Good luck with weaning. I personally would get back to the neuro and tell them that you want them to direct your daughter’s wean. Neurologists are specialists in anti-convulsive meds not pediatricians, so I’m surprised that your pediatrician would even feel comfortable being in charge of this. At the very least, I would ask them to direct your pediatrician with how much and how quickly to wean her off the phonobarb. Your doc may have witnessed the seizure, but the neuro is the one who’s been reading the MRIs, and the neuro is the one who’s going to be doing the EEG. Is there any way you can push to get the EEG done faster? That might be the missing piece of the puzzle for you. Again, I strongly recommend the book “seizures and epilepsy in childhood” by Freeman. You can get it very cheap on chapters.indigo.ca . I love ours and have read it cover to cover too many times to count.
Did they tell you exactly what kind of damage and where they saw it on the MRI? I wish in retrospect that I’d asked for copies of my daughter’s reports so that I could have access to the information myself.
Yes, NG tube, is a feeding tube (nasogastric tube, through the nose).
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