Repeated Febrile Seizures

Sonya - posted on 02/10/2013

Hi everyone, I am so glad to have found this board. My son is 4.5 years old. He had 1 simple febrile seizure 6 weeks ago. He was lying on the couch looking kind of bad, he told me his head hurt, I took his temp- 99.3 and decided to give him some Tylenol. After I have it to him. He had a seizure. It was absolutely terrifying and I was home alone with him. The next seizure happened last week. He had been fine most of the day, my mother was over and wanted to take a walk and asked him to come along. He said he was tired, but he went. At the end of the walk he was whiny. We have a very long staircase at our house. He went up the stairs and came toppling down head over heals, stopped at the landing, and preceded to turn blue as one side of his mouth twitched. I have never been so horrified in my life. By the time the paramedics got to our house (4 min later) he was awake and coherent. He had a fever or 101.3. The theory is that he seized at the top of the stairs. I can't sleep. I can't stop looking at him. I am terrified to let him go to school tomorrow- he is barely over this bug. He has an MRI at the hospital which was normal. The EEG they did was called inconclusive. The doctor said it showed brain activity that is consistent with a lower seizure threshold which is consistent with kids who get febrile seizures. Also, ther is no reason to think epilepsy is a favor at this point. I am trying to find more information about febrile seizures. I have found studies showing that about half of people who have them are anemic. Also, I have read that they think the seizures may actually be caused by hyperventilation rather than fever. There are studies to treat febrile seizures with a 5% carbon dioxide oxygen mix- of course this does not prevent them in the first place, but may lessen the length of them by 30%. I can post link later if anyone wants them- typing on my phone right now. My son seems to have gotten sick in the end of November and its like he has not really gotten 100% better. I plan to test him for anemia and food allergies this week. Not sure it will help, but I can't sit here and wait for another one without trying something. My son is not allowed to go up and down the stair alone anymore. I don't know if I will ever get over it. I wish I could make him wear a helmet and stay home from preschool every day!

Kiara - posted on 11/27/2012

HI guys! Sorry I did not see the question before - PFAPA is some sort of periodic fever that nobody knows the cause yet.. there are a lot of speculation and some steroid treatments, but of course, with all the side effects, etc etc... My daughter had her first seizure at 18 months 3 hours after immunizations. Her second was 3 months later with cocksakie virus... seizure free ever since (thank God). Last year was very difficult since she had fever after fever and was sick ALL THE TIME. Ever since this January when we started treating her for allergies and asthma, she has been very good and she drinks a lot of probiotic (Danactive). Coincidence or not, she has been SO HEALTHY and has no fever, ear infection, since February! Last high fever was May, 3 straight days...no idea why since she had no other symptom, but she has been great since them! As mothers, we always wonder this or that... just do whatever you heart tells you and what makes you more comfortable. In my case, I went to every single specialist and ruled out everything! God bless you all!

Stephanie Marie - posted on 11/27/2012

Hey everyone, I'm new to this site. I'm so glad I found it though, looking for someone who can relate to what we've been through:) back in July of 2012 my dd at the time 18 months old had his FIRST febrile seizure, it came out of no where. I put him down for his afternoon nap and he spiked a fever in his sleep( not sick with anything at he time) by the time we made it to the ER his temp was 104, the doctors kinda shrugged that one off with it being his first and him having no other health issues. Well the first of this month (nov 2012) we had found out he was sick with strep and had been running a high fever ( 101-105) for 4 days straight by the time another febrile seizure happen. This time his temp was 103.2, we ended up staying all night at our local children's lavine hospital for him to be monitored because unlike his first seizure this one the doctors called complex. ( we also found out he had croup on top of strep). The twitching/shaking lasted maybe 5-6 mins BUT it took him close to an hour to regain all of what was going on around him, he just kept rolling his eyes and moaning while his body legs/arms where still pretty stif. Last seizure 20 mins later he was awake and alert. Well ALL his blood work and EEG came back normal. We have the option to get an MRI done to just see IF anything can be caught. But we have NO one in our families with history of any kind of seizures at all. So I think we are going to hold off and hope and pray that this was the end of all seizure activity. This mommy can't take much more :-/

Sheila - posted on 04/23/2012

Hi Kiara, what is PFAPA?

