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When does ADEM end? Latest Update on Neely’s HealthArticle posted on Monday, September, 10th, 2012 at 9:33 am
When does ADEM end? I wish we knew. I thought I’d be writing this week to tell you that we had crossed the recovery finish line. Neely had an EEG last Friday. We went into the test extremely optimistic. Everything seemed to be in her favor. Her last test results were phenomenal, she started Kindergarten and is doing great, and she is still seizure free. We were expecting to get a call from her neurologist, Dr. Augusto Morales at Greenville Hospital System to tell us that Neely had finally won, that we had beat ADEM, and that she could safely begin to ween off of her seizure medicine.
That didn’t happen.
Neely’s EEG was dramatically different from her previous test. Rather than the 2-3 ‘mis-fires’ that we saw on her EEG over the 2 hour test last year, we saw 15-20 ‘mis-fires’ in a window of 30 seconds or less in the EEG last Friday.
Dr. Morales believes Neely has a condition called Epileptogenesis. When a brain is severely traumatized (as Neely’s was) the brain can often go into a period of ‘shock’ (for lack of a better word) where brain waves appear normal. That is where Neely has been the last 3 years. At some point the brain ‘remembers’ the trauma and begins responding as if it is being traumatized. That is called Epileptogenesis, a period where the brain learns/becomes Epileptic.
According to Dr. Morales, there is nothing medically that we can do to prevent this from happening. The medicines that are available can be effective at preventing seizures, but are not effective at preventing Epileptogenesis or Epilepsy or any other effects that could come from this condition. (there are many…still learning more here)
The area of Neely’s brain that is suffering is in the posterior areas. (Back of her head, just above her neck) This is the area that controls vision, plus a lot of other stuff. According to Neely’s EEG, there is a high probability that Neely will have seizure(s). (Dr. Morales said the chances are not as high as 90%, but also not as low as 10% which is where he would have put her chances last year) We just have to use medicine to try and prevent those seizures. And we have to work hard to help Neely deal with or cope with any difficulties that could arise from the Epileptogenesis or from side effects of the increased medicine.
Our next step is to get an MRI. The MRI will help us determine if there are any new lesions, irritants, or inflamation on the brain. Dr. Morales is going to let us know when he gets this scheduled. In the mean time we are giving her a significant increase in her medication. We are waiting and watching and praying.
Meanwhile, Neely looks perfect from the outside. She is playing, growing, learning, laughing and loving life. All I have to do is look at her to see that the test results don’t match the child. And that is some pretty amazing evidence that Neely is going to be just fine.
So today, I am so grateful for how far Neely has come, and for the families that we have met as a result of ADEM and I am asking for your prayers. Please pray for Neely’s continued health, for the doctors to have the foresight they need to help her, and for the strength that we all need to keep fighting.