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4yr. complex febrile but just had 2 seizures w/out fever please help!

I am in desperate need to find answers for my soon to be 4yr old daughter. She had her 1st febrile seizure when she was 5mths. it lasted 55mins. she was put on phenobarbatol but found to be allergic & switched to keppra & giving diastat to give at the onset of an episode. She had 2more prolonged febrile episodes (both 3mths apart) 1-45min & 1-30min both times in witch we spent a week in the PICU. after discussing with her doctor that we wanted to take her off the med. not only because it was not stopping the seizures but she was having horrible side effects (nervous rocking & she went from being a sweet & cuddly infant to screaming and not wanting to be held or touched for that matter she just wanted to be in the swing) so she was switched to topamax.

The topamax seemed to work in the beginning,if she did have an episode it was more average in time 5-10min. all though they did seem to come way more frequently. shortly after her 1st birthday we moved from michigan to florida & that meant a new doctor. her 1st seizure she had down here was again a prolonged 1 in which the dose of topamax she was given was increased to 1am&2pm.. she went about 4-5mths. seizure free then again another prolonged episode but this time it was followed up by mini cluster seizures in which she would just space out. again the dose was increased 2am&pm. As time passed and it went back to shorter episodes and the doctor just upped the dose again to 2am&3pm. we then started to notice she was not progressing with the rest of the children in her daycare and regressing we expressed our concerns to her doctors who said not to worry about it that some children don't talk well until they are almost 3 & he never heard of that as a side effect. she was also very tiny compared to the others her age we were also told not to worry.

The day of her 3rd birthday landed us in the emergency room due to yet another prolonged episode with mini clusters to follow that they could not get to stop and we were transfered to the local children's hospital to spend a week in the PICU. Due to her doctor taking her off the topmax and switching her to depakote which he had been waiting to do but had to wait until she was 3, when I asked what the difference was since she had been the same size since she was 2(she still fit in some 6-9mth bottoms & hovered around 18-22lbs.) I was never giving a straight answer but the med seemed to work so we left it at that, plus her speech started to come back as well. she had 2more average seizures both times in which the doctor just increased the dose both times so we went from 1pill a day to 3pills a day. we recently visited her doctor where we expressed our concerns that we were doing the same thing but just with a new med. & expressed our concerns that the med was not stopping the seizures so what good was it doing giving it to her. not to mention the how hard it is having a child that has known how to swallow pill like an adult since she was 1 and having at least 6 EEG's & MRI's which showed us nothing, & to top it off she was seeming to regress again. we were told that that was not an option and the next step we were to decide on was whether to stay the course or up the dose to 2am&pm.

We went home that night & talked about it with our families & wanting to get a second opinion we decided that we would slowly ween her off the med. ourself and see what difference it would make since she has been on medication all but 5mths of her little life. 3months later she had been med free for about a week and we had our 1st seizure this time to my worst fear w/out a fever we took her in to be seen & they did not find anything to be wrong with her. I called the doctor to inform them of what had happened and my concerns. I asked if we could have a EEG & MRI done since she has never had either with out being on some type of medication, they agreed. here we are 1 week later and this morning we were awakened to the sound of her having another seizure on the baby monitor, this one again with no fever! I don't know what to do and everyone that we have come in contact with say they have never heard a case like hers, I know she can't be the only one out there. Why is it that all of her tests before did not show that she was epileptic or is this something that we have caused by taking her off the medication?

I can't put into words the way I am feeling now, but febrile seizures do run in my dads side of the family and I had them when I was growing up they skip every other child all the way back to my great grandpa except me and my father we both had them. The doctor say it is just a coiencendence but nobody had had anywhere near the severity of hers so I have no one to go to for past experience. If anyone has anything that might be helpful to us I would greatly appreciate it. We really do not want to put her back on depakote since she has started to show development again and it was not keeping away the seizures anyway. Please help!

Comments

Re: 4yr. complex febrile but just had 2 seizures w/out fever

I am so sorry for what you are going through. My daughter was two when she started having seizures. (she almost 9 now). Her first two seizures were at home. She fell to the ground and was unconcious,with no movement. She was hot to the touch. She came to after 3 mins and then went out again. When the medics got to our house they said she must have a fever as she was very hot to the touch. She didnt have a fever. She was adimitted to the peds unit for three days. During that time she had two more. All of her tests came back normal. 14 episodes in 10 days. Still test came back normal. This went on for few years. She was put on trileptal three months after this started happening for seizures, but nothing showed on tests. This was very confusing. It was finally explained to me by several different neuro's that it is possible to have seizures/epilepsy and still have normal test results. All it means is that they aren't having seizure activity at the time of the test. My daughter was on trileptal for the first four years. She had very little side effects. She now is on lamictal and has had no side effects.

