Among those who have lost a loved one to Sudden Unexpected Death in Epilepsy – or SUDEP – too many share a common experience: they had never heard about the risk that their child could die from the disease.
A tragic example is the story of Danny Stanton (see, “What Danny Did, and Still Does,” below). His mom and dad only learned about the term “SUDEP” from his death certificate.
What is SUDEP?
SUDEP refers to deaths in people with epilepsy that are not caused by injury or drowning, for example, or other known causes. Many cases of SUDEP are believed to occur during or immediately after a seizure. Studies show that about 1 in 1,000 people with epilepsy die suddenly. Among those whose seizures are not controlled by medication, that rate increases to 1 in 150.
Risk factors for SUDEP
Danny’s parents established the Danny Did Foundation in 2010, with the purpose of keeping people alive until the ultimate solution – a cure for epilepsy – is achieved. People with lack of seizure control are at greatest risk for SUDEP. The foundation tries to raise awareness of the risk factors, such as:
Having convulsive seizures, also called tonic-clonic or grand mal seizures
Seizures that happen during sleep, also called nocturnal seizures
Missing seizure medications. Not taking medication as prescribed can lead to more seizures, which raises risk.
How to minimize SUDEP risk
While there is no cure to prevent SUDEP, there are steps that patients with epilepsy and their families can take to minimize the risk as much as possible. Strategies include:
Striving for maximum seizure control by closely following treatment plans
Regular exercise, and lifestyle habits that reduce stress and seizure activity
Regular doctor visits, especially if convulsive seizures are not controlled
Monitoring for seizure activity specifically during sleep hours
Considering options such as epilepsy surgery, or dietary therapy
Talking with your doctor about a cardiac evaluation, to rule out heart problems
Ensuring that family members and caretakers know seizure first aid and emergency resuscitation measures, including CPR and defibrillator use
Seizure alerts & safety checks
The best way to prevent SUDEP is to prevent seizures. Short of that, having another person present during or right after a seizure is a huge plus for safety. Most SUDEPs occur when a person is alone. However, there are technologies and devices that can alert family members and caregivers when a seizure happens, so they can do a well-being check. A growing number of alerting systems exist, but awareness of them remains low and insurance coverage is rare–even for the few among them that have FDA approval.
Caregivers can explore alerting devices as an added safety measure within a treatment plan. The Danny Did Foundation provides counseling for parents on how to select a device, as well as grant funding for families who need financial support to access a device.
What Danny Did, and Still DoesBy Mike Stanton
My son, Danny, died of SUDEP after a nighttime seizure when he was 4 years old. My wife and I feel the best way to honor the life of Danny is to redouble our efforts to prevent this tragedy from happening to others. In 2010, we established the Danny Did Foundation.The Danny Did Foundation works with the American Academy of Pediatrics to serve as a resource for questions and support. We collaborate with fellow advocates, healthcare providers and most of all, families, to educate and make positive change within the epilepsy community.Danny remains at the heart of the foundation’s efforts, and our family. I talk to Danny every day. I ask him how he’s doing, I care for him and I enfold his presence into mine: we remain parts of the same circle.The years since Danny’s death have sculpted a new relationship between us. What at the beginning was complicated has smoothed out into welcome routine. As with any relationship, there are emotions: happiness and sadness, and there is too a dual longing for what was. Regardless, ours is a parent-child relationship, and so —undeterred by the logistics— we still share adventurous eyes toward the future. He is my son, and I am his dad.Danny Did Foundation takes its name from the last line of Danny’s obituary. “Please go and enjoy your life. Danny did.” We celebrate Danny’s spirit in every child and family we reach.
Communication is key
Like so many parents, Danny’s mom and dad believed they had the best possible treatment plan in place. Yet, 10 years later, awareness of epilepsy’s mortality risk remains stubbornly low. Mortality rates for people with epilepsy are up to three times higher than the general population, and caregivers in our community deserve and need to be informed. If you haven’t had a conversation with your healthcare team about SUDEP, ask about the risk level for your child.
Parents of children with epilepsy will most likely need to explain many times and over many years what the condition is to not only your child, but to other children and family and friends of all different ages.
Sometimes, it can be hard to talk about epilepsy. There is fear and misunderstanding about epilepsy and seizures, but epilepsy is a common neurological condition—an estimated 0.6% of children have active epilepsy.
Talking about epilepsy can help people realize that children with the condition are just like other children and can lead full, active lives.
Talking honestly and openly about epilepsy will also help teachers, coaches, babysitters, family, friends, and other people who are with you children understand what epilepsy is (and what is not). You will also be able to tell them what to do in case of a seizure.
General Tips on Talking about Epilepsy:
Try to stay matter-of-fact and positive.
Have resources ready to share.
Practice some conversation starters.
The key message is that people with epilepsy deserve respect and understanding and can lead full, happy lives like everyone else.
Talking to Your Child or Other Children about Epilepsy:
Be positive and use easy to understand language, not complex terms.
Encourage them to ask questions and be honest about their fears.
If you don’t know the answer to a question, tell them you will find out and then follow through.
Share stories with pictures. You may want to share them with your child’s teacher, too.
If your child has epilepsy, help them understand their seizures, medications, or treatments. Remember to continue these conversations as your child grows and is prepared to understand more details about his or her seizures and treatments.
