# OMS Manual/Chapter 17

CHAPTER 17 - EFFECTS OF OMS ON BEHAVIOR

## Description

To say that the behavior problems resulting from active OMS or injury due to OMS are challenging, is an understatement. The behavioral and psychiatric issues associated with OMS can be extremely difficult to treat successfully with conventional methods and medications. Persistent severe behavior problems as well as serious psychiatric issues are often a lasting effect of OMS; they should be anticipated and steps should be taken to ensure the proper supports and services are in place.
OMS in its acute phase is known to cause severe changes in demeanor and overall mood of once happy and independent children. Many parents report significant changes in behavior in the weeks leading up to the physical symptoms of OMS manifesting. These changes often appear in the form of exaggerated temper tantrums, and mistaken as being part of a developmental phase.
After the physical symptoms (ataxia, myoclonus, opsoclonus, and tremor) begin; screaming, flailing, and sometimes biting and pinching, in most cases is constant. After treatment begins and function is regained behaviors may begin to ease up. In this stage, interrupted sleep (a common symptom of active disease) can also contribute to behavioral disturbance. Steroid treatment can contribute to behavior problems specifically rage. Some report that in the days following an IVIg infusion there can be an increase in behavior problems specifically rage and high pitched screaming.

## Behavioral Issues that may be Encountered

Children with OMS may exhibit symptoms of the following specific behavioral or psychiatric issues:
* ADHD:
May be hyperactive or inattentive or impulsive.
* Oppositional and defiant behavior:
Do the opposite of what is asked or expected.
* Obsessive Compulsive Disorder (OCD):
May have obsessions or compulsions. Fixate on doing or having something that is impossible. Arrange objects in a certain order or a certain way. Have ritualistic behaviors in which a series of things must occur in a certain order at a certain time. Ex: Multiple hugs and kisses, specific story, several specific stuffed animals, and certain lights on before bed time. If the ritual isn’t properly completed, the child may feel the need to do it again, or have a total meltdown.
* Violent behavior:
Lash out physically against loved ones, even when aware that doing so is dangerous and wrong.
* Bi-Polar Disorder or Mood Disorder:
Moods change significantly in short periods of time often without a clear reason.
* Separation Anxiety:
The child has a meltdown or is incredibly fearful any time you attempt to leave him anywhere or with anyone. He or she may follow you around like a shadow nearly all the time.
* Psychosis:
Visual or auditory hallucinations and delusional thoughts. There have been reports of older children with OMS hearing voices and having visual hallucinations.
* Rage Attacks:
Prolonged emotional meltdowns which are generally unprovoked (though can seem to be triggered by the child not getting his or her way). They can include high-pitched screaming, back arching and flailing (with little or no regard for personal safety), and can last for hours. Once a rage attack begins there is rarely anything that can be done to end it or soothe the child, it almost has to “burn itself out”. Children will often feel badly about how they behaved after the rage has ended. Some children have reported not being able to remember anything that occurred during the rage attack.

