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Our child's name is Mila. My husband and I found out Mila was diagnose with Epilepsy when she was 5 years old. It was a normal day for us when we saw her first seizure and did not know what to do.

With the help of health professionals, teachers and advocates, we were able to understand and care for our child. It has not been an easy journey but we love our child. We still want them to live a full, safe and wonderful life.

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Here you'll find more information you can learn about Epilepsy and how you can help others.

Great resources for friends and family:
https://www.henryford.com/blog/2016/05/children-epilepsy-10-tips-parents-caregivers

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Parents of children with epilepsy describe many challenges that confront their children within the school system. In our experience, school personnel may have a basic understanding of seizures and related safety concerns, but are less well informed about how seizures and the child's learning, emotional, behavioural and social adjustment are related. For example, genuine concern over a child's physical safety in the schoolyard may supercede that of concern over his or her social integration. Furthermore, learning or behavioural issues specifically associated with epilepsy may not be clearly understood or are viewed as unrelated to the epilepsy, leading to inappropriate classroom management techniques, placement or inadequate support outlined in the individualized educational plan (IEP). The following paper provides a brief overview of the information we provide in a letter to schools (at the request of parents). In addition to this general information, we include in this letter specific information concerning the child: seizures [types, frequency, duration, emergency management, antiepileptic drugs (AEDs) ]; cognitive/psychological profile (if available); details of the child's emotional or behavioural status and how problem areas might relate to an underlying brain abnormality, seizures or AED. Finally, we provide some suggestions to include in the child's IEP that will optimize academic potential, as well as promote emotional well-being and social integration within the school setting.
Overview
Epilepsy is a disorder that involves a constellation of symptoms that vary in frequency and intensity from child to child. Of those children with epilepsy, approximately 25% continue to experience poor seizure control even with anti-epileptic drug therapy.1 In addition, it is well documented that epilepsy in children is associated with problems in multiple areas, including academic achievement, behavioural and emotional adjustment, and social competence.2-5 Even when seizures are well controlled with antiepileptic medications, these problems may persist6 because of abnormal brain formation or function, continuing epileptic activity in the brain (without symptoms), or side-effects from antiepileptic medications.
Learning/Academic Issues
Although overall intellectual ability in children with epilepsy is comparable to the normal childhood population7 they are at greater risk for learning problems and academic under achievement8. Even in those with normal intelligence, reports of deficits in specific areas related to thinking and learning abilities are common, particularly in the areas of attention and concentration, memory, organizational skills and academic achievement.9,10 Indeed, many children do not fit the typical school definition of learning disabilities, as their reading, spelling and math skills may be appropriately developed. Nonetheless, they do have significant challenges for learning due to the particular areas of weakness described above.

While some children with epilepsy have global learning problems (developmental delay) caused by extensive brain abnormalities, more often these children have a variety of specific learning problems that can be attributed to a focal brain abnormality. For example, children who have a scar in the middle part of the temporal lobe (mesial temporal sclerosis) may have permanent short term auditory or visual memory problems. Other factors such as seizures, AEDs and fatigue may also contribute to transitory learning problems. For example, seizures and post-seizure fatigue or confusion (post ictal state) can disrupt learning for minutes or hours. Although it is well known that visible seizures interrupt learning, there is some evidence that epileptiform discharges which occur in the brain between seizures (interictal activity) may also disrupt learning. This is referred to as Transient Cognitive Impairment (TCI).11 Finally, in our study of a group of children with poorly controlled epilepsy, children themselves frequently cited fatigue as an important factor that decreased their availability to learn in school12. It is likely that these transitory disruptions in learning account for parent and teacher reports that academic performance in these often children fluctuates from day-to-day. Teaching and learning strategies that take into account the dynamic learning profile of these children, for example intensive programmes that utilize repetitive instruction techniques, are critical to the child's academic success.
Emotional and Behavioural Issues
Emotional and behavioural difficulties are also disproportionately high in children with epilepsy. For example, psychiatric disorders were identified in 34.6% of children with seizures compared to 6.6% in the general population and 11.6% in children with other chronic illnesses.1 Some of the more common emotional and behavioural difficulties seen in these children include increased anxiety, depression, irritability, hyperactivity, aggression, and in some cases, irrational periods of rage. In a more recent study 3 of behaviour in children in the 6 months before a first recognized seizure, 24.6 % of the children had higher than expected rates of behavioural problems (particularly attention difficulties). This finding suggests that epilepsy is a more complex disorder that may manifest itself with behavioural disturbances, as well as seizures.