Kiara - posted on 04/22/2012

Have you ever thought your son could have PFAPA? It sounds like that to me

Sheila - posted on 04/22/2012

My 16 month old boy started having febrile convulsions when he was 11 months old. To date he has had approx. 16 convulsions. There seems to be a pattern emerging, every three weeks he has a fever and convulsions. We have taken him to A&E each time and has being admitted to hospital for observation. Every time he has had the same diagnosis, inflamed throat, URTI. He is seeing a specalist for the convulsions but after reading your post regarding allergies we are following a different course of enquiry as to why this is happening every three weeks. I am very pleased to have found this forum for support, watching your child suffer febrile convulsions is very alarming and personally this situation has left me a nervous, paranoid wreck.

Amanda - posted on 04/16/2012

My sons had 8 ts in the last 6 months beginning with bronchialitis at 11 months old. He was hospitalized for 3 days.

Amy - posted on 10/14/2011

I wanted to check back in and let everybody know that one year after our ordeal began... be have solved the mystery of the unknown fevers causing my daughter's seizers! After some investigation we learned that we had a severe water leak in our home causing mold in the sub-floors of our home. I began looking at our daughter's first illnesses and saw they began to occur just 5 weeks after we moved into this house. I googled mold allergy and read that a severe mold allergy will cause sinusitis, URIs, and fevers... the only 3 things that have made her sick since she was 10 months old. Her worst illness (viral meningitis/encephalitis) occurred from an un-resolved sinus infection that she contracted last September... which happen to be a bad month for mold allergy sufferers. Anyway, we had her tested and the only thing she is allergic to is mold. We have our sub-floors being replaced, and her DR (still continuing the phenobarbital) has also prescribed a steroid nasal spray to control the allergy. Since being on the nose spray, we have been fever free... therefore seizure free. She has had low fevers (not higher than 100) but because the steroid is working to control her bodies response to the mold, she is not spiking these crazy 105+ fevers every couple weeks like she used to. It has been a true blessing and we are about to celebrate 3 months SEIZURE FREE!!!! In the past year we were not even able to go 3 weeks! WOO HOO! Good luck to all of you... and for those of you who say that you can't stop worrying about your baby, don't feel bad! I still sleep on my daughter's floor at night- some things in life are just too precious to take for granted and I know when I am ready, my bed (and husband) will be waiting for me :)

Melissa - posted on 06/27/2011

I am really excited about going...I try not to get my hopes up but they are. Did they change medicaiton or did she have a operation? I just wonder what they are going to do with my lo. She is doing great...other than her seizures she is a perfect little girl..except a little mouthy...but thats ok. :-0!
Sure you can share the link...even though I hate watching them..but I have learned a lot from them.
We are in Oklahoma City

Jamie - posted on 06/27/2011

Yes it was! They are really good with the kids! I have nothing negative at all to say! : ) where do y'all live? We live outside of Brownwood... Hadley had atypical febrile seizures prolonged, multiple and focal... I have a video on Utube of her last seizure it lasted 50mins it started as focal and then generalized... I can give you the link she has been seizure free for 10 weeks which is the longest she has ever gone ! : D !!!! Hows your lo been?

Melissa - posted on 06/27/2011

Thank you so much Jamie. Was your experience a good one. I have heard many good things about Cook's.

Jamie - posted on 06/27/2011

My daughter was just at cooks for her seizures we go back in September I hope everything turns out good with your lo!

Melissa - posted on 06/27/2011

Thanks Jenni for your kind words. I hope that is our case but she has been having them with no fever for the last year or so. She also has them with fever to so.....she is currently on a new medication and we are going to Cook's Childrens hospital in Ft. Worth, TX. in a few weeks for additional testing so hopefully we will find out some answers we are seeking.

