My Child Has Dravet – Now What?

My Child Has Dravet syndrome – What Next? 

  • Find a child neurologist that has experience in Dravet syndrome.  Check out the Dravet syndrome article page with links to articles.  The physicians listed are experienced in treating Dravet syndrome.    To locate an epilepsy center in the US registered with the National Association of Epilepsy Centers, go to www.naec-epilepsy.org
  • It will be helpful if you can record your child’s seizure activity with a video recorder to show the child neurologist.  It is often hard to describe seizure types, an epileptologist can most accurately determine what type of seizure your child is having is through a video EEG in an epilepsy monitoring unit (EMU).  Seizure typing is important for choosing anti-epileptic drug therapy.  Having a video of your child’s seizures may help your child’s neurologist if your child does not have seizure activity while in the EMU.  It will also be helpful to keep a journal of seizure activity, medication changes, illness, triggers, etc.  You may choose to write this information in a notebook or utilize online seizure tracking software through www.seizuretracker.com or www.myepilepsydiary.com
  •  Avoid drugs that have evidence of worsening seizures in Dravet syndrome (See Understanding Dravet syndrome)        
  • Advocate to maximize seizure control while balancing medication side effects – this is hard in drug resistant or intractable epilepsy.  Ask your child’s neurologist about clinical studies that may be available, watch the ICE website for new treatment options including dietary options and Orphan drugs.  Small seizures are still seizures and affect a child’s ability to remember and learn. 
  • Follow child’s developmental milestones and enlist the help of a developmental pediatrician or psychologist through  neuropsychological testing.  (for more information, see Resources and  www.pbs.org/wholechild/abc  )
  • Contact your local Infant/Toddler program within your public school system for developmental testing, monitoring, and services if your child is under three years old.  Private testing and monitoring is also an option, discuss referral by your child’s pediatrician or neurologist.  By having an early neuropsychological test and regular monitoring, you can watch for milestone development and delay.  The testing will determine if  or when your child needs speech, occupational, physical, or behavioral therapy.  Children with Dravet syndrome often have low muscle tone and an abnormal gait.  The use of orthotics prescribed by a physical therapist may prevent painful changes in bones of the feet and tendons that lead to chronic pain in the teen and adult years.   (see Orthotics article under Resources)
  • Parents are often afraid to send a Dravet child to preschool because of fear of the child having a seizure and/or fear that the child will continue to get infections from being exposed to other children.  While these fears are real potentials,  studies have proven that exposing children to an “enriched environment” where they can learn from peers and socialized is better for the child’s intellectual and social development than keeping the child in isolation.  Discuss having a one-one-one assistant for your child with your public school officers so that the child may enjoy the preschool experience and so that you may feel a little better about allowing your child to have the experience.  
  • If your child is three or older, discuss utilizing the public school system for neuropsychological testing as a baseline and for monitoring so that if a learning problem arises, your child can have an Individualized Education Plan (IEP) to enhance his learning and optimize his education.  Private testing and monitoring is also an option, discuss referral by your child’s pediatrician or neurologist.  The testing will determine if or when your child needs speech, occupational, physical, or behavioral therapy as well as any accommodations in the classroom (see Resources).   Discuss having a one-one-one assistant for your child with your public school officers.
  • Most children with Dravet syndrome have  a history of prolonged seizures (> 5 minutes) or clusters of seizures (more than one seizure in 12 hours).  Have a plan for seizure emergencies including a prescription for a medication that may stop seizure at home (known as a rescue medication) such as rectal diazepam (Diastat®) or buccal midazolam (Epistatus®-UK only).  It is helpful to have your child’s neurologist type the emergency seizure management plan including when to give the rescue medication, when to call an ambulance, and any intravenous anti-epileptic drugs that should be avoided at the emergency room if known and print it on office or hospital stationary and sign it.  If your child has prolonged seizures frequently, the neurologist may wish to prescribe oxygen and a oxygenation monitor (pulse oximeter).  (see Drug Information)
  •  A seizure should not last  longer than one hour.  (see status epilepticus under Epilepsy)  If it is questionable whether the seizure has stopped in the hospital (i.e., the child has had episodes of non-convulsive status epilepticus), ask the doctor if an EEG is appropriate to determine if seizure has stopped. 
  • Discuss having a sick plan for your child with his neurologist.  Sometimes doctors recommend additional or different types of medication to help get a child through an illness such as a cold or infection.  Keep recommendations for fever reducers updated as child’s weight changes.  (see Drug Information)
  • Make sure all caregivers and teachers understand what to do in an emergency or if the child is sick.  It is often hard for parents to leave their child in someone else’s care because of fear.  It is important to find respite care and take care of yourselves as caregivers.  Discuss options for respite care with a hospital social worker, an insurance case manager, your pediatrician, or your neurologist. 
  •  Dravet children are often very sensitive to heat, even modest temperature elevations.  Make sure everyone knows to keep the child cool and not overdressed.  Order a cooling vest at www.coolingapparel.com for your child’s heat intolerance.  Polarized, blue tinted sunglasses may prevent photosensitivity induced seizures, especially on car rides.  Adaptable strollers are useful in preventing a child from getting overheated or too tired and can be ordered through your child’s physical therapist or neurologist (most insurers will cover – see Resources for template letter).  Oversized car seats are useful for bigger children who like to free themselves in the car.  Some insurance companies will pay for this and seats can be ordered through your child’s physical therapist.  If your insurer will not pay, you can get an oversized car seat from Britax for $279.00 http://www.britaxusa.com/car-seats/frontier-85
  • Do not leave child unattended in the bathroom or swimming pool in case seizure occurs. Children with Dravet syndrome are often “fearless” and need to be watched so they do not injure themselves, accidently fall from heights, or dart in front of a vehicle.  Your child’s neurologist, physical therapist, or teacher may recommend a protective helmet to prevent head injuries from falls that may occur during seizures.  A couple of websites that sell protective seizure helmets are www.danmarproducts.com and www.plument.com.  If your child has atonic “head drop” seizures or other seizure types in which he hits his head on a table, you may wish to purchase a protective mat designed for these seizure by a mother of a son with epilepsy at www.seizuresupport.com
  • Don’t forget about your other children and your spouse.  Having a child with a chronic illness is hard on family relationships and on the sibling.  Family counselors are trained to help families deal with children with chronic illness. Programs are available across the country for siblings and families.  (see Resources) 
Share/Bookmark