Helping Your Child with Epilepsy Talk about It:
Your child may be nervous to talk about having seizures and epilepsy. They may not want to talk about it right after diagnosis and that’s ok. They don’t have to tell everyone; they may want to wait until they have had some time to think about it.
When are they ready to talk, here are some things parents can do to help:
Explain why it’s important to talk about epilepsy and why educating others will help reduce fear and misunderstanding. Let them know how important it is for others to know what to do if they have a seizure.
Give them tips on conversation starters.
Help them understand what kind of questions they may be asked and how they could answer them.
Encourage them to keep talking with you about how they feel. Let them know you want to hear their concerns and questions.
Seizures are sudden events that cause temporary changes in physical movement, sensation, behavior or consciousness. They are caused by abnormal electrical and chemical changes in the brain.
There are many different types of seizures. Some last for only a few seconds, while others may last a few minutes. The specific type of seizure a person has depends on where in the brain the seizure starts, how the seizure spreads and how much (and what part) of the brain is involved.
Common Seizure Types:
Doctor’s divide seizures into two basic categories based on how much of the brain is involved. These include:
Generalized seizures that involve the whole brain.
Focal seizures that start in one specific part of the brain.
Seizures might include:
Loss of consciousness
Convulsions (whole body shaking)
Brief periods of staring
A sudden feeling of fear or panic
Uncontrolled shaking of an arm or leg
Flexing, stiffening, jerking, or twitching of the upper body
Nodding of the head
For more detailed information on specific seizures types.
What is Epilepsy?The term epilepsy is used to describe seizures that occur repeatedly over time without an acute illness (like fever) or an acute brain injury. Sometimes, the cause of the recurring seizures is known (symptomatic epilepsy), and sometimes it is not (idiopathic epilepsy).A doctor would likely diagnose a child with epilepsy if the following were true:The child has had one or more unprovoked seizures.The doctor thinks the child is likely to have a seizure againThe child’s seizures are not directly caused by another medical condition, like diabetes, a severe infection or an acute brain injur
Common Generalized Seizures:
Convulsive seizures (also called generalized tonic-clonic seizures)involve the whole body. These seizures used to be called “grand mal” seizures. They are the most dramatic type of seizure, causing rapid, rhythmic and sometimes violent shaking movements, often with loss of consciousness. These can sometimes start in one part of the brain, causing one part of the body to move, and then progress to the entire brain and movements on both sides of the body. These seizures usually last for 2 or 3 minutes and will almost always end on their own.
Convulsive seizures occur in about 5 out of every 100 people at some time during childhood. It is important to note that not everyone who has a single convulsive seizure will go on to develop epilepsy.
Absence seizures(previously called “petit mal” seizures) are very short episodes with a vacant stare or a brief (few seconds) lapse of attention. They may be accompanied by other subtle symptoms like eyelid fluttering, rapid eye blinking, lip smacking. These occur mainly in young children and may be so subtle that they aren’t noticed until they begin affecting schoolwork.
Common Focal Seizures:
Focal seizures (previously called complex partial seizures) involve abnormal electrical activity in one part of the brain. During these seizures a person can be confused and consciousness is impaired. They often engage in random, repetitive and purposeless activities like wringing the hands or walking slowly in circles. The person is unaware of what is going on around them and may be unable to talk normally. This type of seizure typically lasts 1 to 2 minutes.
Focal seizures can involve jerking of one or more parts of the body, or sensory changes like smells or tingling feelings that may not be obvious to onlookers. During the seizure the person is fully aware of what is going on. These seizures where consciousness is not impaired have been called Simple Partial Seizures.
Focal seizures can start in one area of the brain, and spread to involve both sides of the brain. In some instances a focal seizure can progress to a convulsive seizure.
Other Disorders That Can Look Like Seizures:Some children experience sudden episodes that might masquerade or imitate seizures, but are really not.Examples include:Breath holdingFainting(syncope)Facial or body twitching (myoclonus)Sleep disorders (night terrors, sleepwalking, and cataplexy)They may occur just once or may recur over a limited time period. Again, although these episodes may resemble epilepsy, they are not, and they require quite different diagnostic tests and treatment.
If Your Child is Having a Convulsion:
Most seizures will stop on their own and do not require immediate medical treatment. If your child is having a convulsion, protect her from injuring herself by laying her on her side with her hips higher than her head, so she will not choke if she vomits. Do not put anything in the mouth.
If the convulsion does not stop within five minutes or is unusually severe (difficulty breathing, choking, blueness of the skin, having several in a row), call 911 for emergency medical help. Do not leave your child unattended, however. After the seizure stops, call the pediatrician immediately and arrange to meet in the doctor’s office or the nearest emergency department. Also call your doctor if your child is on an anticonvulsant medication, since this may mean that the dosage must be adjusted.
If your child has diabetes, is injured or has a seizure in the water, this is always an emergency and 911 should be called immediately.
If your child has a fever, the pediatrician will check to see if there is an infection. If there is no fever and this was your child’s first convulsion, the doctor will try to determine other possible causes by asking if there is a family history of seizures or if your child has had any recent head injury. He will examine your child and also may order blood tests, pictures of the brain using computed tomography (CAT scan) or magnetic resonance imaging (MRI), or testing with an electroencephalogram (EEG), which measures the electrical activity of the brain. Sometimes a spinal tap will be performed to obtain a specimen of spinal fluid that can be examined for some causes of convulsions such as meningitis, an infection of the lining of the brain. If no explanation or cause can be found for the seizures, the doctor may consult a pediatric neurologist, a pediatrician who specializes in disorders of the nervous system.
