Epilepsy, Medications & Breastfeeding
February 14th International Epilepsy Awareness Day; to mark the day I want to acknowledge some of the difficulties that women with epilepsy face in terms of their fears and anxieties with regard to pregnancy and more in particular with regard to breastfeeding/chest feeding.
Epilepsy is as diverse in its nature as it is in the treatments used to control it and in the lived experiences of people who have epilepsy. For most people who are planning to or have become pregnant, there is joy, expectation, excitement and trepidation. For those who have epilepsy, those feelings are often compounded with unique fears and anxiety relating to their epilepsy; the impact of epilepsy and medication on their developing baby, caring for and feeding their baby
In this post I would like to address some misperceptions around breastfeeding and epilepsy. I want this post to speak to those who fear that their own milk may harm their baby and to see that breastmilk is almost always the optimal and most natural first food for babies even if you do have epilepsy. I am not an expert in epilepsy but I am in lactation and I have read guidelines and offer links to guidelines and research for further reading. Always collaborate with your Neurologist and their team. This post will offer you tips and some experience of women with epilepsy that I spoke to in writing this post for International Epilepsy Awareness day.
It is also important to know that most women with will have normal pregnancies and there will be normal growth and development of their baby during their pregnancy. WWE should be reassured that most will have an uncomplicated labour and delivery. RCOG
Let’s talk breastmilk.
Human milk, “tailor made for human babies”, it is the best and most natural food for brain development and growth. It is a dynamic living substance that has a strong immune and anti-inflammatory response. It has the right number of sugars, fats and protein, it is packed with specialist cells, enzymes, growth factors white cells, stem cells, cancer killing cells, numerous hormones with very specific functions. It reduces infection, hospitalisations, sudden infant death SID, reduces risk of diabetes in children and in women, can reduce the risk of cancer and diabetes and heart disease. The milk changes according to the baby’s needs, so the milk of a new born is different from the milk of a two-week-old or 2-month-old, from a 6-month-old to an older baby and toddler.
“Breastmilk makes the world healthier, smarter, and more equal: these are the conclusions of a new Lancet series on breastfeeding”. Lancet editorial
It is no wonder that the World Health Organisation WHO and most government agencies including our own Health Service Executive (HSE) encourage parents to breastfeed exclusively for the first six months of a baby’s life and continue along with solid food until at least two years.
You may also be surprised to know that almost all professional neurology organisations across the world recommend that women with epilepsy should be encouraged to breastfeed if they so wish. In Ireland there are “Irish clinical guidelines for women with epilepsy” and one its key recommendation is that “women can breastfeed if they wish to do so”.
“All women and girls with epilepsy should be encouraged to breastfeed, except in very rare circumstances. Breastfeeding for most women and girls taking AEDs is generally safe and should be encouraged” NICE Pathways
Royal College of Obstetricians and Gynaecologists have this recommendation in their guideline:
“WWE who are taking AEDs in pregnancy should be encouraged to breastfeed”.
Medication and Breastfeeding
Many parents are concerned about the safety of breastfeeding while taking AEDs. The exposure of the foetus to AEDs does increase the risk of congenital malformation, growth and neurodevelopmental delay even though this risk is 2 to 3 per 100 , the lowest risk to women with epilepsy is also 2 to 3 per 100 in women but may rise to13 per 100 depending on the type of medication and the amount of medication used. Your baby is exposed to a lot more of AED in their pregnancy than through breastmilk. Even though most AED s will transfer into the breastmilk most AED s are known to be generally safe.
There are many factors involved in this risk. Some women with epilepsy will have a lower risk than others depending on the medications, how many types of medications they take and how well controlled their epilepsy is. Some Medications are considered a lot less safe and carry higher risk such as Valproic acid. Veiby G.
This is what the RCOG green top guideline 2016 had to say “Based on current evidence, mothers should be informed that the risk of adverse cognitive outcomes is not increased in children exposed to AEDs through breast milk”
Good news is that a study in the US on drug exposure in infants of breastfeeding mothers with epilepsy showed that the drug concentrations in blood samples of infants who were breastfed were substantially lower than in their mother’s blood. The study, acknowledging “the well-known benefits of breastfeeding and the prior studies demonstrating no ill effects when the mother was receiving antiepileptic drugs, these findings support the breastfeeding of infants by mothers with epilepsy who are taking antiepileptic drug therapy” Birnbaum AK
Other studies have shown that babies who are breastfed from mothers using AEDs showed that continuous breastfeeding was associated with less impaired development at 6 months 18months compared with those babies were given no breastmilk or breastfeeding less than 6 months. Veiby G
Breastmilk is a carrier and a barrier, not all of what is the mother’s bloodstream will transfer over to the lactating glands, drugs will transfer to the breast milk to some degree but most often not to the extent that it will cause harm to the infant.
Some drugs by their build and by the nature in which they are carried in the blood, will transfer to the milk more readily than others. Once in human milk, there are other factors at play, some meds are destroyed in the infant gut, fail to be absorbed through the gut wall. Some drugs get rapidly directed to the mother’s liver where it is metabolized or stored and may never reach her plasma and what’s in her plasma will influence what is in human milk.
The bottom line is that it is generally safe to breastfeed while taking AEDs, some drugs will pass into breastmilk and it is usually low or below therapeutic ranges.
One woman I spoke to said this
“No one told me not to breastfeed so I just went ahead and did it. Not breastfeeding was not going to make life easier”.
Here are tips about managing medication during your pregnancy and in the postnatal period breastfeeding
Ø Find out more about your medications, ask you Neurologist or Epilepsy Nurse Specialist about your medication and let them know you plan to start a family and how you plan to feed your baby.