In a small proportion of these children, verbal or behavioural aggression may occur spontaneously with minimal or no provocation. There is a paucity of research exploring intermittent spontaneous aggression in children with epilepsy and mechanisms underlying aggression in these children are poorly understood. Aicardi 13 proposed one causal mechanism for behavioural disturbances by suggesting that epileptiform discharges in the brain may produce disorganization of brain function that then affects behaviour. The authors of another paper14 suggest that behavioural aggression may be result from certain abnormal regions of the brain producing epileptic activity or may be aggravated by the effects of antiepileptic drug therapy.

Many parents in our clinical setting describe a variety of scenarios in which they have observed changes in their child's mood accompanied by increased aggression. The most frequently cited complaint is that introduction or high doses of certain antiepileptic medications coincide with behavioural changes including irritability, verbal, or even physical aggression. For example, this might take the form of a younger child hitting other children. If the behavioral side effects are intolerable, reducing or discontinuing the antiepileptic medication while adding another medication may be necessary. Second, behavioral changes, such as increased irritability and verbal or physical aggression, often herald the onset of a seizure. These behavioral changes can occur minutes to days before a seizure. During this period, certain triggers (stimuli) may further irritate the child, producing increased frustration or aggression. Therefore, it may be prudent to reduce over stimulation in the school setting during this period, for example decreasing academic workload. The third scenario comprises a smaller group of children who experience sudden outbursts of verbal or physical aggression. These children present special challenges to the family, school and health professionals.

Characteristically, the episode of aggressive behaviour may appear with minimal or no provocation and can go on for some time. Our clinical observations, as well as conversations with children, parents, and teachers suggest a trajectory for episodic verbal or physical aggression. It seems that the child perceives a certain situation as noxious. For example, some children with epilepsy may have very sensitive hearing. Loud noises or a confusing number of noises in the classroom might precipitate explosive behaviour. Once the trigger stimulates an angry feeling, it is difficult for these children to 'put on the brakes'. It is not that they 'won't' control their aggression, rather, children tell us that they 'cannot' control the aggressive outbursts. Parents report that children often experience remorse following an aggressive outburst. They frequently berate themselves, for example, saying, "I'm a bad person". Interventions that focus on immediately removing the stimulus/trigger, or removing the child from the stimulus, can sometimes diffuse their anger and outburst. It is our experience that these children do not respond to standard behavioural management strategies or restraint alone. Rather a combination of strategies, including assessment and follow-up by psychiatry, and interventions such as psychotropic medications and/or intensive behavioural therapy, may be warranted.
Social Issues
Participation in physical activities and social engagement with peers is particularly important during childhood development. Yet in our conversations with families of children with epilepsy, we frequently hear that seizures, and the associated secondary problems, often exclude children from full participation in academic, recreational and social experiences. Concern for the child's safety may lead to restriction of normal school activities, which most children take for granted. This increases the child's sense of social isolation. Isolation from these important social learning experiences further enhances a negative perception of self, informing the child, that he or she is 'not normal' at time in life when being 'normal', not 'different' is highly valued. It is important that parents advocate for extra support in the school to facilitate the child's participation in school activities (e.g. playground, gym) that facilitate interactions with other children. Involvement in school activities is paramount to fostering a sense of emotional well-being well as, promoting social and physical development.

In practical terms, the stigma associated with epilepsy, and the insensitivity of others, are also stressors that affect the emotional and adaptive behavioural responses in these children. It is our experience that many of the children with whom we come in contact are excluded from activities with classmates; teased and bullied; and sometimes suspended from school because of behavioural issues. These factors further reinforce the child's negative view of him/herself and alienate the child from the usual social and learning experiences that promote self-esteem and normal social development.
Conclusion
In summary, epilepsy is a complex disorder that has an impact on many aspects of a child's development and functioning. As a result, many of these children are at increased risk for unsuccessful school experiences; difficulties in social engagement with peers; inadequate social-skills; and poor self-esteem. It is, therefore, important that a partnership between educators, family members, and health care providers be instituted so that a plan for academic success as well as a plan for safety, management of emotional or behavioural dysregulation and active social integration be developed and evaluated on an ongoing basis.

References:

1. Hauser WA & Hesdorffer DC. Remission, intractability, mortality, and comorbidity of seizures. In Wyllie E, editor. The treatment of epilepsy: principles and practice. Philidelphia. PA: Lippincott Williams and Wilkins, 2001. pp. 139-145.

2. Bourgeois, B. F. D., Prensky, A. L., Palkes, H. S., Talent, B. K., & Busch, S. G. (). Intelligence in epilepsy: A prospective study in children. Annals of Neurology, 1983, 14: 438-444.

3. Austin, J. K., Harezlak, J., Dunn, D. W., Huster, G. A., Rose, D. F., & Ambrosius, W. T. Behavior problems in children before first recognized seizures. Pediatrics, 2001, 107(1):115-122.

4. Hoare P. The development of psychiatric disturbance among school children with epilepsy. Dev Med Child Neurol 1984, 26: 23-4.

