Looking back, and so that our experience can be helpful to others, the observations I can make through my 20 years of living with Elias’s severe epilepsy are as follows:
- Visible and subclinical epilepsy is at the heart of all the problems; it causes damage and hinders the neurological development of our children and can also impair acquired neurocognitive functions.
- Proper management with combinations of antiepileptic drugs as soon as any epileptic manifestations appear (flapping, rambling, eye blinking, withdrawal of consciousness, hyperactivity with drooling incontinence, etc., (often overlooked by neurologists)) is more than necessary, even vital.
- Choosing a well-tolerated antiepileptic drug at a dose adapted to each child’s pharmacology is crucial and even vital because of the risk of the onset or worsening of psychiatric disorders or unbearable and unmanageable behaviors such as self- or other-directed aggression. Do not confuse the side-effects of anti-epileptic drugs and symptoms related to the CHD2 mutation, otherwise we’ll end up accumulating a non-exhaustive catalogue of behavioral disorders and new forms of epileptic seizures, including falls that can cause irreversible bodily damage.
- Psychomotor therapy, occupational therapy, speech therapy, massage, and physiotherapy are necessary after periods of fluctuation.
- Finally, I tell myself that I was right to change neurologists when I’m not listened to and my observations become mere details in the neurologist’s response, which doesn’t change anything in their supposed conclusion! I remain optimistic and convinced that for our children or adults, learning and acquisition must continue even after 38 years. It’s difficult for me to say that Elias will no longer progress in his independence; this hope keeps us going to guarantee a better quality of life for Elias before I pass away.
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