Please note that with this piece I am certainly not prescribing that anyone else follow in my footsteps and put into action decisions similar to those that I took; it is simply an account of what happened, with my interpretation, prefaced by a medical hypothesis.
I believe that concerning the epilepsy in severely damaged brains of multi complex handicapped children they may have particular seizures as a necessary expression of normal behavior. Some behavior simply does not have an outlet with these children, but to think that they cannot accumulate psychological stress would be absurd.
How does the child express frustration that builds up over time? Frustration as a function of complicated neural pathways established over time, involving the limbic system cannot, I believe, be solely associated with intelligence but is associated with perception. Since our knowledge of a severely psycho-motor retarded child's perceptions is virtually nil it is reasonable to think that their emotions and reactions, though truncated, still follow certain principles of development and require expression. I hypothesize that the brain that is so damaged, so mangled and handicapped will on occasion look for the path of least resistance and thus many psychological events may have little choice but to express themselves as seizures.
All the comforting and caring in the world will not necessarily alleviate such events since while the complexity of expression of a such a strongly handicapped child may be dwarfed by that of an average adult, just as is the case when comparing children's emotional outburst with the manner in which adults (learn to ) express themselves, the force of emotion can break the bounds of conditioned response to the point of physically uncontrolled movement.
When the water rises in a river it will always flow over its banks at the lowest point.
The question becomes even more cloudy, if we suppress, through psycho-pharmacology, the very ability of that handicapped mind to direct its already minimal thoughts, counteract welling emotions and disrupt the childs ability to form complex feelings.
I know that approaching such an issue is unreasonable for now, with our knowledge of the brain being so utterly small, but all I can say is that, when my son was born, so badly damaged with no hope for life, any life at all, I decided I would not scrounge for my motivation to help him from within that dubious well, hope, but rather that which I knew to be equally limited; all the scientific knowledge there was to be learned and to let the lions share of my help come from what my heart told me.
Research about how much damage epilepsy attacks cause is very controversial. There is little or no evidence that actual physical damage is caused to the brain by repeated seizures. Status epilepticus is a different animal and of course it is known that unabated seizures can lead to status and eventually to death. Why do some seizures lead to status and others don't is unknown.
The above conundrum of psycho-emotional seizures notwithstanding certainly seizure activity should be kept to a minimum. People will say that epilepsy unchecked will “cause brain damage”. I have as yet not found any research showing physical damage. Functional damage, much easier to look for and to show objectively, is often presented in cases where children with relatively mild epilepsy show improved cognitive skills when their seizures are better controlled.
A child with parts of the brain missing, parts of the nerve covering missing, damage to different areas may lack the most basic cognitive skills to begin with. The question is then, if you want to give even the slightest chance for such a heavily handicapped brain to develop do you give it the best chance by muting what little brain activity there is, right from the start, or do you allow the inevitable periods without seizures for the brain to catch up in its development, as best it can?
I very consciously decided for the latter for my son who began having seizures from the first day of his life and wherein the only option for treatment given (or available) was to sedate him completely. Not for a day, not for a week but until further notice.
The newborn child's brain needs stimulation for it to develop, obviously when sedated it cannot do this. Segev's condition was an unknown to the doctor's at that time. Would he live? I didn't know, but what I did know was that after a month of his suffering and with the uncertainty of his life hanging over me, I decided to let my son, for whatever time he would have on this earth, have the benefit of experiencing my love for him.
If he had died while under heavy sedation, never having known my touch, never having heard my voice, then I would have hated myself for the rest of my life.
Whether in the end his not being sedated by the anti epileptic drugs for the first year of his life allowed more or less development in his brain, I cannot be certain, but I know that in his survival, besides his own innate strength and besides the constant medical attention that there is a place for a third modality. A form of help that transcends our ability to rationally understand its workings but that must be present in any case if we are to know that being is worthwhile. And that is, of course, love.