Jenni - posted on 06/27/2011

Hello Melissa,

I had them quite frequently for a year or more as a child, I believe it happened between the ages of 1 1/2 and 3. My Mother tells me that they only happened within my first hour of sleep at night. I would suddenly spike a fever and go into a seizure. I outgrew them, it wasn't epilepsy and very much related to fever. They never found out what was causing the fevers (even though I went through all sorts of testing) but I want you to be hopeful that she will grow out of them too, hopefully. After I stopped having them I never had another. My children didn't have them either and there seems to be no long term effect at all. Best of luck to you and dd.

Jenni

Kiara - posted on 06/19/2011

My daughter is 18 months and has had her 2nd febrile seizure in 3 months! I am desperate and I cannot relax EVER! I am taking Lexapro since the first seizure and when I was starting to recover from the trauma, there comes the second one. I keep checking on her every hour to make sure she has no fever, she is breathing...anyway, I have been a total mess and I think I need help! I am glad I am not alone though! I will be praying for all of you who struggle with this problem and for our little ones to be out of this soon enough!

Do - posted on 05/03/2011

Hi, Amy

I mean the way of treatment. It can be medications (drugs) or others such as surgery or special

diets. If your child seizures are only combined with fevers, you do not need to worry much, they are febrile seizures. But if seizures occured without fever, then there is possibility of epilepsy. Epilepsy related with febrile seizures can be varies in severity. It can be mild as generalized epilepsy with febrile seizures plus to severe as Dravet syndrome. Here are some clinical diagnosis tips for Dravet syndrome I have found:

1. Prolonged beyond 15 or 30 mins

2. Unilateral (only one side of the body)

3. Mainly clonic (shaking without stiffness)

4. Frequent and intractable

5. Precipitated by low fever, ofen below 38oC

6. Early onset (before 1 year of age)

7. Concurent with non febrile seizures

The diagnosis is nearly certain if intractable myoclonic jecks and deterioration appear within 1 or 2 years from onset

Amy - posted on 05/03/2011

What do you mean, "therapy"?

Do - posted on 05/03/2011

I think this link is very useful:

http://www.epilepsy.org.uk/info/syndrome...

and http://www.ncbi.nlm.nih.gov/pubmed/19203...

Do - posted on 05/03/2011

I read from several sites that some kids have numerous febrile seizures and they eventually outgrowth of this. I would not worried much if my son recently had a seizure at very low temperature (37.4oC during the seizure and after the seizure it is down to 36.9oC). So, we are on the way to diagnose his problem.

To Amy Dahmke: My son also have multiple seizures during one illness. So, it means he has complex febrile seisures. It is important to find out the reason to have a suitable therapy. For some syndromes, the prognosis (outlook) will be improved if therapy is started early

Amy - posted on 05/03/2011

Thanks, Jamie! My daughter has always had the seizures with a fever and a viral infection. Right now they think she has a slight upper respitory infection. Her white blood cells are in normal range, no UTI, chest Xray was clear, and no strep. THe status epilepticus is a period of time where the body is in constant convulsions. On that day they drilled a stunt into her leg in the ambulance to give her addivant, they loaded her with diastat and phenobarb, but nothing would stop the seizures. It was the longest 4-6 hours of my life. This sight is so wonderful. For the first time since September I feel like I am not alone. THANK YOU!!!

Jamie - posted on 05/03/2011

Hi Amy! I posted above my LO has had 4 seizures (twice ) within a 1 hour span, we where never told that about her multiple seizures but she has a 20min partial seizures that generalized and lasted 30min more ,so 50min total, ( i videoed parts and showed it to her pedi) anyways we were told then that its a good sign that up to that point she has just had them with fever, but its a bad sign because it can lead to developing seizures without fever. The longest she has gone without a FS is 8weeks the shortest is 1 week (not counting clusters) she is not on meds but we see a pedi neuro in two weeks. Her temps rectal range from 99.6-102.4 when she has seizures....hey so what’s "status epilepticus" I hope all our little ones do not have anymore!! thats a nice thought right?!

