Zach In Four Stages...

At age of three my child experienced his first seizure, a drop seizure.

He picked himself up and appeared to be unhurt. At first I looked at him and thought “that’s not normal behaviour”. He probably had a half a dozen drops that day. His seizures continued to increase in frequency and severity.

Many different medications were tried until his seizures were reduced and considered somewhat controlled. Lennox-Gastaut Syndrome was diagnosed.   The focus then shifted to achieving and maintaining as much normality as possible. He resumed going to a childcare centre four days per week, which was supplemented with two sessions per week at a special education development unit (SEDU).

He progressed well while his seizures were under relative control.

Poor behaviour became the big problem which was usually seizure related. Medication also has had a huge impact on his behaviours'.  Makaton has been implemented to help when he has difficulty processing verbal information.  

A huge problem that we have had to face along the way, is that many people who are working with our children, lack knowledge of just how seizures may present, especially partial seizures. They don’t understand the different stages of a seizure, nor the frustration which can be experienced by a child who doesn’t know how to tell anyone how or what he is feeling.

Despite giving “authorities” a detailed seizure management plan and examples of behaviour problems, my son was labeled as naughty, bored and just angry by one service provider. They stated that he wandered around because he was bored, that he needed to be sat down and taught to “breathe through the anger” and if he couldn’t learn to conform with the rest of the group then he should not be in a childcare centre.

The final insult was when I was told that “Epilepsy was a separate issue”. I was outraged!! I replied to this report pointing out where they were ill informed or just wrong, that it is important to understand that epilepsy and behaviour are interrelated.  

This incident brought up an issue that would stay with Zach all through preschool as well as school – seizure related behaviours are often dismissed as naughty.

Fortunately Zach had a brilliant SEDU teacher and after many discussions and meetings she introduced the four sides to Zach.

That is (1) subtle seizure; (2) severe seizure; (3) post seizure; and (4) non-seizure.

This was possible through observations of all behaviours, seizures being documented in his communication book and a seizure chart developed. It didn’t take too long before a pattern emerged. What did surprise me about this process was that he could stay in a stage for days even weeks, especially stage (1) subtle seizure.  

Zach is now seven and is going to school which he loves and can be just as mischievous as any other child, but if I can find the main reason for the difficult behaviours, they can be dealt with more appropriately.  

I will explain these stages in more depth:  

Zach Stage (1) Subtle Seizures Stage one consists of a series of subtle seizures, often with no obvious outward signs.  In Zach’s case, hand tremors are usually the first sign, his fine motor skills will start to become difficult and he will get frustrated quite quickly. He will have difficulty processing verbal instructions and there can be a delay in answering questions or in following through with tasks.

For example, if I say ‘Zach, please get your shoes and socks”, he may look at me for a few seconds and then may move off in the direction of his shoes but not necessarily get them. He may only catch one or two words of the sentence and he gets confused. Sometimes his speech is affected, it may be slurred or the words just simply can’t come out and he just won’t be able to put the sentence together. Zach is aware of this and it can lead to frustration, which then leads to an outburst of anger. Zach’s absences are also another sign of stage one. Zach is also photosensitive which means he has less tolerance to being able to travel in the car.   In stage one he is more prone to impulsive behaviours, for example “snatch and run”. He will also have no idea of the consequence of his actions. He will complain of feeling nauseous or hearing things and get annoyed when I don’t answer the phone, which only he can hear. He can also have an increase in myoclonic jerks in this stage, especially while he is sleeping. Drop seizures can also happen.  

There are a lot of subtle seizures which Zach goes through, fortunately these don’t happen all at once but they are signs that he is in stage one and it usually leads to Stage Two severe or prolonged seizures.  

Zach Stage (2) Severe Seizure Stage two consists of severe of prolonged seizures. In Zach these include tonic-clonic, complex partial and some simple partial. His tonic-clonic seizures tend to come in clusters which normally last for a few weeks, however in the past have lasted longer.

For Zach an example of a cluster of tonic-clonic seizures is nine or ten over a two week period. Then a short break usually back to stage one for a week or so and then another six or seven tonic-clonic seizures over a couple of weeks. Other stage two seizures consist of prolonged simple partial and complex partial.   Most people I have come across who are working with Zach are aware of how a tonic-conic seizure presents but are not so sure of the partial seizures. The complex partial seizures present in Zach as a loss of awareness, repetitive movements and a change in physical appearance. He will get very pale and clammy and get dark circles around his eyes. Overheating can also cause his seizures. Simple partials are more difficult to recognize as the seizure happens while he is alert. He may feel sudden fear, anger, sadness or joy. He can cry inconsolably. He is non-compliant and impulsive. Sometimes he will appear to be very angry and absolutely non-compliant and it is in the post-ictal (after seizure) when I realize for sure that he has been in a simple partial seizure.  

Zach Stage (3) Post Seizure The next stage is post seizure. For me this is a bit like the “eye of the storm”, the seizure is the first part of the storm then there is a brief period of calm while Zach sleeps or rests, and then there is a time of disorientation, clinginess and anger. During this stage the only way to console him is to sit and stay with him giving cuddles and reassurance for as long as it takes – sometimes for hours.  

Zach Stage (4) Non-Seizure The final stage of Zach is the non-seizure stage. This is a stage where he is able to take in a lot of information, he learns in leaps and bounds and I have this wonderful little boy who understands his world a lot better. He wants to please, he wants to be helpful, he can even show some independence. He can play alone or even be a contributing part of a group. He is happy, and so are the people around him, and so am I.   Liz Ward   If a child with epilepsy does display challenging behaviour, it is important to ask the following questions in an attempt to identify the cause of the behaviour: Is the behaviour caused by seizures? Is the behaviour caused by medication? Is the behaviour independent of seizures or medication? These questions can be used to help understand a child’s behaviour. Quite often the behaviour will be caused by all three or various combinations of these factors. Understanding the cause of your child’s behaviour will assist you and your child’s school to develop management plans that are relevant to the needs of your child. (Anne Little; Epilepsy A Resource for Teachers)