If your child has had a febrile convulsion, some parents may try controlling the fever using acetaminophen and sponging. However, these approaches do not prevent future febrile seizures, but only make the child more comfortable. If a bacterial infection is present, your doctor will probably prescribe an antibiotic. If a serious infection such as meningitis is responsible for the seizure, your child will have to be hospitalized for further treatment. Also, when seizures are caused by abnormal amounts of sugar, sodium, or calcium in the blood, hospitalization may be required so that the cause can be found and the imbalances corrected.
If epilepsy is diagnosed, your child usually will be placed on an anticonvulsant medication. When the proper dosage is maintained, the seizures can almost always be completely controlled. Your child may need to have her blood checked periodically after starting some medications to make certain there is an adequate amount present. She also may need periodic EEGs. Medication usually is continued until there have been no seizures for a year or two.
As frightening as seizures can be, it’s encouraging to know that the likelihood that your child will have another one drops greatly as she gets older. (About 1 in 100 adults 18 and older have active epilepsy). Unfortunately, a great deal of misunderstanding and confusion about seizures still exists, so it is important that your child’s friends and teachers become educated about her condition.
Parents play a key role in making sure their child with epilepsy is safe, while still allowing him or her to participate in many of the typical activities of childhood.
Guidelines for Keeping Your Child Safe at Home & in the CommunityThere are a few basic things you can do to make sure you child is safe in a variety of situationsTeach family members and friends proper seizure first aid.Inform family and friends when to call for help (i.e., when your child’s seizure should be considered an emergency).Have your child wear medical alert bracelet or necklace that says he or she has epilepsy.Ensure that your child takes his or her medicine on time, every day. This is very important to reduce chance of seizures.Make sure your child gets enough sleep. Not getting enough can lead to more seizures.Consider a helmet for your child, if he or she has seizures that cause frequent falls.A Seizure Action Plan can be a useful tool to share with family and friends. It will help them all know what to do if your child has a seizure.
Simple Steps to “Safety Proof” Your HomeThere are many simple things you can do to make your home safer for your child.Place padding on sharp corners, like those on tables and counters.Avoid glass tables.Have your child sleep on a low-lying bed.Use non-slip carpet.Avoid throw rugs.
If your child wanders during a seizure, try the following:
Shut and lock doors that lead outside. Consider putting alarms on doors to alert you if a door has been opened.
If your older child is ever at home alone, be sure a neighbor or friend has a house key to check on your child.
Put a locking “safety gate” at the top of stairs.
Heat Sources & Fires Can Be Dangerous
If your child has uncontrolled seizures, you need be extra careful when around all heat sources.
Heat safety tips for your kitchen:
Have your child use a microwave for cooking – this is safest.
If your child needs to use a stovetop, make sure he or she uses the back burner.
Electric burners are safer than flames.
Consider serving hot things right off the stove onto plates.
Make sure cups of hot liquid, like hot chocolate, have lids to avoid burns from spills.
Heat safety tips for around the house:
Be aware that hairdryers, curling and clothing irons, and open flames (fireplaces, campfires, candles) can be safety hazards and need extra caution.
Hot water can cause burns, so set the maximum hot water temperature in your house to 110 degrees Fahrenheit or less.
Consider placing guards on open fireplaces, wood stoves, and radiators.
Do not allow anyone to smoke in your home.
Do not allow your child to use or play with matches.
High Places Need Extra PrecautionIf your child is still having seizures, he or she needs to be very careful around heights.Put carpeting on staircases and at the bottom of stairs to reduce injuries from falls and slipping.Avoid unprotected heights, like ladders. If your child wants to go up high, at home, school or for recreation, make sure he or she is wearing a safety harness and helmet.
Use Power Tools & Outdoor Equipment with Care
There are simple things you can do to make sure you child is safe when using any tools or electric equipment.
Make sure all equipment for cutting, chopping, and drilling has safety guards.
Make sure electric or gas powered equipment (lawn mowers, etc.) have an automatic shut-off switch – this means that it stops when you stop holding it.
When using any tools, make sure your child wears protective eyewear, gloves and appropriate footwear.
Water can be Dangerous – Both Inside and Outside Your Home
When your child is around water, whether it is in the bathroom or the local pool, extra safety precautions need to be in place. Children with seizures should never bathe and swim without close supervision.
Have your child take a shower rather than a bath. If you child does take a bath, keep the water level low. Ideally stay with your child while he or she is taking a bath. Ask for the bathroom door to remain unlocked.
Use safety glass, plastic, or a shower curtain for a shower door. Use safety glass in mirrors, as well.
Have your child wear a life jacket when swimming in a large body of water to ensure that he or she always stays above the water’s surface.
Make sure your child is never left unsupervised while in a pool, hot tub, inflatable pool, wading pool, etc.
