Epilepsy Sucks!

posted 27 Nov 2012, 05:47 by Tara Haroon
Since Joshua was diagnosed with epilepsy at 11 months, we live in a constant fear of the changes and dangers that it brings.  Not only do the seizures carry high risks but the medications too.  We became all too aware over the past few weeks...
Joshua had an increased number of absenses and myoclonic clusters of seizures.  Many people felt that the amount he was having was having a detrimental effect on his learning.  With this in mind we discussed a new plan for Joshua with his Neurologist. This entailed weaning off of one of the Anti-Epilepsy drugs (AED's) and weaning onto another.  The transitions have to be slow and managed as changes can fire off new seizures and most AED's have a sedative effect which causes drowsiness.
The newest medication he was put on brought about a drastic change, not only in seizure type but also in Josh.  He could sleep for over 12 hours a day easily.
Then just over a week ago Joshua stopped eating or drinking. He was too tired to do anything.  He became floppy and just wanted to sleep.  After 2 days we took him to hospital and upon finding no virus or other explanation doctors knew that this was due to the medications.  He was doped.  It took 6 days for Josh to properly wake up and join us. 
After many discussions with his neurologist and the team at the hospital, we are clear in our expectations now.  Josh has a very uncontrollable form of epilepsy which means we can aim for seizure free but Josh will be a zombie or we can accept the seizures and have our happy, smiley, giggling, bouncy Josh who loves life.  Its a no brainer! 
Thinking back to my own ignorance in the world of epilepsy I thought that as long as you took your medication that all was perfect and that seizures were a result of medicine misuse.  I know I didn't begin to understand the complexities, settlements or agreements that have to be reached.