higher. There are a number of other anticonvulsant medications (e.g. topiramate (Topamax), lamotrigine (Lamictal), zonisamide (Zonegran), levetiracetam (Keppra) and oxcarbazepine (Trileptal)) which researchers are currently investigating to ensure that they do not present an increased risk of developmental alterations in the fetus. Exposure in the womb to sodium valproate, carbamazepine or phenytoin are linked to an increased risk of developmental difficulties (physical and in terms of learning ability), however not every child is affected. If a child has a diagnosis of FACS this means that other causes to their difficulties have been ruled out by a Doctor. Anticonvulsant drugs are typically used to treat seizures, however they are also used to treat certain mental health difficulties, pain and migraine conditions. The FACS Syndrome Association (FSA) & the Independent Fetal Anti-Convulsant Trust (IN- FACT) were founded in Novemeber 2012 by Janet Williams and Emma Murphy in order to help and support families affected by the condition. Both have experience within the subject of Fetal Anti-Convulsant Syndrome, having children affected and also working for other FACS charities in the past, with Janet Williams working for 17 years on this topic. FACS can affect a child to varying degrees, ranging from Dysmorphic (unusual) facial features, Cognitive impairments, Spina Bifida, Cleft Lip & Palate etc.
The problems list can be very extensive in some circumstances.
Fetal Valproate Syndrome
This syndrome can occur when the fetus is exposed to Sodium Valproate
Characteristic Facial features
Developmental Delay (late walking & talking)
Gross & Fine Motor control difficulties
Speech and Language problems
Poor muscle tone ( Hypotonia)
Autistic Spectrum Disorders
Hypospadia (only in boys)
Limb & Heart Defects
Spina Bifida (failure of the spina column to close properly)
Cognitive difficulties such as: Attention difficulties, Memory problems, Lower
IQ and Speech & Language problems.
Difficulties with Social Skills can also occur within people with this condition. Fetal Carbamazepine Syndrome
Characteristic Facial Features
Attention & Memory Difficulties Fetal Hydantoin (Phenytoin) Syndrome
Cleft Lip and/or Palate Small size at birth Developmental Delay Lower IQ Not all children whose mothers have taken an anti-epilepsy drug (AED) during pregnancy will be affected. You must never stop taking your medication without medical advice!
New & Recent Research
Over the years research attention into the health and development of infants exposed to anti-convulsant medications has increased. Research into the risks associated with anticonvulsant medications takes a lot of time and resources and can only be done if women who take these medications offer to help researchers. Recent research has highlighted that the dose of the medication taken is a key factor in child health. Recently, the risks of the child’s cognitive functioning has also been more rigorously investigated and the risks, particularly for children exposed to sodium valproate (Epilim) have been highlighted. On Thursday 31st January 2013 a medical journal paper named ‘The Prevalence of Neurodevelopmental Disorder in Children Prenatally exposed to Antiepileptic Drugs’ was released in the journal of Neurology, Neurosurgery & Psychiatry. This is a prospective study which has followed children, whose mother took Sodium Valproate (Epilim) , for the first 6 years of their life and has shown that the drug Sodium Valproate does cause Neurodevelopmental/ cognitive impairments to the fetus when taken by mother during pregnancy and a 6 or 10 times increased prevalence of Neurodevelopmental disorders is reported for children with a history of VPA exposure respectively for monotherapy and polytherapy exposure. Since the drug Sodium Valproate was licenced for use in the UK in 1973, research states that as many as 48,000 children have been exposed to it, and that as many as 20,000 children have been affected by it. Of course other ant- convulsants can cause Fetal Anti-Convulsant Syndrome, however the extent of the damages caused by Valproate makes it the worst AED to use during pregnancy for the fetus, and it is important for any woman, with the support of her health care professional to be able to make that informed choice before becoming pregnant. Numerous medical papers have been published in the past giving concerns to Valproate during pregnancy with a definitive paper issued in 1995 stating there was such a thing as Fetal Valporate Syndrome. We now know that Valproate and other AED’s are used for other conditions such as Mental Health conditions like Bipolar, Migraine Headaches, Trigeminal Neuralgia and as a pain relief.
Meet the Team
The FACS Syndrome Association (FSA) are working to help and support
families with affected children and have a Parental & Educational Officer on
board to offer help and advice in situations with school etc.
It is our intention to support families who have children affected by any anti-
convulsant medication, not just Valproate, as we understand the implications
FACS can have on family life.
Each board member has children affected, all to varying degrees and at
different stages in life.
While Janet Williams has 2 sons affected by Valproate at the ages of 21 and
23 yrs old, Emma Murphy and Catherine Cox have children of school age
and are still experiencing the usual problems given by education and health
issues. Janet Williams
With both our sons being in their 20’s we have already experienced the
problems the majority of affected families are going through. Each of our
sons has a diagnosis of Fetal Valproate Syndrome but they also have a
diagnosis of an Autistic Spectrum Disorder which impacts on their everyday
Their experiences have been overwhelming to watch, however with the
correct support in place they have the capabilities to reach their goals albeit
with the need for a little extra time to get there.
We love both the boys and, as any mother would tell you, wouldn’t have
them any other way, it is important to remember though that mum and dad
are not going to be around forever and so preparing them for their future
without you is imperative. Emma Murphy
All my 5 children have been affected by the Valproate I took during pregnancy. At no point during any of my pregnancies did any healthcare professional explain to me the dangers of Valproate in pregnancy even though I did query at the time the development of my children.
Even though it is imperative that you do not stop your medication, you must
first and foremost arrange an appointment with your GP to discuss your
medication and the fact that you may be pregnant or want to try for a baby.
As a parent you must believe in yourself, a lot of mothers go through the guilt
trip which certainly destroys you as a person, but Its important for any mum
to remember that you’re not to blame yourself especially if you weren’t
explained of the dangers. Catherine Cox
I’m mother to Matthew, who has Fetal Valproate Syndrome and Charlotte, who doesn’t. I am experienced in taking to local authority support services and in initiating and successfully navigating the Statementing process from start to finish. I am also proficient in negotiating with healthcare professionals to obtain help and diagnosis for Matthew. Obtaining what you need for your child is not always an easy or straight forward process, but the confidence you gain and the improvements for your child are worth it. Remember that what has happened is not your fault (even though you might feel that it is) and that professionals and corporate bodies should have a responsibility to help your child. We want all children affected by FACS to have the help and care that is due to them.
For more information please contact
FACS Syndrome Association (FSA)
Heather Brae School Lane
Preston PR3 6AA
Tel. 01253 799161
Email. [email protected]
/ [email protected]
Tweet. @emma4facs Independent Fetal Anti-Convulsant Trust (IN-FACT)
Janet Williams / Emma Murphy
Tel. 01253 799161
Email. [email protected]
/ [email protected]
Please note that both the FSA and IN-FACT are entwined and work together
to ensure that parents receive the best of both worlds while trying to avoid
duplication of registering with both parties so your details are shared but will
be kept private and confidential.
We, at IN-FACT, hope that each parent/family contacting the FSA for advice
will also feel the long lasting financial benefits which the trust are working so
hard to achieve. The only way this is possible is by completing the contact
forms you should have received with this booklet and returning them as soon
as possible. The forms will then be entered into a file with your name on it so
as you can be contacted by IN-FACT when the time comes.
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