Hangdhkhtn@yahoo.com Dothanhvan
I am glad that your LO has some fevers with out seizures to give yall a break! It always makes me wonder why some fever cause seizures and some don’t...my LO has had a fever of 103.7 and no seizure and then 99.6 and seizure!!

So pretty much every time your LO had a FS was with sickness? I am asking because twice they couldn’t find out why other then "probably something viral" Is any of yall related to vaccines? My LO had her first FS 12hrs after her 12month shots

Mellissa how far apart has your LO FS been?

Amy - posted on 05/03/2011

OMG!!!! SO GLAD TO HAVE FOUND THIS SITE!!!! My daughter had her first febrile seizure at 13 months. She had another 2 weeks later and was listed as a "status epilepticus" and placed in a coma by the DRs to relax her body. A spinal tap showed viral meningitis and encephalitis. She was hospitalized for 4 days and put on phenobarbitol as an anti-convulsant, and I took 8 weeks off of work while we worked to bet her back to a baseline for motor and language skills. She was taken off the meds in November and had another seizure on November 13 (temp of 101.2). She was placed back on the meds, but had 1 seizure in January and 2 more in February. The neurologist decided that the meds were not affective and on March 15th we opted to take her off SLOWLY. Then yesterday she had 2 more seizures, one at 2:35PM and another at 9:35PM (both lasting under 5 min so no diastat was given). Her temp was 104 for both seizures, but the 2nd one we took her to the ER since it was the 2nd one. Moral of this is that they said it's not typical to have more than one per illness, so they have said she could go on to develop epilepsy. Any comments on this??? Not sure what to think at this point, just hoping somebody can help me understand this.

Do - posted on 05/02/2011

hi Jamie,

My son is 18 months, 2 weeks now. His started to have febrile seizures when he was 10 months



Seizures record

First seizure: (18-08-2010): he had fever 3 days due to tonsillitis. Fever is high (up to 39.8oC). He had 3 fits of seizures seperating each 24h. The first seizure was maybe 5 to 8 minutes. We were too shocked to remember exactly. During the seizure, his head is upward, eyes stared, body stiffness without shaking, he might stop breathing (It is similar to partial complex seizure). We went to the hospital and they said he had a febrile seizure, then they sent him home after some tests (blood, urine..) and giving us some medication including Ibuprofen. But his fever was still going high. About 24 h later, he had another seizures. This is maybe generalized tonic-clonic (all body stiff and shaking), this lasted about 2-3 mins. And 24h later, another one similar to the second one.



Second seizure: (15-10-2010): He had high fever nearly 4 days with 2 fits of seizures (24h separating). Both were like generalized tonic, clonic, lasted 1-3 minutes.



Third seizure: (21-12-2010): he had high fever due to bronchilitis. He had 5 fits of seizures in only 2 days. All maybe were generalized tonic clonic, lasted 1-3 minutes.



Forth seizure: (20-01-2011): He had high fever due to tonsillitis for 1 day, had two fits of seizures within 8 hours. All maybe were generalized tonic clonic, lasted 1-2 minutes.



Fifth seizure: (11-04-2011): He had high fever due to mild pneumonia and gastroenteritis. In the first day of sickness, he had 3 seizures within only 8 hours. The first and the second maybe were generalized tonic clonic, lasted 1-2 minutes. But the third one was unsure (I thought he was sleeping but when I checked him again, his trunk (not hands and legs) was stiff).



Sixth and seventh, and eighth: After 2 weeks from the fifth, he had a seizure at very low temperature (37.4oC). This time seemed he did not have fever although he was having respiratory infection. All maybe were generalized tonic clonic, lasted 2-3 minutes.

2 days later, he had a fever (38.2oC) and seizure which is quite strange. During the seizures, he his eyes rolled upward, lost consciousness, but body and breath were normal. It lasted about 8 minutes.

