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Help! My 2yo diagnosed with epilepsy after one febrile seizure...
Thu, 07/13/2017 - 23:51Topic: Parents & Caregivers
Hello,
My son developed a fever Tuesday around noon and had a seizure around 6, it has been hell for us since. I called 911 and hospital wanted to keep him overnight as his seizure was considered a "complex febrile seizure" and they wanted to do further testing. They did an MRI and EEG scan. MRI came back normal and EEG did not (I believe it was do to sleep deprivation).
Neurologist diagnosed him right away with Epilepsy. They prescribed a medication called "Keppra" to prevent further seizures. I fought hard to not give him the meds until we did further testing or obtained a second opinion but doctors said if he had another one it can do some serious damage but that it was "our decision". As a parent of course I am going to do everything to protect him but I am deathly afraid of these meds as I truly feel in my heart he is totally fine simply had a seizure due to his high fever. We ended up giving him the meds last night for the first time but its killing me, my heart tells me he is completely fine. We looked into other pediatric neurologists today and found one who is a lot more experienced and has excellent reviews. We have an appointment with him next week. This is all so terrifying. Any advice? Similar experience? Im hoping he says he does not need meds and we can ween him off ASAP.
Comments
so this is a matter of degree
Submitted by Amy Jo on Fri, 2017-07-14 - 04:15
so this is a matter of degree, complex implies it was prolonged, not a minor thing! how long did it go? or were there multiple seizures occurring? what kind of doc and hospital were involved? a general neurologist at a general hospital vs an epileptologist at a children's research hospital can have a huge difference in diagnosing experience with younger kids. if it were a simple febrile seizure, that would be easy to blow off. Depending on the situation I would give meds (if you are already dealing with an experienced pediatric neurologist at a great hospital) OR would ask for emergency intervention meds (diastat, intranasal/buccal midazolam) while scheduling a follow up with an experienced pediatric neurologist or epileptologist at hospital associated with an epilepsy center (who would also schedule a second eeg).
my experience is not with
Submitted by Amy Jo on Fri, 2017-07-14 - 04:15
my experience is not with complex febrile seizures, just one of many different parent epilepsy experiences. I do have a child with epilepsy (various focal and generalized seizures but no tonic clonics) and another child had a simple febrile seizure.
so this is a matter of degree
Submitted by Amy Jo on Fri, 2017-07-14 - 04:11
so this is a matter of degree, complex implies it was prolonged, not a minor thing! how long did it go? or were there multiple seizures occurring? what kind of doc and hospital were involved? a general neurologist at a general hospital vs an epileptologist at a children's research hospital can have a huge difference in diagnosing experience with younger kids. if it were a simple febrile seizure, that would be easy to blow off. Depending on the situation I would give meds (if you are already dealing with an experienced pediatric neurologist at a great hospital) OR would ask for emergency intervention meds (diastat, intranasal/buccal midazolam) while scheduling a follow up with an experienced pediatric neurologist or epileptologist at hospital associated with an epilepsy center (who would also schedule a second eeg).