Encourage Children to Participate in Sports – Safely!Playing sports can promote physical health, build community and enhance self-esteem. Children with well-controlled seizures can enjoy nearly all sports, from baseball to basketball to soccer.Contact sports can even be OK for some children with seizures, since there is no evidence they induce seizures.Swimming and water sports, harnessed rock climbing, horseback riding, and gymnastics can also be safe with for children with well-controlled seizures, as long as there is appropriate supervision.Free climbing, skydiving, hang-gliding, and scuba diving are not safe.
Tips for Bicycle & Driving Safety
Bicycle safety begins at a young age. Safety rules also apply to roller blades, inline skates, scooters (anything with wheels). Helmets are essential to protect a child from scalp and brain injuries, as well as facial bruising if a seizure were to occur.
Driving is not permitted when seizures are not controlled. State laws differ as to when an individual with epilepsy can drive. Know your state’s laws about driving with epilepsy.
For additional questions or concerns, contact your child’s pediatrician.
About 1 out of 10 people may have a seizure during his or her lifetime.
If you saw your child―or any child― having a seizure would you know how to help?
Seizures can be alarming. They are caused by surges in the brain’s electrical activity and can cause a child to fall down and shake or twitch violently. Or, a child may suddenly become unresponsive during a trance-like staring spell.
While this all sounds scary, the American Academy of Pediatrics wants parents to remember that seizures in children usually are not medical emergencies; the majority of seizures in children will end on their own within five minutes.
Here are some first aid reminders should your child or a child in your care ever have a seizure:
Stay calm and provide first aid help to prevent the child from being injured during the seizure.
Know when to call 911 for a child’s seizure.
Follow up with your child’s doctor after the seizure.
Steps to take if a child is having a seizure: If you aren’t sure if a child is having a seizure, give him a light touch and loudly call his name to try and get his attention.Stay with the child―do not leave her alone!Lower the child to the ground and turn him on his side. This will prevent him from choking if he vomits.Make sure there are no sharp or hard objects nearby. Do NOT try to restrain or hold a child still during the seizure.Do NOT place anything in a child’s mouth―like a rag or a sock. Many children clench their teeth during a seizure; you could get bit or injure the child. Look at the clock. Try to time how long the seizure lasts.
When should I call 911 for a child’s seizure?
If this is your child’s first seizure
If the seizure lasts more than 5 minutes
If your child is having back-to-back seizures and not returning to normal in between
If your child is not waking up after the seizure
If your child was injured during the seizure
If your child has any trouble breathing
If your child’s seizure happens in the water
If your child has diabetes or other life-threatening medical conditions
Follow up with your child’s doctor after any type of seizure.
Children should always be seen by their doctor to determine what caused the seizure—high fever, for example, or other medical problems or neurological conditions such as epilepsy. Your doctor can help you treat any underlying causes identified, and can help create a “seizure action plan” in case your child ever has any more seizures.
Making sure your child takes medicine exactly as the doctor prescribes is the most important thing you can do to prevent seizures.
Important Tips to Remember:Keep all medications up and away from young children. Some seizure medications are very dangerous if children take an overdose.Create a reminder system for medications. From pill boxes to smartphone reminders, there are many techniques to help you and your child remember to take medication.Do not run out of medications. Request drug refills several days before your child’s seizure medications will run out. Depending on the medication, special insurance approval may be needed for a refill to be completed. Discuss with your doctor what to do if your child misses a dose. All epilepsy patients miss medication doses at some point. Depending on the seizure medication, it may be okay to take two doses close together or it may not be.Talk with teachers, school nurses, child care workers, and other caregivers about your child’s seizures. Caretakers should know the details of your child’s seizures, including what seizures look like, how long seizures typically last, whether or not your child has to be taken to the hospital after a seizure, and any rescue medications needed to make seizures stop.If rescue medications are prescribed, your child’s school or child care needs access to these medications. Make sure they are trained to administer the rescue medicine, and have access to your child’s seizure action plan.Be honest about how often your child misses taking seizure medicine and how often they have seizures. Your child’s doctor cannot make good decisions about how to prescribe seizure medications if they do not have correct information. Be honest with your child’s doctor!Allow your older child to transition to being responsible for taking seizure medicine. Some children with epilepsy continue to have seizures into adulthood. Allowing your child to take an active part in treatment, from an early age, helps later as a teenager becomes a young adult. Some ways to start making this transition include having your teen fill pill boxes, set reminder alarms, and make calls to request medication refills.
No one knows why the ketogenic diet―which was developed in the 1920’s―works so well for seizure control, but it does. And these days, it’s widely considered one of the hottest food fads in America.
What is the ketogenic diet?
The ketogenic diet (also known as the “keto diet”) is a high fat, low carbohydrate, and “just enough” protein for growth and maintenance diet. Typically, it follows a ratio of 3-4 grams of fat for every 1 gram of carbohydrate and protein. This means that about 90% of the calories come from fat, requiring those on the diet to eat mostly fatty foods such as butter and cream. Although it may sound terrible, there are many creative recipes that make this a tasty approach. What distinguishes the traditional ketogenic diet from the modified-Atkins diet is the rigorous attention to food intake and limitation on total calories.
When should a ketogenic diet be used for seizure control?
Some children with epilepsy can have disabling seizures―up to hundreds per day―which can severely limit their quality of life and prevent them from participating in school and social activities. Seizure control is the first step in helping kids with epilepsy achieve otherwise normal lives. When medication isn’t working and/or the side effects from it are too much to bear, the ketogenic diet might be offered as a treatment option. In fact, the statistics show that it is often more effective than another, new medication, and frequently also improves alertness and behavior.