5. Seidenberg M, Beck N, Geisser M, Giordani B, Sackellares JC, Berent S et al. Academic achievement of children with epilepsy. Epilepsia 1986, 27: 753-759.

6. Sillanpaa M., Jalava M, Kaeva P, Shinnar S, Long-term prognosis of seizures with onset in childhood, N Engl J Med 1998, l338:1715-22

7. Rutter M. Graham P and Yule WA. Neuropsychiatric Study in Childhood. Philadelphia: J.B. Lippincott, 1970.

8. Aldenkamp AP Learning disabilities in children with epilepsy. In: A.P. Aldenkamp, W.C.J. Alpharts, H. Meinardi, & G. Stores (Eds.). Education and epilepsy: Proceedings of an international workshop on education and epilepsy, 1987, 21-37. Berwyn, PA: Swets North America.

9. Smith ML, Elliott IM, Lach L. Cognitive skills in children with intractable epilepsy: Comparison of surgical and non-surgical candidates. Epilepsia 2002, 43:631-7

10. Williams J. Learning and behavior in children with epilepsy. Epilepsy & Behavior 2003, 4(2):107-111

11. Rugland AL. 'Subclinical' Epileptogenic Activity. In: Sillanpaa M, Johannessen SI, Blennow G, and Dam M. eds. Paediatric Epilepsy. Wrightson Biomedical Publishing Ltd, 1990, pp. 217-224

12. Elliott I, Lach L, Smith ML. Impact of intractable epilepsy on quality of life in children: child, adolescent and parent pre-surgical perspectives. Epilepsia 1999, 40 (Suppl 7): 112.

13. Aicardi J. Epilepsy as a non-paroxysmal disorder. Acta Neuropediatr1996, 2:249-257

14. Juhasz C, Behen ME, Muzik O, Chugani DC, Chugani HT. Bilateral Medial Prefrontal and Temporal Neocortical Hypometabolism in Children with Epilepsy and Aggression. Epilepsia, 2001, 42(8):991-1001

Reprinted with permission from Epilepsy Canada. Lumina, Fall 2004;4-6.

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Epilepsy: Impact on the Life of the Child

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Parents of children with epilepsy describe many challenges that confront their children within the school system. In our experience, school personnel may have a basic understanding of seizures and related safety concerns, but are less well informed about how seizures and the child's learning, emotional, behavioural and social adjustment are related.

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Do you know what to do in a case of a Seizure? Here's more information on the types of Seizures and what to do.

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From grand mal to absence seizures, they all look different. Here's what you need to know.

If you have no previous interaction with epilepsy, you may be like many people and picture all seizures as someone falling to the ground in convulsions. The person probably passes out and hopefully feels no pain during the whole traumatic process to the onlooker. This type of seizure is known as grand mal, or a tonic-clonic seizure.

But there are many other kinds.

I was about seven years old when my grandma told me how she went to the store and waited in line. A man in front of her fell to the ground in convulsions. She is a proactive lady, so right away "assisted" him by putting a brush into his mouth so he wouldn't choke or bite his tongue. She was also holding his head tight on her lap for him not to hit it around the floor.

If you know the proper response to seizures, please excuse my grandmother. She didn't know any better.

At the end of the story, the man was alright. Spaced out, dazed, and confused--but he got up and went about his day. No one called an ambulance. (This episode occurred back in Russia.)

Our brain's function can be recorded as a wave pattern, and when there is an abrupt change in the brain's regular activity, a seizure may occur. People might have a seizure or two in their lifetime but will not be diagnosed with epilepsy until they had more than two occurrences. A person with epilepsy can have multiple seizures a day and various types of seizures.

The brain consists of two hemispheres, the left hemisphere and right. Seizures (or "a computer glitch") can happen in either hemisphere at a time or across both. When the seizure occurs in just one part of the brain, it is known as a focal seizure. When a glitch occurs across the whole brain, it is known as a generalized seizure.

When a whole brain is affected:

Absence seizure: start staring into space, space out, blank out, start rapidly blinking

Atonic seizure: drop down due to relaxation in muscles

myoclonic seizure: display short jerking in parts of the body

Clonic seizure: display periodic shaking or jerking of the body

And of course, there can be a combination of these forms of seizures, such as a tonic-clonic (referring to the loss of consciousness, falling to the ground, and jerking of the body).

When a part of the brain is affected, these events are characterized by a change of sensation within a person, confusion, unresponsiveness, or repetitive, involuntary movement of limbs.

If you have identified someone with having a seizure, it is vital to respond with appropriate "Seizure First Aid."

First, find out if the person had a seizure before. If not, call the ambulance.

If the answer is yes, then remember that not all seizures are an emergency. If it lasts less than 5 min, it's possible that no emergency medical attention is required. You should still follow the seizure response protocol established by the person's physician.

