I can barely believe that I am typing these words…but I am…DEEP BREATH….We are weaning Gabriel’s Felbamate. Felbamate ,the magic bullet drug, that saved our baby from the year long onslaught of seizures. The drug that we fought for….the drug the doctor finally prescribed (after 9 months of us asking)… just to placate us…saying it had less than a 0.1% chance of working….the drug that STOPPED the seizures! Gabriel started taking the drug one day and seizures did not come back! YEP…that drug….our answered prayer….we are attempting to wean Gabriel off of it.
I have been struggling for months to come up with an analogy to explain what we are doing. I finally came to me the other night. It is like we are beginning the descent down a rock cliff. The dangers of staying on top of the cliff outweigh the risks of repelling down. We have all our gear, we’ve done the training, we have as much understanding of this experience as possible, but it is time to officially begin the descent.
Gabriel’s type of epilepsy, DOOSE, is one in which, certain channels in the brain don’t open and close correctly. This inability to open and close caused various types of seizure of our boy. Since starting Felbamate in April 2013, he has been seizure free. It is possible that the channels in his brain that did not open and close correctly have developed the ability to work correctly over the last few years. The terrible joke in all of this…the only way to find out for sure is to slowly wean the medication off and see if the seizures stay away or not 🙁 UGH! Yep, typing this makes me want to throw up because it is so scary!
We did a 24 hour EEG last October (or maybe November). The point of which was to see if it looked like his brain had healed. If the EEG showed no abnormality- it would be an indicator the brain had healed and we would wean felbamate. We left the hospital after the 24 hour EEG having talked briefly with the neurologist on duty. He said there was not seizure activity, but there was background something or other (I can’t remember the term) that indicated the possible beginning of seizures that were maybe being shut down by medication. We left the hospital knowing we would meet with Gabriel’s neurologist for a follow up appointment in a few months. Our basic thought process was…there is NO WAY ON EARTH WE WILL WEAN THIS MEDICINE!!!!
We finally had the follow up appointment in April. I can’t put into word exactly how or why but something had shifted in both Chuck and I, that made us open to listen to Gabriel’s doctor. At that appointment the doctor basically said that whatever was on the 24 hour eeg were sparks, they could be sparks that would ignite into seizures, or they could be sparks that wouldn’t ignite. Gabriel’s doctor explained that Felbamate is hard on the liver (which we knew) and that it was a lot to put his body through if it wasn’t needed.
Somehow, living through the hell of watching my dad die from pancreatic cancer months earlier, made me listen to the doctor talking about my son’s internal organs in a new way. I was no longer obsessively focused on Gabriel’s brain. I had an understanding and hope of Gabriel maybe being a father and grandpa someday. My fear of doing something to hinder his long term future outweighed my fear of taking a calculated risk to give his body the best chance at long and healthy life.
It is amazing how my internal thought process had shifted so much. We spent so long feeling like we were fighting for his life, then once we had seizure control, fighting for every developmental step, always hoping for the best, but just not knowing. To have Gabriel in a spot, where he is doing so well, that I could picture an independent future that includes meaningful relationships was pivotal.
The actual wean of the medication will take a couple months. We will reduce his daily amount 1 mil a week until he is totally off the drug. If the seizures start up again, we just put the drug back on. We are one week in right now. This week wasn’t scary because the amount he was on this week, was the same amount his on for a couple years with great success. The next weeks will be a bit more scary, but here we go.
Along with watching carefully for seizures, we are expecting and watching for other things…such as mood swings, developmental changes(possible jumps forward as his brain is relieved from the suppression the medication is causing, or possible steps backwards as his brain adjusts to new patterns), etc. that come along with medication changes. Some things we will just have to wait out, others we may be able to tweak other medications.
So many months later…here we are. We are on the precipice…it’s time try the descent down the cliff…hoping and praying for strength, grace and peace on the journey…..the end goal is for G to have firm footing on solid ground…so he can sprint into life free from seizures!