According to a 2008 consensus report from an international expert panel, the ketogenic diet “should be offered to a child after two anticonvulsants are used unsuccessfully.” The diet must be started and maintained under close medical supervision of an experienced medical team—including a dietitian.
Ketogenic diet looks different for every child and depends on several factors:
The child’s age and weight
How the child and family eat (kosher, halal, vegetarian, organic)
The child’s diet prescription (the specific combination of fats, protein, and carbohydrates weighed out)
The diet may not work for everyone but is suitable for many different patients.
The ketogenic diet can be effective for all seizure types and epilepsy syndromes. Some of the specific disorders that often respond to the diet include infantile spasms, myoclonic-astatic epilepsy, Dravet syndrome, Doose syndrome, myoclonic-astatic epilepsy, Rett syndrome, migrational disorders, GLUT-1 deficiency and tuberous sclerosis complex.
Ketogenic Diet in the Treatment for Infantile Spasms The American Academy of Neurology and the Child Neurology Society recommend adrenocorticotropic hormone (ACTH) as the first line of therapy for infantile spasms. The goals for this medication are to completely stop the infantile spasms and improve the abnormal EEG. In some cases, pediatric neurologists prescribe the seizure medication Sabril® (vigabatrin), especially for patients with tuberous sclerosis. Both drugs work well, but your child’s doctor will talk with you about which medicine may be the better choice for your child.If those medications do not work well, the ketogenic diet can be particularly helpful when used early in the course of the disorder. Using a formula-only ketogenic diet for infants and gastronomy-tube fed children has been shown to work better than medications over time.
Typically, children are started at a Level IV Epilepsy Center and monitored as in-patients by a ketogenic diet team that may include a pediatric neurologist, pediatric epileptologist, nurse practitioner, dietitian, nurse, and social worker.
How well does it work?
Although it does not work for every child, several studies have shown that the ketogenic diet does reduce or prevent seizures in many children whose seizures could not be controlled by medications or those who were unable to tolerate the side effects of their medications.
Over half of children who go on the diet have at least a 50% reduction in the number of their seizures. It can start to help after just one week, but more often it can take a few weeks up to several months to judge whether it will be effective. If the diet successfully controls seizures, it may be continued for several years under the supervision of the child’s health care team. Many children on the ketogenic diet continue to take seizure medications but on average they require one less medication and often the dosage of remaining ones is lowered.
Does the ketogenic diet have any side effects?
The ketogenic diet may cause side effects in some children, including constipation, reflux, weight changes, and kidney stones (due to uric acid build-up in the blood). These problems can be minimized by staying hydrated and careful monitoring. Some families notice mood changes such as hyperactivity or irritability.
Many of the side effects can be reduced by adjustments to the diet or with additional medication.
If you are considering the ketogenic diet, ask your child’s doctor to explain all possible side effects, what you should watch for and what action you should take for each one.
Special Considerations for Families:The ketogenic diet meal planning and preparation take time. This can fit into your family schedule, but it takes practice and gets easier as you adapt to the new routine. All food or formula needs to be weighed daily and each meal must be eaten in its entirety.The diet is very restrictive, especially for a young child. It controls the type of food and the quantity of food. Some children may feel isolated at school, because they cannot eat “normal” food. Many are just unable or unwilling to follow it, but most find it a far better alternative than frequent seizures.It can be adapted to all ethnic diets―as well as for children who are allergic to dairy products (although this can further limit already narrow food choices). The dietitian will be a great resource for you along the way and can help calculate the diet with foods your child likes.There is a chance that, no matter how closely the diet is followed, it might not work for some children.Children must be followed closely by a doctor as they follow the ketogenic diet. It is not something to try on your own.Parent to Parent: Would you recommend this? A 3 to 6-year follow-up study of 150 children with epilepsy on the ketogenic diet asked parents the question, “Would you recommend the diet to someone else?”An overwhelming majority (90%) of parents said that they would. Even though the keto diet is extremely restrictive, time consuming, and requires rigid maintenance, most parents found the potential benefits outweighed its drawbacks. Many parents in the study were more concerned about the side effects of the medications―and were grateful for the opportunity to explore an alternative option. Further, 55% would consider trying the diet again.
Are there other special diets for seizures?
Yes. Other special diets include: modified-Atkins diet, low glycemic index treatment, and MCT ketogenic diet. These may be used instead of the ketogenic diet for some children. If you have questions or would like to explore these options, talk with your child’s doctor
Watching your baby’s every movement typically brings parents so much joy. But when a baby shows signs and symptoms of a serious neurological condition such as infantile spasms (IS), that joy can quickly turn into concern.
Infantile spasms are little seizures with big consequences. Early recognition leads tobetter outcomes; waiting to seek treatment can increase your baby’s risk of permanent brain injury.
What are infantile spasms?
Infantile spasms, first described with a group of symptoms known as West syndrome, is a form of epilepsy that occurs in 1 in 2,000 children. It typically begins between 2-12 months of age and peaks between 4-8 months of age.
What do infantile spasms look like?
