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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

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

Submitted by leya44 on Fri, 2011-02-04 - 20:54

Hi Jenai64,

You are not alone. I too have a 7 mth old who just had 2 febrile seizures in one day and 1 less than a month before those.  She's had them due to high fever about 104 each time and UTI both times. So many doctors and nurses tell us that febrile seizure is benign and she will be okay, but watching her going through the seizures, is so far the worst scene I've witness as a mother. I feel alone too. I met only one person whose child had febrile seizure (her child is an adult now and doing well), but people that surrounds me (family and friends) none has kids who has experienced this.  I really do not know how to accept this reality in my life.  I know I have too as doctors are telling us that she is most likely to have more and slight risk of epilepsy in the future than kids who never had a seizure.  Oh God I hope no more, but all we can do is pray.  She also had an EEG this week and it came out normal.  How long will it stay normal? I hope and pray forever. I wish you luck in your trials. Whether you are Christian or not, I will pray for you and your kids.  Take Care and God Bless! Leya44

Hi Jenai64,

You are not alone. I too have a 7 mth old who just had 2 febrile seizures in one day and 1 less than a month before those.  She's had them due to high fever about 104 each time and UTI both times. So many doctors and nurses tell us that febrile seizure is benign and she will be okay, but watching her going through the seizures, is so far the worst scene I've witness as a mother. I feel alone too. I met only one person whose child had febrile seizure (her child is an adult now and doing well), but people that surrounds me (family and friends) none has kids who has experienced this.  I really do not know how to accept this reality in my life.  I know I have too as doctors are telling us that she is most likely to have more and slight risk of epilepsy in the future than kids who never had a seizure.  Oh God I hope no more, but all we can do is pray.  She also had an EEG this week and it came out normal.  How long will it stay normal? I hope and pray forever. I wish you luck in your trials. Whether you are Christian or not, I will pray for you and your kids.  Take Care and God Bless! Leya44

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

Submitted by LolaSebMom on Sun, 2011-02-13 - 17:07

My daughter is 20 months and started having febrile seizures at 10 months.  Her first two were 17 hours apart.  She has had 5 total, with the last she needed medicine to break out of and lasted over 20 minutes.  We have made some serious changes since then, no daycare - hired a nanny, the worst part is I am so afraid of letting her play with other kids except her older brother, who is almost 4 and has never had a seizure *fingers crossed*.

 After the last seizure we talked to her neurologist about Keppra.  If her seizures continue at the rate they have (all have been typical, under 4 minutes, except the last one) then we will seriously consider it.  She recently had a normal EEG so we are waiting to see if the other changes we made will make a difference.  Our neurologist thinks it might be worth it if they continue but the epilepsy doctor does not.  It basically ocmes down to what the parent is comfortable with.  The seizures are so emotionally draining that maybe they should be giving the parents valium instead of the kids (just kidding!)...

My daughter is 20 months and started having febrile seizures at 10 months.  Her first two were 17 hours apart.  She has had 5 total, with the last she needed medicine to break out of and lasted over 20 minutes.  We have made some serious changes since then, no daycare - hired a nanny, the worst part is I am so afraid of letting her play with other kids except her older brother, who is almost 4 and has never had a seizure *fingers crossed*.

 After the last seizure we talked to her neurologist about Keppra.  If her seizures continue at the rate they have (all have been typical, under 4 minutes, except the last one) then we will seriously consider it.  She recently had a normal EEG so we are waiting to see if the other changes we made will make a difference.  Our neurologist thinks it might be worth it if they continue but the epilepsy doctor does not.  It basically ocmes down to what the parent is comfortable with.  The seizures are so emotionally draining that maybe they should be giving the parents valium instead of the kids (just kidding!)...

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

Submitted by Jamieusmc on Sat, 2011-02-26 - 20:51
I'm sorry you and your children are going through this, so is my 17mo and it's terrifying!! I'm glad I found this bc she has had 5 complex febrile seziures in 5 months her first one on her 1st birthday. They have resulted in over 19 seziures the most she has had at a time was 8 in 4 hours she was hospitalized for 2 days and the least she has had is 2 within an hour. Some of Hers last over 10mins and like your 3 child she does not jerk, her eyes go up to the right and she goes limp with an occasional twitch of a leg muscle on one side of her body. She has an EEG on thur and I'm really concerned. Her last 5 seziures have been at 100.9 and 101.0 Her last seziure was interesting because he started saying Wha Wha Wha Wha during her seziure really fast for a couple of seconds. This is strange bc she can't talk she only can say mama dada!! She has a 10month delay in speech and has a therapist to help her. I'm sorry I can't give you any advice on medicine but you aren't alone!!

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