If the 5-minute mark has passed and the seizure continues, call an ambulance anyway. Also, get the ambulance if any of the following are true:

The person has difficulty breathing or waking after the seizure.

The person has another seizure soon after the first one.

The person is hurt during the seizure.

The seizure happens in water.

The person has a health condition like diabetes, heart disease, or is pregnant

Regardless of whether the ambulance is needed or not, here are general steps to follow while watching over the person having a seizure:

Stay with the person until the seizure ends, and he or she is fully awake. After it ends, help the person sit in a safe place. Once they are alert and able to communicate, tell them what happened in straightforward terms.

Comfort the person and speak calmly.

Keep yourself and other people calm.

Offer to call a taxi or another person to make sure the person gets home safely.

This article has been written with the guidance from CDC.

For an inspirational true story of one exceptional child's journey with epilepsy, read Ashley's story here. It is also featured in the book More Than a Diagnosis alongside other moving portraits of resilliance and possibility. Consider picking up a copy for the holidays here, and be warmed by the fact that 100% of the proceeds go back to The Brain Possible.

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Epilepsy 101: What Are the Main Types of Seizures?

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From grand mal to absence seizures, they all look different. Here's what you need to know. If you have no previous interaction with epilepsy, you may be like many people and picture all seizures as someone falling to the ground in convulsions.

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                       Perspective of the Parents

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                       Perspective of the Parents

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Having our first child has been a blessing. We love being parents. Unfortunately, it's not always rainbows. We have been scared many times when our child has had seizures but we try to learn everyday with our exceptional child. Our duties has been to carry on with the most positive attitude we can. The way we feel about our child can never be explained in simple terms because they have taught us many things we never imagined we needed to relearn and learn all at the same time. Patience is key. Our child is strong, funny and amazing, she is different but also the same as any other child. The way we like to describe her condition is that she is unique and able.

We have been fortunate to receive the support of neurologist and epileptology's from Children Hospital who have directed us to the Epilepsy Foundation Los Angeles. It has not been easy financially because services have not always been fully covered. We've continue to look for support group, foundations and people who share our story and have been kind to help. Never give up! There's always help out there.

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It's a neurological disorder that appears in boys and girls as early as 10 years old and before 55 years old. It's surges of electrical activity in the brain that cause seizure. It cannot be cured but it can be treated with many types of plans and medication to ensure quality of life.

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                             Mila's Epilepsy Services

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                             Mila's Epilepsy Services

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-Neurological exams
-Blood tests
-Electroencephalogram (EEG)
-Therapy (Vagus nerve stimulation)
-Medication

work along side with your doctor to see what's the best long term plan for your child.

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                 How to Support and Advocate

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                 How to Support and Advocate

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- Stay Positive
-Never Stop Learning
-Communicate your needs and the needs of your child.
-Encourage, Play and Enjoy. We only get one life and we need to get the most of it.
-Inform family, friends and teachers about seizures and practice safety.
-Give the child the best support you can
-Create a safe environment

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There are many kinds of seizures and they all come with many levels of severity and different warning signs.
Most Common Signs:

Twitching Movements

Periods of rapid eye blinking

Stiffening of the body and extremities

Shallow or accelerated breathing, or breathing stops

Loss of bowel or bladder control

Not responding to noise or words

Appearing hazy or confused

Loss of consciousness

Excessive nodding or head swaying

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                     Epilepsy in the Classroom

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                     Epilepsy in the Classroom

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DO NOT PANIC. REMAIN CALM.

-Deescalate the situation by preventing other students to panic. Remain calm have others use inside voices
-Avoid having any items near them that might cause any physical harm.
-Do not restrict any movement or hold them tight.
-Comfort the student and reassure that it's going to be okay.
-Wait a few minutes to ensure there aren't other seizures coming
-Do not offer any food or water until they are speaking to you consciously
-Communicate with parents and nurse

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https://www.epilepsy.com/events/2022/parentscaregivers-support-group
Don't forget that there is always help even when you feel the loneliest.

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This group supports parents and caregivers and provides a place to share experiences, provide encouragement, and provide support for each other through this epilepsy journey.

This group meets via Zoom on the 3rd Thursday of each month at 7:00 pm (MST) and will have guest speakers throughout the year to share the latest information about epilepsy and seizures.

The goal is to help parents/caregivers help their children with seizures and maintain a loving family environment for all its members.
All participants must register prior to attending. An email will be sent with the Zoom login information.

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This group supports parents and caregivers and provides a place to share experiences, provide encouragement, and provide support for each other through this epilepsy journey. This group meets via Zoom on the 3rd Thursday of each month at 7:00 pm (MST) and will have guest speakers throughout the year to share the latest information about epilepsy and seizures.