12 year old with complex febrile seizures

Re: 12 year old with complex febrile seizures

Submitted by lokilewis on Wed, 2011-04-27 - 23:19

My son started to have seizures at around 2 years old. This continued for two years with multiple episodes occurring almost every 5-6 weeks. This was usually 5-10 minutes in duration and his temperature was between 101-104 degrees during these episodes. We would put him in room temperature water to cool his body down from this high fever. The seizures were not jolting limbs as you usually see when a seizure is depicted. This was more of his senses shutting down. He would sit still and his eyes would drift to one side and would look endlessly in one direction. He would respond to you calling him but only with a simple response i.e. “yes”, “no”. Then he would have start to do what I can describe as a bad hiccup with saliva running out of his mouth. We have seen many Pediatricians and he has been to a Children's hospital twice for EEG test of which the results were normal. He has been to a neurologist once and her final prognosis was that this was something that we would want to prevent because he brain would learn to have them with the frequency of the episodes. This was something that we learned that was common amounts children as we discovered that he was having Febrile seizures. So now we knew what it was, however the question was what was causing the frequent temperatures. After two years we found through trial and error that his ear infections were causing this. And through a network of mothers and multiple emergency room visits we discovered that having tubes in his ears would prevent his infections which in turn would prevent the seizures. Tubes were inserted into his ears and he was episode free for a complete year. He started having them again, but not as frequently. This time it was once every 3-6 months. However, his temperature was not as high as before. This time 99-100 degree temperatures would induce the seizures. What we discovered was that he was getting temperature spikes with both excessive playing (hours of playing outside) as well as any viral infections. Of late it has been croup coughs that we have been alerted to as being a catalyst for his episodes, so now we look out for that. We have been in preemptive mode with watching him and checking his temperature during any excessive play or signs of illness. Basically if he was not running around like your average 5 year old boy them we would check his temperature. If his temperature was above normal we would administer children’s motrin with dosage based on his age and weight, then 4 hours from that we would give him children’s Tylenol with dosage of the same attributes. From this point we would have to keep vigil for about two days watching his temperature and keeping his core temperature cool with hydration of OJ or Gatorade. If he had an episode we would take him to the emergency room and have him checked out. Then we would schedule an appointment with his pediatrician so that his medical records reflect all episodes. Our son just did a 24 hour EEG and the findings were not conclusive. I still think that this area is somewhat of a mystery to the doctors. They said that his neurons were firing more aggressively than a normal brain would. And that he is pass being classified as being febrile. They have told his that he has a seizure disorder. And have suggested Keppra. My wife and I have done a little research on Keppra and are not too happy with the reported side effects. I noticed that there are some holistic options but we are not certain of it's effectiveness. One in particular is Bocapa Monniera. I know that there are some other parents out there with similiar stories. Just wondering why others have see or experienced or tried. I really hope someday that the medical field can consolidate and compile all the data from all the parent's and doctor's experience and knowledge and find answers alot quicker. Good luck to you all.

Re: 12 year old with complex febrile seizures

Submitted by khsings on Tue, 2011-08-23 - 14:05

Hi, my son is 7 (turned in June 2011) and just had his 12th febrile seizure....strep throat from the first day of school.  He had his 11th last month with Hand Foot and Mouth, caught from his younger brother.  His always occur with fever and it doesn't have to be high, like as low as 100.  He had not had any for about 1 year.  His then 9th and 10th ones came in the same type of way, back to back months.  Before that, nothing for a year and 1/2, thought he had outgrown them.  We were told just like you that he should be out of them by 6. 

His neurologist is GREAT! We have really liked him.  He has stayed away from wanting medication as long as they accompanied fever.  He had an EEG last year and was normal.  Now he wants another EEG and wants to discuss antiseizure medication.  "Not a necessity", but we need to consider it.  Then after 1 or 2 years free of seizure, come off the medication.  I am so sorry that others have been going through similar problems, but I am so glad not to be alone.  We have been told from the beginning it had a tendencey to be hereditary (I had 3/4 as a child and grew out of them) and that he's should be gone by 6.

His seem to be complex febrile seizures (after what I have read on this site), they have been known to last longer than 15 min. WIth averaging 2 a year over the past two years, I am trying to weigh the benefits of medications like depakote.  He is a very bright boy with (ofcourse I am biased) with high reading and math skills.  He is very quick witted and well rounded in sports, very active. 

Through reading all of these posts and other information, do we need to consider medication? Do we need to limit his physical activity, although his fevers and issues seem to only come through illness? Will depakote and others like it do more harm than good? These and other questions we are struggling with. Reassurance or information would be so appreciated.  I want to be as informed to the good and bad as possible for our followup with the doc.

I have the same worries. My

Submitted by y.belene@yahoo.com on Thu, 2015-05-07 - 04:14

I have the same worries. My daughter is 10years old and had her last febrile seizure when she was 10 years old and 5 months. I was also told that she would outgrew this. I refused to have her on epilepsy drug because she is not epileptic. Her eeg just came out today and it is also normal.  I have a friend who told me that she knows someone who had febrile seizure and it lasted til the girl was 12 years old.  She is now 20 years old and has no febrile seizures anymore. We hope to get there soon!