If you have generalised epilepsy or seizures associated with impaired consciousness you will be concerned about maintaining safety during a seizure, especially when alone. It is important to reduce the risk of harm to you and baby when getting up in the night, showering and bathing and on trips out. The following advice is to empower you to feel confident and independent:
The exposure to AEDs during pregnancy can be associated with an increased risk of congenital malformations and delay in baby reaching milestones, especially when sodium valproate has been prescribed. If your baby has any adverse drug reaction or is born with any malformation, please notify the Medicines & Healthcare Products Regulatory Agency (MHRA) via the Yellow Card Scheme. If you have concerns about baby’s development or behaviour, discuss this with your health visitor and GP.
There should be proactive approach to support with individual assessment and referral if necessary to expert support services such as: paediatric, geneticist, psychotherapist, physiotherapy, play therapy (portage) and speech and language support. If your child has hypermobility/balance problems the physiotherapist may recommend supportive footwear to improve stability.
Portage A home visiting educational service for pre-school children with additional support needs and their families.
Organisation for Anti-Convulsant Syndrome: OACS
INFACT National Valproate Campaign
It is so important to talk to your children about epilepsy, even at a really young age. This not only helps them understand what is happening if you were to have a seizure, it also enables you to teach your children what to do and how to help. Many extremely young children have been able to contact an emergency number for help if a family member has had a seizure, through pressing one button on the phone; it is preferable for your child to use a home phone in an emergency as your name and address can immediately be located. If you only have a mobile, ensure your child knows which button to press. As the operator will ask your child for their name and address (including postcode), it is important to start teaching them this as soon as they can talk. For further advice to teach your child about calling 999, click on: netmums. Showing your children how to place someone into the recovery position and contacting 999 has also been incorporated into the school curriculum. Epilepsy Action has also produced these great stories to share with children: Mum has epilepsy Dad has epilepsy The stories can be modified for young children by using soft toys/dolls for role play.
Many parents with epilepsy are understandably concerned about their children inheriting this condition. The risk for most people is low, but this does depend on whether or not your type of epilepsy is related to inheritance. Please click onto this link for excellent information: Epilepsy Action Inheritance. Also feel you can discuss this with your doctor or epilepsy specialist.
Women with epilepsy can be at particular risk of depression and other mental health issues. This can be impacted due to the vulnerability of mental health in pregnancy and for the year following birth. If you develop any symptoms including unprovoked crying, low mood, lack of motivation and appetite, excessive sleeping, not wanting to dress, anxieties, fears, phobias or false beliefs, seek urgent advice about self help and treatment from your midwife, health visitor or GP. Please click on the links listed below for further information.
MIND support/ types mental health problems & post-natal depression Telephone: 0300 123 3393
Royal College of Psychiatry: Mental Health Problems in Pregnancy and Beyond
NHS Choices: Moodzone: Self help toolkit for Stress, Anxiety & Depression
PANDAS Pre & Postnatal Depression Advice & Support Website Helpline 0843 28 98 401:9am-8pm, all year
PND and me www.pndandme.co.uk postnatal depression peer support
National Childbirth Trust www.nct.org.uk Tel: 0300 3300 770
Cry-sis-self help & support for families with excessive crying & sleess babies:Website (daily 9am-10pm)
Samaritans: Freephone 116 123
The postnatal period is pivotal for reassessment of your epilepsy and AEDs if you have not previously been seen by an epilepsy specialist, had uncontrolled seizures in pregnancy or if prescribed sodium valproate. Please ask your GP for a referral and continue to use effective contraception and take folic acid as prescribed, if there is risk of pregnancy. Click Preconception for further information.
Enzyme-inducing AEDs: Phenobarbital, phenytoin, primidone, carbamazepine, oxcarbazepine, eslicarbazepine, rufinamide, topiramate and perampanel affect the absorption of the hormonal methods of contraception 1-3. Methods of contraception that are not affected by these AEDs include: male or female condoms, Depo-Provera (the injectable contraceptive), Diaphragms and Caps with spermicide, the intra-uterine device (IUD) and the intra-uterine system (Mirena).
Check to see if your contraception interacts with your treatment, click: Medscape interaction checker
Emergency contraception can be affected by the drugs listed above: please click on MHRA emergency contraception for further information.
Long term reversible contraception patient leaflet, click FPA guide
Lamotrigine is not an enzyme-inducing AED but lamotrigine levels can be reduced by 40-60% if co-prescribed the combined oral contraceptive (COC) which may result in reduced seizure control4. If you wish to commence the COC, discuss this with your GP or epilepsy specialist in the event the lamotrigine dosage needs adjusting.
Sexual Health clinic or Information Line: Tel: 0300 123 7123, Monday to Friday 9am - 8pm and weekends 11am-4pm or to find a clinic: Family Planning Association
Prescriber information about antiepileptic drug interactions with hormonal contraception Click: News update January 2017 on professional page
Contraception: A guide for people with learning disability FPA Resources for people with learning disabilities
Author: Kim Morley (2018) Caring for baby and you following childbirth. Available from: www.womenwithepilepsy.co.uk