Thursday, March 20, 2008

Tough Decisions

For a long time, I've wanted tot put into writing what it is like to give a child anti-epileptic drugs. For us, we felt that we had no choice but to try the available drugs. The seizures were long and getting longer, didn't always stop on their own and Noah was suffocating during every seizure. I had to carry a bulb syringe in my purse to suck out the saliva that would cause his asphyxiation. It seemed to us that he would die if we didn't pursue the drug option. At the same time, each drug had dangerous side affects. We didn't know the long term ramifications of these drugs. It's the most sickening and helpless feeling. We prayed for God to help us through our decisions. We knew that He could make the best of the worst situation.

Another aspect of placing a child on anti-epileptic drugs is the feeling that your child is one big experiment. Every drug works differently on every child. Side affects seen in one child are not always apparent for another child. In order to find out the level at which the drug works for each child the following protocol is used: begin on a low dose, break through seizures, re-evaluate and increase med. This pattern continues until the child shows unacceptable side affects. It is incredibly discouraging.

My son is still taking Topomax in addition to the Ketogenic Diet. We don't know if the success that he is experiencing is caused by a synergistic interaction between the med and the diet or if it's the diet alone. But, at this point, we won't muddy the waters by trying to figure it out.

My prayer is that you feel support from others during the heart breaking experience of choosing meds. God is there to provide comfort. He works through family, friends and yep - medical experts to help you and your child. Consider the options, research everything, pray and listen.



©2009 KETO KID | by TNB