A Guide To Seizures For Families Of Children With Increased Risk For Seizures

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1 About Sunny Hill Sunny Hill Health Centre for Children is a provincial facility offering specialized services to children with disabilities, their families and communities throughout British Columbia. Using a family-centred approach, Sunny Hill helps promote the healthy development of children and youth by supporting families and community service providers in their efforts. It is also a resource for educational services and information about disabilities. Services are delivered close to home in a child's community, or on site at Sunny Hill, located in Vancouver. How To Contact Us pìååó=eáää=eé~äíü=`éåíêé=cçê=`üáäçêéå 3644 Slocan Street, Vancouver, BC V5M 3E8 Phone: (604) Fax: (604) ïïïkäååüáäçêéåëkå~ mêçãçíáåö=_éííéê=eé~äíü=ñçê=`üáäçêéå=ïáíü=aáë~äáäáíáéë= íüêçìöü=`äáåáå~ä=péêîáåéëi=bçìå~íáçå=~åç=oéëé~êåü Rev. Ed. Aug 2007 BC Children s Hospital, an Agency of the Provincial Health Services Authority SH#15 A Guide To Seizures For Families Of Children With Increased Risk For Seizures

2 7. When should I call for help? Please refer to the first aid pullout in the centre of your booklet. You should also call for emergency help if: the seizure occurred while your child was in the water; this is your child s first seizure and he or she does not appear well to you; there was any injury to your child; your child is diabetic, pregnant, or both; your child cannot be awoken or does not respond to stimulus after the seizure; or, your child vomits continuously after the seizure. 8. When my child is having a seizure, what should I say to reassure him or her? Tell the child that, you are having a little seizure and you are safe. I m right by your side to help you. 9. When do I tell my child's doctor about a seizure? Talk to your doctor if you are worried about your child, if your child has not had a seizure before, or if your child has had seizures before and they are changing now in frequency (# of times), length or type. 10. Why should I document my child's seizures? It provides a record to share with your doctor or nurse. It also helps you see if there are any changes in your child s seizure activity. Resources: BC Epilepsy website Family Resource Library at BC Children s Hospital Andreassen, D. (January, 2000). The Management Of Seizures. A Teaching Tool For The Community: Putting The Pieces Together. The Vancouver/Richmond Health Board. In School Support/Nursing Support Services. 15

3 Frequently Asked Questions: 1. Why is my child on medication if he or she has not had any seizures? Since a child is at an increased risk of having a seizure after a brain injury most especially during the intensive care time, the medication is used to help decrease the chance of this occurring. The medication is usually soon stopped in these circumstances. 2. Does Ativan stop the person from having a seizure? Ativan controls seizures. It helps decrease the frequency and the severity of seizures. It does not cure them. 3. When should I give the Ativan? The right time to give this medication is when: (1) a generalized seizure lasts longer than 5 minutes, or (2) a cluster of seizures goes on for more than 5 minutes. 4. Why do we wait 5 minutes before giving Ativan? Waiting helps us see if there s a change in the seizure activity, as many generalized seizures will stop on their own within 5 minutes. 5. How can I tell the difference between an absence seizure and a child being tired or tuning out? During an absence seizure the child does not respond when spoken to or touched, as there is a change in his or her awareness level. 6. What do I need to take when I'm planning an outing with my child? What if I'm not near a phone? Remember to take your child s medications, a phone, a watch, and a number to reach in case you need help. It is also important to inform someone at home of where you are going. Who Is This Booklet For? This booklet has been developed for the families of children who are at an increased risk of having, or will have had, a seizure as a result of a brain injury, or other causes like infection or poisoning. It is meant to give basic information in order to increase families comfort and understanding of seizures. In the event that your child has a seizure, it is important for you to know how to manage the seizure safely in all kinds of situations or environments. The booklet has three sections: 1. Information About Seizures 2. How to Manage Seizures Safely 3. Frequently Asked Questions (f.a.q.s) In the booklet you will find information in boxes that highlights specific situations. Some information will not apply to your child. If the information in the boxes relates to your situation, it is important to review it. Some of the information in this booklet was adapted from information on the bc Epilepsy website (additional information is available at this site) and from the Family Resource Library at BC Children's Hospital Please note that this booklet is not meant to be your only resource on seizure management. We encourage you to have conversations with the physicians or nurses who play a role in your child's care. Your child's team at Sunny Hill welcomes the opportunity to answer any questions you may have. 14 3

