A lot of parents who join our support group are overwhelmed by the implications of the diagnosis, especially when it hits “out of the blue” to a previously normal child. Most of us feel justifiably anxious about the uncertainties that may lie ahead. All our hopes and plans for our child are thrown up into the air and we are left with a great sense of loss. This grieving process is just as real and normal as if we had actually been bereaved. The initial stages of grieving, denial and anger are normal for any parent confronted with this diagnosis. Whilst we feel that we may have lost the child that we had pre-MAE, there is hope!!!
Firstly, there is a good chance that your child will outgrow the condition. Medical information on MAE is confusing and conflicting but our current understanding is that the majority, > 70% grow out of the disorder within the first three years of onset or around the age of 7-8 and this seems to be what we, as a group, have witnessed in our own children. These years may be the most turbulent that you’ve ever experienced, but the hope of a seizure-free future keeps many of us going. For those that do not completely outgrow the condition, the seizure frequency and severity should reduce significantly by later childhood or adolescence to become more manageable.
Secondly, meet our children. You will see some lovely pictures of our children and descriptions of them that do not focus on their epilepsy. As one mum put it, “My son is happy – everything else is our problem”. True, for the time being, you may have to shift your expectations for your child but you will learn to value so much more their happiness and the progress that they DO make.
Thirdly, you are not alone. This is a rare condition and you may not actually meet people in the same situation as you. Thanks to the internet, however, you have access to a lot of information about MAE, plus our Yahoo Support Group. This forum is an excellent place to meet with other parents, and learn how to cope with all aspects of living with MAE. Members support and encourage each other, and it has been an invaluable lifeline to those of us feeling isolated and uncertain about this diagnosis. ¨