Ø If your inclination is to breastfeed to be told otherwise must be accompanied by evidence that the benefits of Not breastfeeding outweigh the advantages that human milk gives babies.
Ø It is best to find out about your medication through regarded sources. This is a freely accessible American resource https://www.ncbi.nlm.nih.gov/books/NBK501922/
Ø https://www.breastfeedingnetwork.org.uk/dibm-intro/ This is a British voluntary group founded by Wendy Jones Pharmacist. You can email this group about your medication. It is a voluntary group.
Ø Thomas W Hale Springer publication Medications &Mothers Milk is a reference book and any person working in lactation will probably have a copy of this book.
Ø These references set out the research that is available and it is up to you and your healthcare team to collaborate and decide what is best for you and your baby in the context of your desires and the effects of human milk on human health.
Ø During pregnancy your meds will cross the placenta to your baby, in fact, your baby gets higher dose of your AEDs during pregnancy than following birth through your milk. Ask your neurologist or your neurology clinical nurse specialist if you should expect your baby to feel the effect of withdrawal once your baby is born and what those withdrawal affects might look like. It may be excessive sleepiness, low blood sugar, reluctance to suck. It is worth noting that excessive sleepiness, low blood sugar and poor sucking may happen to babies whose mothers do not have epilepsy. Having a plan for this eventuality may help to alleviate stress and worry. This could be discussed with your Heath care team or a lactation consultant.
Ø Collaborate with your healthcare team regarding your meds, some meds may need to be increased during pregnancy and those meds may be reduced again after your baby is born Lamictal (Lamotrigine) being one of the most common one I experienced in my practice. You will be given clear instructions about this and if you not ask for a plan.
Ø Red flags need some attention it will help you to focus and change tact, seek help if your baby is unwell, seek medical attention. It may mean that you have to supplement for a while, or feed your baby milk by another means along with breast/ chest feeding. Breastfeeding/Chest feeding does not have to be all or nothing.
Ø Take your medications regularly, never stop taking you meds. Being seizure free reduces risks to you and your baby.
Ø For who “Zone out” and have memory difficulties consider a breastfeeding app and also an alarm to remind you to take meds.
Ø The timing of your meds with feeds may also minimise exposure to your baby. This is not always possible, once again knowing how your medication works may help with a plan to minimise exposure. E.G., offering expressed breastmilk at a particular point in the day. OR Expressing milk immediately before taking a medication or just straight after taking medication, this is useful if your baby is not ready for a feed at that particular time.
Ø Having seizure control gives you a degree of confidence in caring for your baby. Consider what your triggers are and have a plan – sleep deprivation, skipping meals, infection to name but a few. Have a plan in your head – think snacks, ask friends and families for meals to freeze, consider pumping and giving a bottle of EBM to cover a night feed. Most of the women with epilepsy I spoke to managed night feeds but had a stash of EBM if they felt unwell so that a partner of family member gave a feed. One mother said she became very aware of herself and how she was feeling and if she felt “OFF” she gave her baby to her partner to care for them or to a member of her family.
Ø Before you leave the hospital ask get details of who to contact if you have any issues with your meds or concerns regarding your baby.
Ø No matter how much you give your baby your own milk, any amount of breastmilk is good. Regardless of how you feed your baby when you don’t feel right or as my own daughter say when she feels “epileptic” you need to safeguard yourself and your baby.
Respect to you all. Thank you to the following women who agreed to talk to me about their experience in preparing for this blog. Sinead Murphy, Charlie Errity, Maeve Smyth, Claire Elizabeth Duncan Olivia O’Sullivan and the person who inspires all this Eva Martin
References
1. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00210-5/fulltext
2. https://www.who.int/health-topics/breastfeeding#tab=tab_2
3. https://www.hse.ie/eng/about/who/healthwellbeing/our-priority-programmes/child-health-and-wellbeing/breastfeeding-healthy-childhood-programme/policies-and-guidelines-breastfeeding/breastfeeding-in-a-healthy-ireland-report.pdf
4. https://www.hse.ie/eng/about/who/acute-hospitals-division/woman-infants/clinical-guidelines/practice-guide-for-mgt-of-women-with-epilepsy.pdf
5. https://pathways.nice.org.uk/pathways/epilepsy/special-considerations-for-women-and-girls-with-epilepsy.pdf
6. https://www.rcog.org.uk/globalassets/documents/guidelines/green-top-guidelines/gtg68_epilepsy.pdf
7. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/950069/Epilepsy-medicines-in-pregnancy-leaflet.pdf
8. Veiby G, Bjørk M, Engelsen BA, Gilhus NE. Epilepsy and recommendations for breastfeeding. Seizure. 2015 May; 28:57-65. doi: 10.1016/j.seizure.2015.02.013. Epub 2015 Mar 16. PMID: 25837494
9. Birnbaum AK, Meador KJ, Karanam A, et al. Antiepileptic Drug Exposure in Infants of Breastfeeding Mothers With Epilepsy. JAMA Neurol. 2020;77(4):441–450. doi:10.1001/jamaneurol.2019.4443
10. Veiby G, Engelsen BA, Gilhus NE. Early child development and exposure to antiepileptic drugs prenatally and through breastfeeding: a prospective cohort study on children of women with epilepsy. JAMA Neurol. 2013 Nov;70(11):1367-74. doi: 10.1001/jamaneurol.2013.4290. PMID: 24061295.
11. Thomas W Hale Springer publication Medications &Mothers Milk