I am a mother with two (2) daughters, aged 13 and 17 years, respectively. Both my daughters have epilepsy.
AVAILABILITY OF ANTI-EPILEPTIC MEDICATION
My daughters are on the same prescription of carbamazepine and lamotrigine. In some cases, I can get carbamazepine free of charge at the local government health center, but they never have lamotrigine. Lamotrigine is expensive. I need $80US every month ($40US per child) to buy the drug; I have no option as after assessment the Carbamazepine and Lamotrigine combination has been able to reduce their seizures.
This is a major concern. I am formally employed hence this has enabled me to buy their medication every month. However, we all know life is unpredictable. If I am to wake up one day and be unable to work or am unable to afford their medication, what will that mean? The thought scares me. If only these drugs would be available at government health facilities, I would be a happy mother.
STIGMA AT SCHOOL
The way school authorities handle cases where a learner falls ill at school leaves a lot to be desired.At the end of the day, as a parent, I wonder whether the fact that most employees in various sectors are demotivated has resulted in the birth of an attitude where no one cares about anyone.
Special Information about the learner
It is the norm that if one has a child with a medical condition, wherever the child goes, they make the relevant authorities aware so that should anything happen, appropriate assistance is given.
No one cares anymore
It is quite unfortunate that regardless of this information being availed, the child rarely gets the appropriate help from the relevant authorities. I will give an example of one incident when my daughter had a seizure at school. I was told by my daughters’ friend that a teacher had said ‘I don’t know how to help, since you are the friend, then help her.’
If these critical issues are left to other learners who happen to be minors, the situation becomes tricky. We come from different backgrounds; hence a mixed bag of information is known. This resulted in the learners inserting a spoon in my daughter’s mouth while she was convulsing after various opinions had been passed. When I got to know of this, I was heartbroken. A lot of questions went through my mind, i.e., what if my daughter had choked with a spoon in her mouth? But who do you tell, no one cares after all.REGULAR SCHOOL HEALTH EDUCATION VISITS BY HEALTH PROFESSIONALS
On the request of a parent, if the Ministry of Education would allow special visits to schools by health professionals to educate learners and teachers as well, on illnesses like epilepsy and others (health professionals would probably be better placed to know other illnesses that may befall a learner whilst at school).
It is important for this information to be given generally, and not appear as if it is targeting a particular child to avoid stigma. This will also help clear various myths around various diseases. For example, one learner came to me worried and said that my daughter’s saliva had gone on her jersey. Would it mean she now had the disease as well? I explained to her that it was not the case.
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