WHO ARE OACS?
OACS is a charity for those that have been touched by the effects of medication prescribed to women for Epilepsy, bi-polar disorder, migraines, pain management and depression, which was taken whilst pregnant O.A.C.S was established in January 1999 and became a registered Charity in 2006. Concerned that there needed to be a more interactive and proactive organisation for those families with OACS in 2014 the new board of trustees came together with a new and clear vision for the families with O.A.C.S. The onus now is upon the FACS family, to offer support, and advocacy to those families that need it.
The new board at OACS are all experienced in many aspects of F.A.C.S. We are willing to share our experiences of medical, educational and support services, as well as our experiences, as parents, that live with and manage this syndrome within their child. We are those parents that have gone before, preparing the way for those parents who are new to the world of the special needs child, with a little understood and complex disability. We also understand that it is not just the child that needs support, it is the mother living with her own disabilities trying to support the needs of her child. It is the father holding the space – Fetal Anti-Convulsant Syndrome is a conditon that effects the family unit.
All families are welcomed into the group with open arms, not only because we understand the problems your child may be experiencing but also because we understand the challenges experienced by the carer. Our private Facebook page has many friendly parents that are abundant in experience and generous with information and advice. The O.A.C.S Facebook page is a great place to go if you need support or have specific questions. We also have additional support available for those affected with ‘Big Sis’, father support, support for those that have lost their children, those who have adopted children with Fetal Anti-Convulsant Syndromes, and more. With the introduction of our new community groups the O.A.C.S team want to be here for those that need us.
Gaining a diagnosis may be the highest mountain of all for the carer to climb. F.A.C.S is a complex syndrome, presenting with global disabilities, some of which result in secondary conditions. The O.A.C.S team will support you in your quest for a diagnosis, and help you understand some of the challenges you are experiencing.
The team at O.A.C.S are here to offer advice, support and information, point you in the right direction should you need other support groups, social service benefits and special educational needs services. Our new Advocacy Services are now in place to support your needs.
The O.A.C.S team will also provide professionals with information and training in order to provide a greater understanding of this condition.
What Are The Fetal Anti-Convulsant Syndromes ?
Today many people have heard of Fetal Valproate Syndrome, due to the concerns regarding sodium valproate however this is just one of the 26 anti-epileptic drugs taken in the UK today. Some of these are also known to have the risk of affecting the fetus leaving the child disabled when the mother took anti-epileptic medication during pregnancy. It is a syndrome that effects the child on every level, the physical body, cognitive disabilities and mental health issues.
Fetal Anti-Convulsant Syndrome is caused when a mother uses anti-convulsant medication during pregnancy (also known as Anti-Epileptic Drugs, or AEDs: AEDs are not only used to treat epilepsy but are also used to treat pain, migraine, bi-polar and other mental health conditions).
One of the challenges that can occur for the pregnant mother with epilepsy is that some mothers tend to have more severe seizures during pregnancy. It is because of this that some doctors will up the dosage during the pregnancy which can make the fetus more susceptible to problems during pregnancy. The risk of disability varies according to the specific drug taken; however there are some patterns to be seen in them all. Fetal anti-convulsant syndrome(s) are/is not a ‘genetic’ condition in the usual sense but current opinion is that it is in the way these drugs are metabolised by some pregnant women, and/or their affected children, predisposes the unborn baby to damage. This variation in metabolism probably is genetically determined but there is, as yet, no test at present to determine which mothers, taking this medicine, is at risk. Seizures too will carry their own risks to the foetus, so these issues have to be weighed up before making any choices. Different drugs carry more risks of the mother conceiving a child with FACS than others. Sodium Valproate is regarded as by far the worst, with up to 35 – 40% likelihood of the child conceived being effected. For women who have had one child diagnosed with fetal anti-convulsant syndrome, the risk of having a second affected baby may be as high as 55%. The risk of anti-convulsant syndrome is believed to be higher when the mother takes more than one AED.
The first crucial period in pregnancy extends, from fertilization until the end of the first trimester. As it is during this period that fetus develops its main organs, and it is during this time, that abnormalities and malformations occur. Congenital malformations are abnormalities of development that are present at birth, however others may become apparent when an MRI is done, often due to a concern about that persons wellbeing.
It is well documented that anti-convulsant medication causes congenital abnormalities. Most statistics given today originate with the pregnancy and epilepsy register. The onus of this is upon major congenital abnormities during the first six weeks of the baby’s life, so statistics emerging from this can cause concern if they are used to determin the figures of those with fetal anti-convulsant syndrome. There is now a growing awareness of neurodevelopment disorders occurring at a much higher frequency. In sodium valproate is the best recorded drug; these have been given as high as 35 – 40%. Other drugs are also associated with neurodevelopmental delay, however the figures of these has yet to be determined. Just a few of the common challenges associated with FACS are: skeletal problems, heart defects, spinal bifida, kidney damage. Neurodevelopmental delay including learning difficulties, autism spectrum, language delay; also often overlooked are mental health problems. The disabilities presented by FACS often cause further health problems and can result in serious health conditions and on occasion even death. Itis for this reason that it recommended that a diagnosis is sought The mothers of these children are often disabled themselves. However not only are the mothers disabled carers, but the children are often overlooked in their role also as disabled young carers.
There is no real test for fetal anti convulsant syndrome, but it is possible to scan for malformations with, types 1 and II ultra-scan sound, Fetal anomaly screening, Fetoscopy, heart scans for the foetus other scans as well as blood tests. This can be specifically requested where a mother has been taking anti-epileptic drugs, especially if they have had other children with fetal anti convulsant syndrome. It is believed that taken folic acid during the first four months of pregnancy may have some preventative value. It is also recommended that the baby is given 1mg of vitamin K at birth. Those with dysmorphic features should be noted and be followed up by the new-born hearing screening programme.
The information provided by OACS is to empower so that those taking anti-convulsant medicines can make informed choices about the medication that is used during pregnancy.
It is important to speak to your doctor before choosing to stop or changing any medication