While these seizures may last only a second or two, they often happen close together with each spasm occurring every 5-10 seconds in a series. During a spasm, the body stiffens suddenly, the back may arch, and the arms, legs, and head may bend forward. However, infantile spasms can sometimes be hard to notice—perhaps only the eyes roll up or there is a small tummy crunch. They are most common just after a baby wakes up and rarely occur during sleep.
Early diagnosis is key
It is very important that infantile spasms are diagnosed early. If you suspect your baby may be having infantile spasms, talk to your pediatrician right away. Your child may need to be seen by a pediatric neurologist. If you can, try to video any episodes of your baby having a spasm and show this to your child’s doctors.
You may be told to go to the emergency room so a pediatric neurologist can examine your child. Your child may have to be admitted to the hospital to have a test called video-electroencephalogram (EEG) monitoring. Video-EEG is needed to verify specific brain-wave patterns during the spasms and to document specific patterns in between the spasms. Pediatric neurologists look for a distinct EEG pattern called hypsarrhythmia. The seizures’ appearance and EEG are so distinct that the diagnosis of infantile spasms can be made with certainty in most cases. Determining the cause of the spasms may be more difficult.
Causes of infantile spasms
There are many causes of infantile spasms; almost any brain abnormality or brain injury can cause them. More than 50 genetic/metabolic diseases are associated with infantile spasms, and many patients have other disorders that cause developmental delays (e.g., cerebral palsy, Down syndrome, tuberous sclerosis, etc.) prior to the onset of the spasms.
Determining the cause of infantile spasms is very important, because it affects treatment and prognosis.
Know the signs to ‘STOP’ Infantile Spasms.Keep this easily remembered acronym in mind: ‘STOP’ Infantile Spasms.See the signs: Clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.Take a video: Record the symptoms and talk to your doctor immediately.Obtain diagnosis: Confirm an irregular brain wave pattern with an EEG test.Prioritize treatment: End spasms to minimize developmental delays
The American Academy of Neurology and the Child Neurology Society recommend adrenocorticotropic hormone (ACTH) as the first line of therapy for infantile spasms. This medication is given as a shot. The first doses are given in the hospital so your child can be closely watched for any side effects. Since your child will need to continue to get ACTH shots for about 6 weeks, you will be instructed on how to give your child the injections at home. The goals for this medication are to
Completely stop the infantile spasms.
Improve the abnormal EEG.
In some cases, pediatric neurologists prescribe the seizure medication vigabatrin. Both drugs work well, but your child’s doctor will talk with you about which medicine may be the better choice for your child.
What is the outlook for children with infantile spasms?
Even if the infantile spasms stop, many children develop other kinds of epilepsy and have intellectual or other developmental disabilities later in life. If the treatment is prompt and successful, the outlook is brighter. Normal development is possible for those who were developing on track before the spasms started.
Most children with epilepsy live full, active lives that include school, friends, sports, and other activities. How much epilepsy interrupts a child’s life depends upon the kind of epilepsy, the success of treatment, and many other factors. Talk to your child’s doctor about what activities your child can do and encourage your child to participate.
As your child grows, help him become more independent. Driving, college, career, marriage, and raising a family are possible for the vast majority of people with epilepsy.
Tips to Encourage & Support a Child with Epilepsy:
Learn as much as you can about epilepsy.
Discuss epilepsy openly and honestly with your child and help your child talk openly and honestly with others about epilepsy.
Avoid saying things that could make your child feel like a problem or burden.
Praise your child’s success.
Encourage sports, hobbies, and other interests.
Help your child make friends.
Work with your child to explain epilepsy to friends, relatives, teachers, and others.
Continue family activities and traditions.
Make time for yourself without feeling guilty. Respite allows you to take care of yourself so that you are physically and mentally better able to care for your child.
Build a support network for you and your child. Resources are available through the Epilepsy Foundation, Parent to Parent-USA,Parent Training and Information Centers and Family Voices: Family-to-Family Health Information Centers.
Establish routines. Routines, schedules, and structure are what keep all busy families going.
Have your child take medication at the same time every day.
Involve your child in taking charge of her medications.
Make sure your child gets enough sleep to lower the risk of seizures.
Schedule a regular time for homework.
Infants & Toddlers with Epilepsy:
Seizures occur most frequently during the first few years of life, during a time when the brain is going through its most dramatic growth and changes. Recognizing and treating seizures as early as possible can help avoid learning and developmental delays. However, diagnosing seizures in infants can be difficult, as they cannot communicate what they are feeling after a seizure or during medical tests. Parents and caregivers observations are especially valuable and necessary for doctor’s to effectively treat infants and toddlers with epilepsy.
Finding child care for infants & toddlers with epilepsy:One of the biggest challenges parents of infants or toddlers with epilepsy can face is child care. Some child care centers may not admit children with epilepsy. Some refuse to give them emergency anti-seizure medication, even though they may be required to do so by the Americans with Disabilities Act. Your local Epilepsy Foundation can provide information about laws and resources in your area.
School-age Children with Epilepsy:
When children are older, having epilepsy can impact many parts of their lives, including how well they do in school, what sports they can play, and how they are treated by friends. The more parents can do to help their child lead an active, normal life, the better.
As with all school-age children, it is best to establish routines and set clear rules and limits. Sometimes, parents worry that upsetting a child with epilepsy can lead to a seizure. Usually, if you stay calm and your child is old enough to understand why you are stopping a certain behavior, it should not increase the risk of a seizure. Parents should talk to their child’s doctor if they have concerns about the best way to discipline.