4 Information about Seizures What Is A Seizure? A seizure is a brief, temporary disturbance of brain activity. Brain cells communicate with each other through tiny bursts of electrical impulses. When these electrical impulses in the brain misfire, a seizure may result. Is A Seizure Like Epilepsy? Epilepsy is a condition of the brain. It is not a disease, but is referred to as a seizure disorder. Someone who has multiple seizures is said to have epilepsy. One in 200 persons has had a seizure disorder, and the majority of them lead normal lives. Medications Most people s seizures can be controlled successfully with medications known as anti-convulsant drugs. On other occasions these drugs are given to prevent seizures. Anticonvulsant drugs may be given to children who: Have never had a seizure, but are at risk of having a seizure; after an acquired brain injury, for example, these are only used during the intensive care phase of treatment Have had a seizure Have a seizure disorder Because medications may not be able to control all seizures, it is important to know what to do to keep your child safe when a seizure occurs. If your child has generalized motor seizures, the drugs most often prescribed are: Oral/sublingual Ativan, or Rectal Valium Every child who has had a brain injury leaves Sunny Hill with an Ativan kit. A specific plan will be developed for your child if he or she is on these medications. Your physician will tell you if your child needs medication, and what dosage. Your nurse will explain how and when to give the medication, and what side effects to look for. 4 13

5 A Sample Seizure Record: FOR (child s name): Date of seizure Time of seizure Start: End: Where did the seizure happen? (school, home etc.): What was the child doing before the seizure? Was the child ill? 3 Y 3 N Did the child have a fever? 3 Y 3 N Were there any warning signs? (describe) What did the seizure look like? 3 Body stiffened 3 Cried out 3 Turned blue (lips, etc.) 3 Body jerking 3 Vomited 3 Became pale 3 Body limp 3 Eyes open 3 Flushed skin 3 Fell to ground 3 Eyes rolling back 3 Unaware of environment Body parts involved (arms, legs etc.) Did the child wet? 3 Y 3 N Did the child soil? 3 Y 3 N Did the child have difficulty breathing: 3 before 3 during 3 after What was the child like after the seizure? 3 Disoriented 3 Angry 3 Confused 3 Sleepy 3 Weakened Did the child sleep after the seizure? 3 Y 3 N For how long? Any Injuries? Describe first aid given: Additional comments: Recorded by: What Does A Seizure Look Like? When a person has a seizure, he or she cannot control his or her behaviour. Seizures usually only last a few seconds, but may last minutes or longer. A person having a seizure may: Stare briefly Have a change of awareness, such as becoming confused, drowsy or unconscious Make unusual body movements Have repetitive movements (sometimes referred to as a convulsion) Breathe heavily Have eyes that flutter or roll backward Straighten an arm or a leg Cry out suddenly A person having a seizure may show one or more of the above, in no set order. 12 5

6 Are There Different Types Of Seizures? Yes. There are two types of seizures partial and generalized. Partial Seizures: Partial Seizures are the most common type of seizure. They are called partial seizures because they occur in only part of the brain. As a result, the seizure affects only parts of the body, such as one arm or one leg. Your child will not go unconscious if he or she has a partial seizure, but may have a decrease in awareness or consciousness. Generalized Seizures: Generalized Seizures occur in the whole brain. There are 2 types of generalized seizures. Absence is the name of the most common type of generalized seizure. In the past it was called petit mal. This type of seizure is not commonly found following an acquired brain injury. In the absence generalized seizure, your child s eyes may blink over and over again or your child may appear to be staring off into space. This seizure begins and ends abruptly, and typically will only last for a few seconds. Tonic-clonic seizures are the second type of generalized seizure. In the past they were called grand mal. This is the more common for of seizure following an acquired brain injury. Your child becomes stiff (tonic phase) and then starts to jerk (clonic phase). Your child will not be aware that the seizure is happening, and may become unconscious very suddenly. This seizure may last for a few minutes. What Should I Observe And Document When My Child Is Having A Seizure? You should be observing what happens during and after the seizure. Document your observations as soon as you can. Documenting is important because it provides a record for you to share with your doctor/nurse. It also helps you to see if there are any changes in your child's seizure activity. A sample seizure record is provided for you on the next page. Record when the seizure starts and ends, and if it starts again. Observe and record your child s behaviour: Is there a change in your child s facial expression? Is there a change in your child s colour? Temperature? What type of movement is there for example, is there movement all over, in one arm only, or in another limb or limbs? Did your child lose bowel or bladder control? After the seizure stops: 1. Observe: Your child s level of awareness. Is he or she drowsy? Confused? Disoriented? Whether there is any change in your child s ability to move a limb. Is there weakness? Is speech slurred? (These conditions are usually just temporary and will disappear quickly.) 2.Record any medications that were given and the times you gave them. 6 11