4yr. complex febrile but just had 2 seizures w/out fever

I feel your frustrations.  My heart for sure goes out to you. My five year old has had seizures since he was 7 months old.  Started out febrile.  He had two seizures under 5 minutes in a span of two days.  Then he had a third seizure that lasted for over an hour.  We were in Childrens Medical Center for five days.  They ran every test and found nothing.   He would have febrile seizures from time to time as he got older.  None were the hour long ones.  Then right after he turned four, he started having seizures while he was asleep and not sick at all.  Lasting 20+ minutes each time.  Did EEG, MRI Cat Scan.  Found nothing.  Put him on Keppra.  It made him so violent.  He started to hit and fight.  And after being on it for three weeks, he had a seizure that lasted two and a half hours.  He stopped. Then he started again.  This time for another two hours.  They ended up putting him in a coma to stop them.  Nine days in the ICU.  Took him off Keppra and put him on Trileptal.  Started having drop seizures.  Sometimes three a day.  Took him off that and put him on Topamaz.  Still having seizures.  Now, he can not sweat because of the side effects of the Topamaz and he is having febrile seizures just by being too hot. I also noticed that his development started to slack.  His dad and I are pretty much ready to take him off the medications. The other medicine that he can be put on is Depakote.  It causes liver failure.  He has been the one in however many million on the drug to have the worse side effects every time.  How do I put my child on that knowing that he is probably the one in harm?  He has never had an abnormal EEG or MRI.  So, what do we do now?  I want a doctor that wants to find the cause and fix that problem rather than putting a bandaid on a gunshot wound. 

Re: 4yr. complex febrile

hi,

sorry for what you and your family are going through.  the best i can advise is to ask for a referral to either a pediatric neuro, or epileptologist.  Because of the age of your child, expect to have the dosage of the medications to change.  the weight changes so the medicine has to change.

The issue of seizures without a fever.  that is the primary reason for the referral.  there are to many variables to consider without further evaluation.  i wish you well.  i hope it helps.   rikk

Re: 4yr. complex febrile ----BEWARE, no fever means not febrile

We have been dealing with seizures for a year and a half and they always said they were febrile, even when he had no fever. Last week we finally found out that if there is no fever, they are not febrile seizures . It is a seizure disorder. He was 1 week in the hospital and they finally got to this conclusion. He is 5, they said that usually younger kids have febrile seizures and they usually stop around this age.  He is now on Keppra.

seizure episodes

Seizure is most common in patient with a family history of seizure while giving birth..But be careful since seizures can damage our brain. For example once the baby is in seizure episodes. He certainly lacks oxygen in the body, specifically in the brain. The best thing to do while having that seizure episode is to put the baby in the floor while protecting his head with pillow. Make sure that he still has a patent airway. This is to avoid fractures while in seizure. Most of all, prayer is a great help. My patient's and some of my friends children, experienced the same thing. You are not alone my dear! GOD is good... My friends baby is 6 yrs. old and he experinces the same thing. I have a good friend who is now 20 yrs. old. He has an epilipsy like seizures but he's on medications now. He is well enough just like the normal boys in town. You'll get through this tough time.. Just believe in GOD..

 

 

 

my daughter has febrile seizures

I am sorry to here what your going through. it is hard to hear this story because it sounds a lot like my daughter. she started having febrile seizures when she was 7 months old. she has been hospitalized at least 10 times in three years because her seizures last 1 to 3 hrs. at first her eyes just rolled back and I couldn't get her to respond to anything. but they have started to get worse. now she actually stops breathing during the bad ones. the first med that we tried was phenobarb. that didn't stop them so we tokk her off that. now she uses kepra, zonisamite,clanazipam on a daily basis. plus when she starts to have a seizure we give her diestat and versed (madazalam). I have  been looking for the right answer to stop my daughters seizures. I have looked into vagus nerve stimulation but the people who get that are usually 12 and older. My daughters neuro. wants us to try the ketogenic died but I have heard good and bad things about that. I have started looking into canabas oils that have had good results with other kids who have not responded to other meds.