Chronic Conditions and School
Your Right to Special Services
Section 504 of the Rehabilitation Act of 1973
Model Section 504 Plan for Students with Epilepsy
Teens with Epilepsy:
The preteen and early teen years are difficult for everyone. It is a time of great change, new challenges, and some dangerous temptations. When a child develops epilepsy, the risks, and insecurities that go along with this period are increased. It is important for parents to talk as openly as possible with their child about epilepsy and any other concerns.
Dating: This is a normal part of teen life – but it’s far from easy. A first date can be nerve-wracking under the best of circumstances, but epilepsy just adds another twist. Teens often worry about is how much and how soon they should tell their date about their epilepsy. They also worry about rejection. Here are some dating tips and ideas to share with your teen.
Puberty: Changing bodies affect how children look, feel, and think. Changes in hormones can also affect seizures and medication needs, especially for girls. Sometimes, teens need to change in the amount or type of medication they are taking based on behavioral changes, etc.
Social Life: Having friends and fitting in may seem to be all a teen thinks about. Being “different” in any way, such as having epilepsy, is not easy. While parents can’t make their child popular, they can help their son or daughter understand that having a few good friends is actually more important than having a lot of casual acquaintances. Teens should be encouraged to talk about epilepsy with their friends.
Substance Abuse: Alcohol and drugs are dangerous for all children, but even more so for children who are prone to seizures and may be taking medication for epilepsy. Parents should discuss the risks with their child. Then talk some more, and encourage your child’s doctor and others your child respects to talk to her, too. Even if it seems like your child is not paying attention, the message may eventually sink in. Discuss not only the risks, but also ways to get out of uncomfortable situations.
Responsibility: This is the time when teens are learning to be more independent and that their actions have consequences. If a teen gets epilepsy at this age, it could affect his independence for a while. As a teen begins to spend more time away from home, he will need to start taking on some new responsibilities. Parents should work with your child and doctor to figure out the best way to organize and monitor their condition when they are away from home. When teens learn to drive, parents will need to check their local state driving laws.
Transitioning teens with epilepsy to adult health care:Parents and medical professionals should work as a team to prepare children for their move into adulthood and help them learn to manage their health condition. This will include responsibilities such as:Keeping track of medicationsRefilling prescriptions Making doctor appointmentsAsking questions of the medical team, etc.
Resources for Explaining Epilepsy to Teachers & Friends:
Help others in your child’s life understand epilepsy. Make sure others know what to do if your child has a seizure. This will help keep your child safe, feel more comfortable, and do better in school. By talking openly and honestly about epilepsy, parents reduce some of the stigma and fear about it.
Epilepsy, also called seizure disorder, is the most common childhood brain disorder in the United States. Nearly 3 million Americans have epilepsy. About 450,000 of them are under 17 years old.
Epilepsy can cause repeated seizures, which are sudden surges of electrical activity in the brain. About two-thirds of all children with epilepsy outgrow their seizures by the time they are teenagers. For some, though, epilepsy may be a lifelong condition. It is important for parents to partner with their health care providers to help understand their child’s condition and treatment.
Understanding epilepsy and seizures
There are many different types of seizures. Some are very short, lasting only a few seconds, while others can last a few minutes. Some can cause uncontrollable jerking movements, while others cause them to be confused or stare blankly. The type of seizure a person has depends on where the seizure occurs in the brain and how much of the brain is involved.
Improvements in epilepsy treatment in recent years have made the condition more manageable. Many new anti-seizure medications are available and more are being tested. In addition to newer medications, alternative treatments such as surgical procedures, medical devices, and dietary therapies, are also available for children and teens who continue to have seizures while on medication.
How is epilepsy diagnosed?
Epilepsy is often diagnosed if a child or teen:
has had more than one seizure not directly caused by another medical condition, such as diabetes or a severe infection
has a high risk for additional seizures, based on their medical history or the results of medical tests
Any child without a known diagnosis of epilepsy who experiences a first-time seizure needs immediate emergency medical attention. They should also have a follow-up visit with their primary care pediatrician soon afterwards. If seizures happen again, they need to see a pediatric neurologist, a specialist who manages seizures and epilepsy.
Finding Answers About EpilepsyBy: Dylan Di Girolamo
I was officially diagnosed with epilepsy in 2017, though my seizures started years earlier. I would get these weird feelings of nausea and think I was about to throw up, but never did. As I got older, the nausea would start, and then I would forget where I was for 2 or 3 minutes. I was able to talk during these episodes, but I wouldn’t make any sense.