## What is within my child’s control, what isn’t, and how to fix it:

First and foremost, discuss any significant behavior problems with your child’s treating physician. If they share your concerns they will likely refer your child to be seen by a child psychologist or therapist.
Children with OMS can look and act for the most part like normal kids. It’s often very difficult for parents and especially others to figure out which behaviors are willful and intentionally manipulative and which are totally out of a child’s control. Parents may feel trapped in an impossible situation where they feel the need to be firm and teach the child how to behave with traditional methods; and having behavioral expectations that they know their children cannot meet, essentially setting them up for failure.
To change behavior it is essential to have an assessment of the difficulties that may lie behind the behavior. Is there a lack of insight? Is there disinhibition or poor emotional control? Is there a memory problem or does your child have a problem with visual or auditory perception (your child’s interpretation of what is seen or heard)?
In this instance a neuropsychiatric assessment (neuropsych eval) is an invaluable tool. A neuropsych eval is an assessment of a person’s cognition, behavior, and mental status. It measures memory, ability to learn, intelligence, executive function, and language. When you have some understanding of how well your child’s brain is functioning and where the problems are, you can begin to understand what is going on with their behavior and how to help them.
Most children can learn to behave in an acceptable way because it results in rewarding consequences. Children effected by OMS may have lost the cognitive skills needed to respond in this way. In order to respond to consequences and rewards the child must be able to:
* Understand cause and effect.
* Consistently remember what they have to do to avoid punishment or earn rewards.
* Understand that good behavior may be rewarded at a later time and be patient.
* Remember the rules and use them in different situations.
* Control their behavior at will in different situations.
If your child demonstrates an understanding of the things listed above and the results of their neuropsych eval reflect that their brain is functioning at a developmentally appropriate level, than it may be that behavior problems are the result of an “emotional” (possibly the result of the trauma of becoming sick and everything that has happened as a result) origin. In this case, it may be useful to obtain a referral to a child psychologist or therapist for cognitive behavioral therapy (CBT). CBT is based on the idea that our thoughts cause our feelings and emotions and that if we change our thoughts we can change the way we feel and behave.
If your child cannot do the things listed above and the results of their most recent neuopsych eval reveal significant delays or problems in any area of brain function, the origin of the behavior problems are likely “organic” (either the result of active disease or injury to the brain). Injury to the brain can affect your child’s ability to control their behavior and their awareness of what is acceptable or appropriate at any given time. Speaking with you, in a quiet situation, they may be able to tell you exactly how they should behave, but be incapable of putting that into practice in ‘real life’ circumstances. After an episode of inappropriate behavior, they may be upset about what they have done, but they still can’t help doing it again. Their behavior sometimes ‘winds up’ in a spiral; it is as if the thermostat is missing. CBT may do little or nothing to help in this situation; a better approach may be what is called “Antecedent Behavior Management”.
Antecedent Behavior Management is a positive, proactive approach, based on the idea of preventing inappropriate behavior as opposed to dealing with behavior problems after they have happened. The antecedent is what happens before the behavior occurs or what has provoked it. Antecedents can be things that happen, such as a change in activity, a loud noise or a distraction. It could also be an action such as asking your child to complete a task, giving attention to another child or saying something.
You should seek help from a suitably qualified and experienced psychologist to address significant behavioral problems, but you can also make some changes yourselves. To change your child’s behavior you must first identify exactly what your child does, where and when. This can help you to understand the behavior and involves describing it in specific terms. Saying your child has tantrums does not give any specific information. It may be helpful to draw up a chart and record behavior.
Example
Your child swears and kicks while getting ready for school in the morning. It is a busy time and everyone is getting ready for school or work. You just want your child to get dressed and have their breakfast but when you tell them to do this the tantrum starts. You tell them that they must be ready by a certain time or they cannot watch their favorite TV program that evening. Your child takes no notice and does not do what you tell them. You and the rest of the family become exasperated resulting in a start to the day that is fraught for everyone. Your child has another tantrum when they do not get to watch the TV program later.
Antecedent Management:
One cause of the behavior above is that children affected by OMS may find thinking about more than one thing at a time impossible. The solution is to put something in place before the behavior occurs. In this case a structured routine with one activity at a time. Break down and list the morning activities, making sure all the activities are listed – do not write “eat breakfast” instead list the activities – take bowl from cupboard, take cornflakes from shelf, pour cornflakes into bowl, put packet back on shelf, take milk from fridge, pour onto cornflakes etc. This is initially very time consuming for you as a parent but soon your child will learn to use the checklist and their morning activities will flow. You can modify this approach with a child of any age. Grab a pad of paper and make a chart (there are also several apps available for smart phones that can help track behavior patterns), make note of when your child has tantrums or issues and what happened right before the meltdown. Maybe your child was hungry, tired, or the sun was shining in his or her eyes. Maybe there was a loud noise, you were brushing her hair or doing something else that caused discomfort that she isn’t able to properly express. When you identify these triggers, you can then anticipate them and plan around them.
