We just finish with ME doctor's appointment.
Although we had originally been told that the CT scan taken in Nov after her seizure was normal, apparently the radioneurologist actually found some very subtle areas of apparent decreased density in a few spots. This is suggestive of incomplete myelination (the fatty insulating material that surrounds nerves to help them propagate signals.) Some reasons for incomplete myelination would be head trauma during birth or in the first year of life or a genetic abnormality. The neuroradiologist written recommendation was for an MRI to be performed to clarify what was present in these areas.
Additionally, the EEG that was performed a couple of weeks ago showed frequent sharp slow wave discharges in two areas. One way of thinking about this is that instead of the normal chaotic electrical impulses, there is a frequent flickering burst of current. While this is apparently not usually enough to trigger a seizure, under the right conditions, it did. The clinical interpretation of this abnormal EEG is partial epilepsy with potential epileptogenicity.
One troubling aspect is that the areas of incomplete myelination do not directly correspond to the areas of flickering.
Based on these findings, it was recommended that ME be place on an anti-seizure medication, that an MRI be performed to further analyze the brain structures of affected areas, with another appointment in 3 months and another EEG in 1 or 2 years.
3 comments:
So what does the anti-seizure medicine do? Is there anything they can do to make the myelination grow back? How much head trauma can cause the myelination to not grow? Gracie has hit her head about a bizzilion times, does it have to be a pretty severe hit to the head?
Has she had multiple seizures then?
Our Samantha had abnormal findings on her CT and MRI after she had a seizure, but we were told that unless she has another seizure they won't put her on medication or diagnose her as epileptic. Epilepsy is a seizure disorder indicating multiple seizures, not just one seizure.
So far, so good. Two years no recurrence.
Good luck!
I didn't realize Samantha had a seizure. I'm glad there has been no repeat.
ME has had only one seizure that we know of. I think the ongoing slow sharp wave discharges on EEG are the primary basis of the epilepsy diagnosis, rather than the CT scans. When we were in the ER, they also indicated that it would be unlikely they would give medication unless there was a second seizure, but that was dependent on a normal EEG.
In terms of what level of head injury would cause slowed myelination, I doubt anyone really knows, but fewer is better! As far as we know, there has never been a serious head injury. There is no medication that would help with myelination currently. The main purpose of the anti-seizure medication is to limit the possibility of the "flicker bursts" propagating to other regions of the brain, which is what creates the whole body seizure.
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