Narcolepsy Nerd Alert: Pregnancy and Narcolepsy

Pregnancy and Narcolepsy: Considering Potential Risks

Potential risks to the unborn baby from medications must always be balanced with potential risks of untreated symptoms to the unborn baby and the pregnant person. Here are some questions to ask yourself or to explore with your partner or a loved one when considering risks and benefits of medication during pregnancy:

• What are my most severe symptoms with and without medications? (cataplexy, excessive sleepiness, brain fog)
• Have I ever gone off of medications before? How did this go?
• Are there potential safety risks for me or my baby if I am experiencing severe symptoms without treatment?
• If I were to adjust or go off of medications, what are some foreseeable impacts on my daily activities and responsibilities (e.g., will there be changes in my ability to drive, work, or care for family members)?
• How might we work through any shifts in my abilities? Who is on my support team? Are there individuals or support resources to ask for help during this time?
• Have I connected with other people with narcolepsy who have walked this path to ask questions and gather practical tips? 

Pregnancy is not one-size-fit-all. In fact, narcolepsy alone is not one-size-fits-all, so when we are adding layers we need to make sure we’re tailoring decisions to the person in front of us.

– Dr. Anne Marie Morse

Medication And Pregnancy

There are potential risks with the use of some medications used to treat narcolepsy. It’s important to have a detailed discussion with your doctor about what this means for YOU. 

• Possible increased risk of spontaneous abortions reported with oxybate therapies
• Intrauterine growth restriction, spontaneous abortions, major fetal congenital malformations, including congenital cardiac anomalies, reported with modafinil and armodafinil
• Vasoconstriction resulting in decreased placental perfusion with use of stimulants
• Premature delivery, low birth weight infants, neonatal withdrawal reported with amphetamine-dependent patients
• Premature birth, low birth weight, intrauterine growth restriction, vasoconstriction, neonatal adaptive syndrome, and pulmonary hypertension reported with use of antidepressants

Adjusting Medication

Some people may conceive right away, however, the duration of the preconception period can vary widely; up to two or more years. Thus, any adjustments to one’s narcolepsy treatment during preconception should be an individualized discussion between each person and their medical team. Here are some of the adjustments and considerations that our panelists discussed:

• Using ovulation strips to avoid having to discontinue medication before conception
• Staying on reduced doses of medication during preconception
• Managing symptoms with naps and workplace/school accommodations in the absence of medication
• Reducing or temporarily stopping medication through pregnancy and resuming postpartum while breastfeeding
• Being prepared for cataplexy triggers to change with changing emotional states and experiences during pregnancy

Do NOT be afraid to ask your healthcare provider(s) any questions you may have. If they cannot give you an answer, be sure they direct you to someone who can!”

– Diana

Tips During Pregnancy

If you choose to adjust, reduce, or stop medications during pregnancy, some coping strategies may be helpful. What works for each person varies; here are some ideas from our panelists: 

• More naps, less guilt
• Movement is a good way to maintain alertness
• Consider requesting accommodations (formal or informal) at work or school
• Try to anticipate cataplexy triggers and sit down
• Don’t stress about buying every piece of “baby gear” you think you may need

Planning For Your Baby’s Birth

It’s important to discuss a birth plan for your specific needs with your birth care providers. It can be empowering to talk about your preferred method of delivery, and how your team will respond if narcolepsy symptoms present severely or in other unforeseen circumstances. Our panelists prepared by thinking about the following topics:

• Vaginal delivery vs cesarean section
• Strategies to maximize chances of vaginal delivery, if desired
• Keep a hospital bag packed well before your due date and keep it with you at all times
• Upon arrival at the hospital, ensure providers (especially nurses) are aware of your narcolepsy diagnosis

It can be done… There are strategies to make pregnancy with narcolepsy feasible, and even enjoyable.”

– Emily

Postpartum

The first few weeks and months with a new baby can be emotionally and physically exhausting for many people. The impact of sleep deprivation may be especially acute for new parents with narcolepsy, particularly for those who choose to reduce or discontinue medications for reasons related to breastfeeding. Here are some considerations, strategies, and sources of support to consider:

• Working with a lactation consultant or postpartum doula
• Adjusting treatment plans if you experience “baby blues” or postpartum depression
• Attending couples counselling
• Making plans for nighttime responsibilities

Tips For When Baby Arrives

• Prioritize YOUR health and nutrition
• Be honest about how much sleep you’re getting
• Find small amounts of alone time
• If someone offers to help you, say yes
• Consider temporary hired help to manage household responsibilities
• Get outdoors for early light exposure and daily walks, which can help manage symptoms when on reduced medication
• Consider positioning for feeding times
• Let a support person/partner know when cataplexy triggers may be present
• Have multiple safe areas where you can set the baby down
• Be open to formula-feeding
• Set vibrating alarms to keep from dozing off without waking the baby while breastfeeding
• Find the right schedule for YOU when it comes to breastfeeding and pumping
• Place a small refrigerator in the bedroom and have bottles ready for nighttime feedings

Be kind and patient with yourself… And accept help from others!”

– Ashley

Medication During Lactation

Below is a summary of current evidence regarding the potential risks and strategies for breastfeeding while on medication. It’s important to have a detailed discussion with your doctor about what this means for YOU. 

• Oxybates have been detected in breast milk and sleep pattern changes in breastfed neonates have been observed
  • Exposure may be reduced by avoiding breastfeeding between nighttime doses and discarding milk expressed within 6 hours of dosing
• Wake promoting agents have been detected in milk from lactating animals and are likely present in human milk as well, but minimal data exists
• When using stimulants, breastfed infants should be monitored for adverse reactions, such as agitation, insomnia, anorexia, and reduced weight gain

Adoption

Adoption may be another route to starting a family. If you are considering growing your family via adoption, start by learning about your options and connecting with others who have adopted.

The two main ways to adopt in the U.S. are via an agency or private attorney. The adoption process will be different for everyone, whether you choose to adopt locally, statewide, or internationally. No matter what type of adoption you choose, you must have a home study completed by an accredited adoption professional.

If adoption sounds like a good path for your family, explore it and go for it!”

– Katie

Could My Child Develop Narcolepsy?

If you have narcolepsy, you may wonder what the chances are of having a child who also develops narcolepsy. Here’s what is known about the genetic factors of narcolepsy:

• Most cases of narcolepsy are sporadic, meaning they happen randomly with no family history of narcolepsy.
• When there is a familial pattern, it tends to be first-degree relatives that are affected.
• It is estimated that if you have type 1 narcolepsy with cataplexy (NT1), the chances of having a child with narcolepsy would be between 1-2%, compared to a general population chance of 0.02-0.08% (Mignot E, 1998).
• It is believed that it is less likely for people with type 2 narcolepsy without cataplexy (NT2) to have children with narcolepsy.

For more information on this topic, download the Pregnancy and Narcolepsy toolkit!

Pregnancy and Narcolepsy: Listen or Watch!

The Pregnancy and Narcolepsy broadcast originally aired on January 27, 2022.