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

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?

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?

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?

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!!

Re: Does 11 febrile seizures under 2years old

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?

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

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