Tuesday, April 16, 2013

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot.

       Well today was our one year visit with Dr. Robinson to get Braydon's noggin checked out.  Last month Shawn and I attended an Epilepsy Syporium in which Dr. Robinson spoke.  We learned alot including that 99% of people who are diagnosed with Epilepsy are only diagnosed after 2 or more seizures.  Well, of course this got me to thinking, we had jumped the gun and started meds when they were not needed.  So in true E style I do a TON of research and just as we were told 99% of all patients are diagnosed after two or more seizures.  So I went into today I had high hopes that we would hear today that we could try without meds for a while.........and I was disappointed!!  BUMMER!!!!!!!!!!!!!!!!!!!!!
     So here is what I learned today
                       Idiopathic Generalized Epilepsy is his diagnosis, I also learned that he was diagnosed past the window of time in which he could "grow out of it".  Which that is something we had been told last time so that was not that new.  Here is a break down of what we were told from the Dr.
 Idiopathic generalized epilepsies (IGEs) constitute one third of all epilepsies. They are genetically determined and affect otherwise normal people of both sexes and all races. IGEs manifest with typical absences, myoclonic jerks, and generalized tonic-clonic seizures, alone or in varying combinations and severity. Absence status epilepticus (ASE) is common. Most syndromes of IGE start in childhood or adolescence, but some have an adult onset. They are usually lifelong, although a few are age-related. The EEG is the most sensitive test in the diagnosis and confirmation of IGE. EEG shows generalized discharges of spikes, polyspikes, or spike/polyspike-waves either ictally or inter-ictally. These discharges are often precipitated by hyperventilation, sleep deprivation, and intermittent photic stimulation (IPS). Inconspicuous clinical manifestations become apparent on video-EEG and with breath counting during hyperventilation. The EEG is unlikely to be normal in untreated patients. In suspected cases with a normal routine awake EEG, an EEG during sleep and awakening should be obtained. Molecular genetic analyses have led to important breakthroughs in the identification of candidate genes and loci; genetic heterogeneity is common.
     Dr. Robinson took her time with me today when she noticed my disappointment.  She actually she showed me his EEG today.  I was told that the "spikes" that they are referring to are spikes in the brain waves.  He had a 90 minute EEG, during which they have him go to sleep.  During the 10 minutes he was asleep he "spiked" 8 times and spiked a total of 48 times.  That's in 90 minutes that his brain hit "seizure spikes".  I guess I realized that this was alot when the original Dr diagnosed him but to actually see it so much more real. 
     Realistically Braydon will be battling Epilepsy the rest of his life and Man do I hate that for him.  However Dr. Robinson told me if we can keep him seizure free for the next year we will start weening him from all meds.  We are now only having to go and see her every 6 months which is nice.  We don't go back until October 15th, she wants to wait until he is 12. 
     My fear.......  Later this year he is starting Middle School.......and man kids can be cruel.  I'm scared to death that he is entering a huge battle.  She agreed that next year we will reevaluate the EEG and re take one and try but man a year is a long time.  If he has a seizure at school or if children find out he is Epileptic my fear is he will be picked on. I realize I cant fight all of his battles, but I'm scared to death for him.  Hopefully middle school will be his time to shine and I'm making mountains out of Mole hills!!!
     I'm just being a Debby Downer tonight because I did not get my way......tomorrow will be different and I will be back to my optimistic self!!!

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