I have 3 children. All 3 have had multiple febrile seizures. My oldest is 7 now. Her first febrile seizure was at 11 months old. They are the very typical seizures, in terms of looks.. Eyes rolled back, blueish around the lips and convulsions both sides of the body, all lasting under a minute. The only thing with her was, she would seize at a very low temperature, like 99, so we could never be prepared for a possible seizure. She had about 14 more since then til she was almost 6 years old. They got milder as she got older. Shes got multiple seizures in the same illness (within the first 24 hours of the onset of the fever, on a xouple of occassions.she had an eeg and mri and both were normal. She has never been put on meds and has been seizure free for almost 2 years now. We think she had finally outgrown them.
My middle child did not have his first seizure til he was almost 2 1/2 (the age if they havent had one by, they most likely wouldnt have). He had his second one in that same illness 8 hours later. He didnt have another one til a year later. He is now 4 1/2, a year since his last seizure and has so far been ok. We are hoping he too has outgrown them. He had an eeg done and came back normal. His seizures were typical in appearance as well and would reach a high temperature before seizing. We would be aware of his illness already with the fever having started already before the seizure came, unlike our daughter. I believe he didnt have as many as my daughter because the onset of his febrile seizures began so late at 2 1/2. No medications. His seemed to be the most common story you would hear about a child having a few seizures.
My third child is by far the most different. He is not quite 19 months and he has had 11, possibly 12 febrile seizures in the last 12 months. His first seizure was at 7 months old. His seizures are not typical. He barely has convulsions.. They look more like twitches, if he even twitches at all.. And when he does, its usually focal to one side of the body. His eyes roll back, blueish around the lips, drools excessively and this goes on from 10 to 20 minutes. His temperatures are low around 99 to100 initially. When he comes out of it, he is very awake and aware. Unlike my other 2 kids who responded "normally" and fell into what I would call a "coma" like whete they got very limp and sleepy. He had an eeg done after his first febrile seizure at 7 months and it was normal. He would get a febrile seizure on every illness he got that resulted in a fever. So recently, he.d have a seizure every other month to every month. 2 illnesses ago, he had his first mutiple seuzure in the same illness.. It was about 36 hours apart. All 3 kids have seen a ediatric neuroligist and for all 3 he says the same. Its our decision. Meds or no meds. Heres the list of side effects. Theres no evidence febrile seizures cause any brain damage and they shoukd eventually grow out of it. It was then, when my son had his 7th seizure at barely 18 months that I even looked at the med papers.. Really looked and researched and would even remotely consider meds. How could I handle 5 more years of this and gow can it realky be doing nothing to his still growing brain?! And just as im still trying to weigh all our options.. Not even a full month later, febrile seizure 8, 9, 10 and 11. All within a 24 hour period. This was last week saturday. By that 4th one and 3rd visit to the er.. Just 2 hours after we had left from the third one.. I didnt even hesitate. Give him the anti-seizure med. They started him on keppra. A few days later, he began acting very aggressive, irritable, angry, emotional, sensitive and cry about the littlest thing non-stop. This was not my child. The neuro said it was a sife effect of the keppra and took him off immediately. He said he can put him on phenobarbitol which could make him hyper or just do nothing.. Which he suggested.i agreeed, for now. It was exactly what I was afraid of.. Side effects.sonow im back at square 1. The reason I said possibly another seizure, is because just hurs before he had his first seizure in tbis most rrcent episode, he was acting very strange.. He was staring off and his attentuon coyld not be gotten. He didnt speak a word for those hours but woukd move about sonewhat normal. He woukd open his mouth to eat, etc. im not sute if that would b consided a seizure, seizure activity ir just abnormal behavior that led up to an actual seizure. Ive felt so alone on this. Please help.