7 Special Situations: Children In Wheelchairs: If your child is not having trouble breathing and is not in danger of injury, he or she may stay in the wheelchair. To make sure there is no danger of injury, protect your child from hitting objects on the tray, or from hitting part of the wheelchair. You may want to loosen any chest or neck straps to make your child comfortable. If your child is having trouble breathing: Take him or her out of the chair and position the child on one side on the floor or ground. This keeps the airway clear. If there is mucous, it can drain out the side of your child s mouth. If The Seizure Happens In Water: Support the child s head above water. Take the child out of the water as quickly as you can. You may need help to do this safely. Once out of the water, turn the child on his or her side. Begin artificial respiration if the child is not breathing. Go to the doctor if you are concerned that the child may have water or saliva in his or her lungs. Keep the child out of the water for the rest of the day. Managing Seizures Safely: What Should I Do If My Child Has A Seizure? Take a deep breath and remain calm. You do not need to stop a seizure once it has started. Your role is to stay with your child, keep your child safe and to be a comfort to your child. Most seizures will stop on their own. The most important thing that you can do is to keep your child safe during the seizure. This could include removing any sharp or heavy objects that are near by, taking off eye glasses and making sure they are not in danger. It is also important to be aware of additional seizure first aid measures. On the following two pages, you'll find a pull-out on seizure first aid. It is important to tell lifeguards and swimming instructors that your child has seizures. For recreational swimming, a child known to have had a past seizure or seizures must not swim without a buddy who can take responsibility, in case of need. 10 7

8 Seizure First Aid: Time The Seizure: Knowing how long your child has been having a seizure is important, especially if a generalized seizure lasts, or a series of seizures last, longer than 5 minutes. Use Your Ativan Kit: Follow the physician's prescription, and use the kit in the way you were taught by your child's nurse. Observe The Seizure: It is very important to be observant, so you can relay important details to medical personnel, if required. Note when the seizure started, how long it took. Also take note of what your child looked like during the seizure. Later you may want to think about whether there were any events that may have brought on the seizure, such as a recent illness. Make Your Child Comfortable: When your child is physically safe, you can make your child comfortable. This may include having your child lie on the floor and loosening any tight clothing. Wait until your child is relaxed and not having a convulsion, so that you do not get injured. Remember, a person having a seizure does not have control over his or her body and behaviour at that time. If your child is on the floor, he or she will be most comfortable and safest lying on his or her side, in the drainage position. This will help keep the airway clear; if there is mucous, it can drain out the side of your child's mouth. Talk To Your Child: You child may not be aware of what has happened and will need reassurance that he or she is safe. Stay with your child. Your comforting voice will help create a feeling of safety. Talk in a slow, low voice to calm yourself and your child. Do Not Put Anything In Your Child s Mouth: It is physically impossible to swallow your tongue, but the child may choke if things are placed in his or her mouth. The only exception is if sublingual Ativan has been prescribed. Do Not Restrict Movement: You and your child may be injured if you try to restrict movement. When the seizure is over, allow your child to rest. When he or she feels able, your child can go back to a comfortable level of activity. When To Call Call and ask for an ambulance if: your child is having problems breathing the seizure lasts longer than 5 minutes there is one seizure after another for longer than 15 minutes your child remains unresponsive or does not regain consciousness soon after the seizure ends. When To Contact Your Family Doctor Call your family Doctor if: you are worried about your child your child has not had a seizure before your child has had seizures before and they are changing now in frequency, length, or type. 8 9