Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Does 11 febrile seizures under 2years old call for daily meds?

Fri, 01/28/2011 - 21:25
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.

Comments

Re: Does 11 febrile seizures under 2years old

Submitted by flaca on Mon, 2011-03-14 - 17:34

I am so sorry for your experience. Thanks for sharing it here with us.  All too well I am familiar with your situation.  I am the mother of a 3 year old with febrile seizures.  More than that I had them as a kid - my last one being at 6 years old on the school bus! I'm ok now but feel very guilty that I am the one who passed the gene on to my daughter about her febrile seizures. 

IMO I would stay away from meds.  My daughter has had 7 seizures and so far my doctor has been great about not pushing meds - her 2nd seizure was complex and lasted over 25 minutes.  Even with the EEG and all the tests - so far so good - we decided against the meds.   Personally my older brother and I both were on Phenobarbital for over 6 years (it was the 70s and my mom wasnt very good at being inquisitive and pushing back) and I really think it was a waste and in my older brothers case, very detrimental.   In his late 30s he shows symptoms of some sort of mental problems, something akin to Asperegers syndrome.  We may never know the long term affects the pheno had on him but he is very shy, very moody, cannot keep a job, speaks with a speech impediment and has no social skills. I on the other hand am fine. I  am college educated, working professionally, and happily married.   Since we were both exposed to the same drug its hard to says the drugs caused his situation but I have to take a hard look and my final assumption is that "if it didn't hurt well it certainly didnt help either."   

It seems like you already have your own experience with the meds - I know its so frustrating, exhausting and hard in this fight against the febrile seizures, what I always have to do is take a deep breath, and pray "This too shall pass."   Stay strong mama. Feel free to contact me if I can be of any help. 

I am so sorry for your experience. Thanks for sharing it here with us.  All too well I am familiar with your situation.  I am the mother of a 3 year old with febrile seizures.  More than that I had them as a kid - my last one being at 6 years old on the school bus! I'm ok now but feel very guilty that I am the one who passed the gene on to my daughter about her febrile seizures. 

IMO I would stay away from meds.  My daughter has had 7 seizures and so far my doctor has been great about not pushing meds - her 2nd seizure was complex and lasted over 25 minutes.  Even with the EEG and all the tests - so far so good - we decided against the meds.   Personally my older brother and I both were on Phenobarbital for over 6 years (it was the 70s and my mom wasnt very good at being inquisitive and pushing back) and I really think it was a waste and in my older brothers case, very detrimental.   In his late 30s he shows symptoms of some sort of mental problems, something akin to Asperegers syndrome.  We may never know the long term affects the pheno had on him but he is very shy, very moody, cannot keep a job, speaks with a speech impediment and has no social skills. I on the other hand am fine. I  am college educated, working professionally, and happily married.   Since we were both exposed to the same drug its hard to says the drugs caused his situation but I have to take a hard look and my final assumption is that "if it didn't hurt well it certainly didnt help either."   

It seems like you already have your own experience with the meds - I know its so frustrating, exhausting and hard in this fight against the febrile seizures, what I always have to do is take a deep breath, and pray "This too shall pass."   Stay strong mama. Feel free to contact me if I can be of any help. 

Re: 11 febrile seizures under 2years old call for daily meds?

Submitted by N608 on Tue, 2011-07-19 - 21:58
Hey how are we? I to also have a child with Febrile seizures they started when he was 14 months. I remember the 1st one scaring me that I rang 000. They took us to ED they soon sent us home after 4 hours only to have the 2nd one a few hour later we then stayed in hospitail for 2 days. All went well, about 6 months later he had a nother one and a smaller 10 second one in car, keept him for a few hours then sent him home once again this time no more until just 3 days ago we we're at a birthday party he was having fun playing then he started getting hot going down hill gave him some nurophen with in 20 minutes he had a small one, a friend that is a nurse suggested we take him up to the hospital as we put he had another 40 second one they rang for an ambulance as he wasn't coming around, once again they watched for a few hours then sent us home only to have a 3rd one a hour and a half later. Once again put him into the car to take him to the hospital and had another small one in the car, got him there they said yes will we keep him in. 2 hours later took his temp only 38.2 0c just about to take bloods and he had his 5th one in front of the doctor. He is now only 21 months and has had 9 in total and the last 5 all with in 10hours. I now have to get a EEG done next week and they now also say the chances of the next one lasting longer are very high. I am so scared of what will happen next time, they have ginen me meds to keep on me just incase it last more then 1-2 mintues.Has anyone heard or had anthing like this happen to them?

Re: 11 febrile seizures

Submitted by liezelee1 on Tue, 2011-08-23 - 22:34
Febrile seizures represent the meeting point between a low seizure threshold (genetically and age-determined; some children have a greater tendency to have seizures under certain circumstances) and a trigger, which is fever. As well as this, parents caring for children who may be febrile, wrap them up in warm blankets in an attempt to comfort the child, unknowingly increasing their fever and therefore the problem.-Yochanan Berkowitz

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.