Safe and compassionate restraint::
When a child with OMS is in the midst of a rage attack they may become a danger to themselves or others. It is relatively easy (though still entirely exhausting) to safely restrain a toddler or even 4 or 5 year old for the duration of a rage. Because of the emotional and physical strain caused by having to physically restrain a child with OMS several times a day during rages, some parents have found it helpful to purchase a spare car seat and bolt it to the floor. Place the raging child in the car seat and sit close by keeping an eye on the child until the rage subsides. Some parents have also set aside a room in the home as a “safe room” removing everything from the room, blocking the windows out with foam, and placing padded mats on the floor. With older children proper and safe methods of restraint must be learned and used. Consult with a specialist to learn the proper methods.
Medication:
In certain instances, psychiatric medication may be prescribed in an attempt to ease the psychiatric and behavior issues of children with OMS. These medications may be helpful but they can potentially cause unwanted side effects and in some children even cause symptoms to worsen. Psych meds should be prescribed cautiously, begun at low doses, and gradually increased. It is very important that only one medication be introduced at a time so that there is no confusion if negative side effects occur.
Psychiatric medications that are commonly prescribed to children with OMS for behavior:
Trazodone: Used in doses ranging from 50 to 150mg before bedtime to help with sleeplessness and in turn reduce day time agitation. Trazodone is actually an anti-depressant but causes extreme drowsiness and sleep. This drug can potentially cause behavior to worsen if a negative effect is noticed discuss this with your physician. Trazodone can also cause akathisia, a movement disorder characterized by the constant need to move the body (specifically the legs) and extreme restlessness. In rare instances cases of priapism have been associated with treatment with Trazodone.
Risperidone: An anti-psychotic medication used to reduce agitation and rage. There have been varying anecdotal reports of success with this medication. Negative side effects of risperidone include: increased agitation, weight gain, cognitive fogginess, lactation (in boys as well as girls), and movement disorders (tardive dyskinesia, akathisia).
Medications that are contraindicated (can cause the opposite of the desired effect):
Haldol, Tegretol, Trileptal, Lamictal, and benzodiazepines (diazepam, clonazepam, alprazolam).
There are many other psychiatric medications that have been tried with both success and failure in children with OMS for mood, agitation, anxiety, and ADHD. What works well for one child may be a disaster for another. Again, what is most important if you are considering using medication to alleviate behavior and psychiatric symptoms is to introduce one medication at a time and begin with small doses working up slowly.
Tips:
* You may need to change your behavior (e.g. make lists) for your child to change theirs.
* Do not ask your child to explain the reasons for his / her inappropriate behavior, children affected by encephalitis often have limited self-awareness and have difficulty analyzing their own behavior.
* Recognize and respond to initial signs of agitation or inappropriate behavior. Do not let these escalate, because children with behavioral problems following OMS can reach a ‘point of no return’.
* Avoid non-specific comments such as “behave yourself” or “try being good for a change” which give no clues to how your child should behave. Instead, say exactly what you want them to do.
* Keep calm, do not over-react, stay in control of your own feelings ,expressing anger or irritability will only make your child more anxious.
* Maintain eye contact at their level and a low tone of voice.
* Do not simply react, try to understand the reasons behind the behavior.
* Focus on strengths, on what your child is able to do.
* Keep activities structured and organized.
* Use calendars, timetables and clocks to explain what is going to happen before it happens.
* Avoid the word “no”. If your child is asking for something or doing something that's inappropriate at that time, just saying 'no' does not help them move on as their thoughts are on that activity. Try using “yes, but”, “Yes, but later”, “yes, but not today” and give a time or a date.
* It may help to get your child to do something physical to work off emotional tension. Take them for a walk round the block. However, be wary of vigorous exercise if they are ‘wound up’ already. A quiet time with music may then be better.
* If your child is getting anxious or agitated, try giving them something to occupy their fingers (rubber or a squishy ball) or a sweet to suck or drink with a straw.
* Make sure your child gets plenty of rest, behavioral problems often become more frequent and intensive when a child is tired.
* Ignore behavior that is disruptive but not harmful. Make a blank non-smiling face, avoid eye contact and turn away/walk away. But as soon as your child stops the behavior smile and make eye contact, give a hug.
* Use sincere, meaningful verbal and non-verbal means of communicating your pleasure. Tangible rewards (chocolate or other foodstuffs) do not help teach the value of social reward.
* Give your child a place of refuge, somewhere calm and safe, where they can go when they feel overwhelmed.
* Everyone needs to be in charge of something in their lives. A child with cognitive problems has little control, so behaving badly is one way of gaining some control. Make sure that your child is allowed some control over something appropriate.
* Show your child, by your actions, how to handle difficulties and get along with others.
* Behave in the ways you want your child to behave—for example, be caring, empathetic and respectful of others.
Many parts of the above text were taken with permission from: Encephalitis: A Parent's Handbook, published by The Encephalitis Society.