Handbook of Genetic Counseling/Fetal Dilantin-Keppra Syndrome
Fetal Dilantin/Keppra Syndrome
- Introductions and small talk
- Acknowledge recent hospitalization
- Confirm referring physician
- Assess understanding of the reason for the referral to genetics
- How much information has your OB given you about the possible effects of taking dilantin/ keppra while pregnant?
- Despite the increased risk of problems, there is a greater than 90% chance that the baby will be just fine.
- What concerns or questions do you have that you would like to discuss today?
- Outline session agenda
- Medical and family history questions
- Some of the possible effects that anticonvulsants can have on the pregnancy.
- Options available to you
- Discussion of concerns and questions
Elicit Medical History
- Pregnancy/neonatal history:
- LMP: __________
- EDC: __________
- Today's gestational age: __________
- Have you had an ultrasound?
- Date of ultrasound: __________
- Results of ultrasound: __________
- How has the pregnancy been going so far?
- Seizures last week….any others
- What medications are you taking? Dilantin and Kepra
- Amount and frequency of each. When did you start taking each?
- When did you begin having seizures?
- What type of seizures do you typically have?
- Any complications other than the seizures? Infections, colds, exposures etc. (Review and confirm information from the intake form at Bethesda)
Elicit Family History
- Anyone with seizure disorders?
- Anyone had: multiple SAB, SB, early deaths or babies that required surgery as infants?
- Anyone born with: birth defects or mental retardation
- Has anyone had early cancers (dx. <50) or chronic illnesses (heart disease, diabetes)
Discuss possible side effects of taking anticonvulsants during pregnancy
- Stress importance of taking medicines- to keep you healthy and therefore the baby healthy
- Although it's very important for you to take these medications, sometimes seizure medications can have some effects on a developing baby.
- All pregnancies are at a 3-5% risk of birth defects and mental retardation
- Women who take anticonvulsants are at a 2-3x increased risk for some specific problems.
- This doesn't mean that the baby will be born with a problem, it just means that we know that based on your special circumstances, your pregnancy is at an increased risk.
- Some of the things that we sometimes see in children who have been exposed to dilantin during pregnancy include:
- Subtle changes in the face..such as the shape of the eyes and nose. These are usually such subtle features that you might not even recognize them
- Sometimes we see changes in the length of the fingers (slightly shortened) and the size of the fingernails (tiny)
- But sometimes children can be born with more apparent changes such as a cleft lip/palate or an open spine.
- Occasionally we see kids who have some delays in development ranging from borderline normal intelligence to mild mental retardation.
- There is a small risk of other birth defects dealing with the heart and intestinal tract.
- Keppra: this anticonvulsant hasn't been well studied but we do know that anticonvulsants in general have been associated with an increased risk of birth defects.
- Some children who have been exposed to anticonvulsants during pregnancy have several of these features and some have none. Just based on your history I can't tell you whether or not your baby will have some or none of these features, but we do have some options that we can offer you.
- Level II ultrasound- high resolution to look at the anatomy. ~16 weeks is a good time, but (20+ is ideal).
- High resolution u/s
- Done by an experienced technician
- Better to see more of the developing organs in greater detail
- Will be looking closely at the features of the baby….spine, heart, brain, shape of the head to make sure that these organs/tissues formed correctly.
- U/S is good to make us suspicious of some birth defects but it can't tell us everything. We won't know if there is mental deficiency by u/s. Also, u/s is dependent upon cooperation of the baby. Sometimes we just can't get a great view and may not be able to see everything we are looking for.
- However, a normal ultrasound would certainly be reassuring.
- Who is living in your home?
- How are the childcare needs being met?
- Plans for additional children?
- Do you have any financial concerns?
- Registry for patients taking anticonvulsants…
- Do you plan to breast feed the baby? Dilantin is compatible with breast feeding.
The information in this outline was last updated in 2002.