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throwing out the parental lifeline :)
Thu, 10/15/2015 - 16:47Hi, my son had his first seizure at 6 months of age. It was chalked up to a febrile seizure and we moved on. When he was 11 months old, he had a cluster of seizures that resulted in us being medevaced from our small island town to a larger area hospital. His EEG came back normal and after 24 hours of observation we were sent to an area hotel to await follow up appointments. In the middle of the night my son had another seizure and we called an ambulance and ended up back in the Pediatric ICU. At this time, an MRI was also done and came back normal. We were advised to start medication and given emergency medication to ease our minds for our long flights home. We started him on Keppra and hated it. Hated it. After returning home and meeting with our clinic, we decided to wean him off medication. He began having seizures monthly, then weekly and finally we put him back on medication and decided to see a specialist from a larger hospital that was visiting our town. He was diagnosed with epilepsy on September 3, 2014 and we thought that was the start of a normal routine. We can treat epilepsy right? Wrong. We are now 13 months after our initial diagnosis and currently on FOUR antiepileptic drugs that do not control his seizure. By all outward appearances, he is a healthy,happy boy. We have not seen the dreaded side effects, cognitively he is excelling, developmental and speech are right on track, behavior is under control but we still have no seizure control. We are now weaning him off of Keppra, and Trileptal and trying a regimen of Depakote and Zonisamide. We have since the original diagnosis had two more EEG's which did show seizure activity and we now have an MRI, PET scan and video EEG monitoring scheduled. The possibility of surgery has been brought up by our neurologist as well now and I am terrified. Terrified. I am looking for success stories, personal struggles and positive support so I can give my poor husband break with the what if questions. Thanks all!
A question I would like you
Submitted by just_joe on Sat, 2015-10-17 - 17:29
A question I would like you to answer. What is controlled?It is a simple questionIs controlled by you meaning no seizure what so ever? Is controlled by a neurologist the exact thing? You might be surprised to know but the word controlled can have different meaning an yes a person can be controlled even if they are still having seizures now and then. While I do not have a child with epilepsy I do know about it from the person with epilepsy's point of view.You also should know it does take time to wean a person off a medication and onto the new medication, that it takes time. You see after a person stops taking a medication like a AED that medication takes 4-6 weeks after taking the last pill to get completely out of the body. Which is about the same time period that would show the side effects. The only other way I know of is staying in the hospital while the neurologists work on getting the therapeutic levels in your body set at levels they want them at. Understand there are many neurologists that may not work for John Hopkins or another major hospital. That foes not mean they aren't good. For all I know they may have contacted my neurologist. Since he has discussed neurology and epilepsy in hospitals. Oh and he has given lectures an had discussions all across this country all across this nation.