2 days later, he got another fit, this was generalized tonic clonic, about 2 minutes.



Sometimes, he also had fevers without seizures. These fevers are short and easily controlled by Ibuprofen.

He had first EEG test after his fifth seizures, it was normal.

As I know, with dravet syndrome, EEG is usually normal in the early onset, and MRI or CT scan can not help to diagnosis. Maybe, gene test is necessary but it may take time and money. This friday, I have an appointment with a doctor, I hope we can share to overcome this scary thing. I am still hoping he just has febrile seizures, or just a mild epilepsy. I am not ready to accept if something horrible occured to him and can not imagine our life if he has somthing like Dravet syndrome.

Jamie - posted on 05/02/2011

Hi! ok I am soooooo glad I found this post!!!
My LO started having febrile seizures on her first birthday 7 months later she has had 6 febrile episodes resulting in over 14 febrile seizure ( prolonged longest 50mins,multiple twice 4 at a time, and focal which then generalized) I have been trying to find people that can relate one person sent me a link saying her friend had a LO thats situation was similar to mine and then she sent me a link to Dravet syndrome which I had never heard of ( sooo scary!!) This month she has started having staring episodes with out fever only 3 but I am freaking out!! We go to a pedi neuro May 16th..I am hopeful though that it is just FS because all her tests 40min EEG, MRI ,CT scan came back normal : )
What has been ya’ll kiddos temperature range? I hope I’m not intruding but it is so hard to find people going through the same thing!

Best wishes to all your little ones and no more seizures!! : D

Do - posted on 04/28/2011

was there anything you did to control ryans fever? I really did not know how to prevent my son fever. Also, could you please let me know which type of seizures ryans had?

Penni - posted on 04/28/2011

ryans first few only lasted around 3 to 5 mins but became longer around 7 mins.. sometime 2 seziures in 1 day he also went through eeg and was all clear... lucky for me ryans fevers are not as frequent and i think he is less likely to have another seziure...

Do - posted on 04/28/2011

My son's fever usually came from respiratory infection (most upper and sometimes lower tract). It seemed like he is always in sick. We had many medication for his cold/flu but it is not better now. He had first EEG at 14 months - Nomal. His second EEG was just last week, and we will know the result next week. His FS are not only frequent but also various in forms. Usually he had short (2 mins) Grand mal, but his first seizures was like absence/tonic and lasted from 6-8 minutes. His last seizures was also long (9 mins) and like absence seizures. How about Ryan seizures?

Penni - posted on 04/28/2011

ryan had a few seziures around that temp..if his sezures are usually only fever related then if you can find out what is causing the fever than it will make it easier to prevent the seziure..our stupid doctor spent too much time putting my son on meds that did not work instead of finding out what was the cause of his fevers 8 mths every 2 weeks my son would get a fever once we knew what it was we took him off the meds that he put him on...

Do - posted on 04/28/2011

My son is 18 months now and had 6 FS since he was 10 months. Although most came from high fever, the last one occured just last weeks with very low temperature (37.4oC). I am so nervous whether he has Dravet syndrome or not because his seizures are so frequent.

Melissa - posted on 01/05/2011

It can vary...depends on sicknesses. We have went 6 months with no fever/seizure but she has also had 3 seizures in one day. I know the teething days were horrible because her fever would come out of nowhere...which is usually how it happens.

Penni - posted on 11/17/2010

Ryan is now 3 yrs old he turns 4 in april...How often are her fevers... ryan use to get fever every 2 weeks..

Melissa - posted on 11/17/2010

Thanks for the comment. So how old is your son now? I am glad to hear he has been seizure free for two years...hopefully that will be us soon.

Penni - posted on 11/07/2010

my son had 14 febrile seziures in 12 mths..This is because his temperatures were so aggresive and rasied very quickly that his poor body could not cope.. almost 2 yrs on no more febrile seziures or aggresive temperatures.