The challenge of seizure control

Tuesday, November 11th, 2008 | Medical complications of the developmentally disabled, Seizure medications

Controlling seizures is one of the most difficult, complicated hurdles we face with Quincy. There is no magic formula…it is a dynamic, ever-changing situation. There seems to be little rhyme or reason as to why she will have excellent control for stretches of time and then it all just goes to Hell. There are some factors that are obvious, like whether or not she is fighting an illness or if she has had a tremendous period of growth and simply needs a higher dosage than before. But, for those simple factors there is a multitude of factors that cannot be measured. For one, Quincy takes a cocktail of seizure medications. So you have to try to figure out which one might need to be increased. Also, you need to consider how do the meds work on their own and how do they work in combination with the others? And then we walk a fine line between wanting to keep her meds at a level that will control seizures but not so high as to have her be sleepy and drugged-out. Some of her meds can’t be increased to a higher dosage without being toxic so if they are no longer effective then we must go through a very extended process of weaning her off while slowly bringing on-board a new medication that may or may not work. I think her pediatric neurologist once referred to seizure control as voodoo and he couldn’t have been more correct. Quincy has been on almost every seizure med out there and some that aren’t even out there but that we’ve had to purchase from other countries. I mention this because up until a few weeks ago Quincy was having a great stretch of seizure control. When she has these stretches she is alert, active and attentive. But then we lost it and the seizures returned. They wipe her out physically and then her struggles begin. So today we begin a dosage increase with one of her new meds and hope that it will do the job, that it won’t over-medicate her, that she won’t suffer side effects and that our voodoo science will produce the magic formula that gives her the relief that she needs. If not, we will tweak the formula another way…always striving to unlock Quincy from the seizures that control her so she can have a bright, clear mind and a healthy, happy life.