By the time I got to high school, I realized something wasn’t right. My doctor referred me to a neurologist, who ran tests but found nothing wrong. Deciding that these strange episodes may not be neurological, but psychological, they referred me to a psychologist.The episodes continued to get worse and more frequent, and I was starting to get really scared.The psychologist asked me to keep track of when my episodes happened and, if possible, get videos of them. My close friends and family members were able to record a couple of of them.One day, as I was leaving his office, I had a really scary incident. I was walking to the bus stop, but the next thing I knew I was in the back of a police car. I apparently had set my backpack at the bus stop and went to sit in the middle of the road. The officers thought I was trying to hurt myself.I tried to explain that I sometimes got these episodes when I wasn’t fully conscious and would do things that seemed strange. I gave them my psychologist’s number, and he backed me up. The police let me go.My psychologist, convinced something more than psychological was going on, talked with my neurologist. After a few months and lots more tests, I was officially given a diagnosis: epilepsy, and more specifically, focal seizures with impaired awareness.Unfortunately, medicine does not seem to fully stop my seizures. I am working with a team of doctors to explore other possible treatments. I also continue to meet with my psychologist to discuss ways to handle stress, since stressful weeks do seem to act as a trigger for me.During those weeks, I do my best to get plenty of sleep and eat properly so my body is not stressed out. I also try to find time for relaxing activities like going out to eat with friends, working out at the gym, and playing soccer.
Having epilepsy, I know I need to take extra precautions. But it won’t stop me from working toward my goals. I graduated from college and now teach elementary students. And I will continue to search for answers about epilepsy.Dylan Di Girolamo is a Young Adult Council member of the American Academy of Pediatrics National Coordinating Center for Epilepsy.
An epilepsy diagnosis varies for each child, but major steps in the process often include:
Detailed medical history: This may include questions about the mother’s pregnancy and delivery; whether there are any relatives with epilepsy; and whether your child has had a prior history of serious head injury, infections involving the brain or a prior history of seizures with fever (febrile seizures).
Detailed accounts of the seizure: Whoever was with your child when they had a seizure should talk with the doctor. Videos taken of your child during their seizure also can be helpful as well.
Physical exam: In addition to a regular physical examination, the doctor will check your child’s mental and neurologic function. This will include testing muscle strength and reflexes, for example, as well as senses and memory.
Blood tests to help identify other, underlying illnesses that could be causing seizures.
Computerized Axial Tomography (CAT) or CT Scan to help determine if a seizure was caused by a recent injury or illness affecting the nervous system.
Electroencephalogram (EEG) to help gauge how likely it is a seizure will happen again. An EEG can also help determine the type of seizure affecting your child, and whether it may be part of a certain epilepsy syndrome or pattern.
Magnetic Resonance Image (MRI) to get a picture of the brain. This is especially important if your child is having new seizures or seizures that may have started in a particular part of the brain.
Observation. In addition to the exam and tests, a period of observation can help determine whether a child has epilepsy.
If your child is diagnosed with epilepsy
If your child is diagnosed with epilepsy, it is important to keep working with their doctor to classify the type of seizures and epilepsy they have. That will help guide treatment options. Since seizures do not often happen in the doctor’s office, be sure to watch and track any unusual behavior and report it to their child’s doctor. At-home videos can be very helpful!
These resources from the Epilepsy Foundation can help with record-keeping:
Tips for Seizure Observation & Recording
Child Seizure Record Form
Seizure Description Form
Seizure Tracking Apps
How is epilepsy treated?
Treatment for epilepsy usually begins with medication. However, it is important to remember that epilepsy is a complex condition, and every child is different. Not every child responds to treatment in the same way, so there is no one “right treatment.”
There are many seizure-prevention medications, called anti-seizure drugs, and new ones in development. However, it sometimes takes a while to find the one that works best for each child.
These medications do not change the underlying cause of your child has seizures. They only treat the symptoms of epilepsy by reducing the frequency of seizures. The medication will not work properly until it reaches a certain level in the body, and that level has to be maintained by taking the medication regularly. For this reason, it is especially important to follow the doctor’s specific medication instructions.
Antiseizure medications may have side effects, though most are tolerated well without any side effects. Sleepiness is a very common side effect, but often may improve as a child’s body gets used to the medication.
Other more serious side effects can include changes in bone marrow or liver function, or serious rashes. It is important to talk to with your child’s doctor about possible side effects before starting a new anti-seizure medication. And if your child experiences side effects while on a medication it is important to let your doctor know so you can decide together whether the medication is right for your child.
If medication does not work, other options include:
Medical devices to prevent and control seizures (for example a vagal nerve stimulator (VNS), a responsive neurostimulator (RNS), or a deep brain stimulator (DBS))
How long does a child need to take medication for epilepsy?
If your child does not have a seizure for a few years while taking medication, it may be possible to stop taking it. This is different for every child. Your child should never stop taking medication unless recommended and closely supervised by their doctor.
Shared decision making for children with epilepsy
It’s best to work together with your child’s doctor to make decisions and choose tests and treatments, taking into account the potential risks and benefits of each option as well as your family’s preferences and values. Shared decision making is particularly important in epilepsy. This is because there is often no one right treatment, and possible risks and benefits of each option may affect each child differently.
Be sure to ask questions about different tests or treatments and share any special concerns or circumstances you may have. Examples of shared decision-making for epilepsy treatment include:
Choosing a medication based on the dosing schedule (taking a medication daily versus twice daily), available formulations (tablets, capsules, or liquids), or the need for laboratory monitoring.
Deciding whether or not to repeat imaging studies based on whether a child will need to be sedated, or when to schedule additional testing based on a child’s school schedule
Risks for other medical issues
Epilepsy can increase a child’s chance of having a mood or learning disorder. Headaches and other physical conditions are also common. It is important for parents to know about possible related conditions, also called “co-morbidities,” and talk to their child’s doctor about any concerns.