Time to take a chance.

Last Thursday my youngest had her annual appointment with her neurologist. During last year’s meeting it was agreed that if all stayed well we would review her medication. As of now my daughter is 22 months clear since her last seizure. That’s a time span I never thought we would see.

Now we begin the six month task of weaning my daughter off one of her medications. Mixed with the pleasure of knowing my daughter has been seizure free for so long and the acknowledgment that in that time she has also achieved some degree of progress in her learning, sleeping and behaviour, there is a concern. It can only be good for her if one of these drugs can be removed, the fewer substances in her system the better. We are also assured that there is room to increase the dosage of one of the other drugs and therein lies my concern, my fear even. As we await the letter to share with her school and respite so the process can begin the dread lurks, what if?

What if we begin this process and somewhere along the line another seizure occurs? What if it follows the precious patterns where there has been a gap and the seizure is large and triggers a steam of them? What if they can’t be stopped?

So I take a deep breath and I put those fears to one side and await the letter to begin. I hold on to the hope that my daughter will indeed be able to go down from three drugs to two and still remain seizure free. I know that it doesn’t mean the epilepsy is gone, the EEGs show there is still a great deal of abnormal electrical activity but I can hope that with less medication there is increasing scope for my daughter to grow and develop.