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12 year old with complex febrile seizures

Wed, 09/09/2009 - 09:25
I have searched everywhere trying to find any parent that has had a child with febrile seizures over the age that most children outgrow them....to no avail.  My son has had complex febrile seizures since he was 13 months old, he is now 12 and half years old. His latest seizure was yesterday and once again accompanied with a fever due to a case of strep throat.  Our neurologist told us a year ago that my son is in the 5 percent of children that have them over the age of 7.  But, I, however can not find any child/parent that has had our same experience.  Will my son ever outgrow these seizures?  I am disheartened.  I had been told for years that he would, but he has not. Why is he not outgrowing them, when most children do?  Please.....any answers?  

Comments

Re: 12 year old with complex febrile seizures

Submitted by carmenk on Wed, 2009-10-07 - 15:52

A major trigger for my son is temperature, either fever due to illness or elevated temperature from a bath that is too hot or from the heat of the summer.  His internal temperature guage is also very sensitive and his body temperature goes up very easily and quickly.   When he is really sick and it is hard to keep his temperature down, I stagger IB and tylenol, alternating every 3 hours.  That way he is always covered with something to keep his temperature down but is not overdosing on anything.  We have to really watch the summer heat and the hot sun, it triggers a seizure very quickly.  So you are not alone that is for sure.  

 

I don't know, there must be a point in which the word febrile must be replaced with trigger?

A major trigger for my son is temperature, either fever due to illness or elevated temperature from a bath that is too hot or from the heat of the summer.  His internal temperature guage is also very sensitive and his body temperature goes up very easily and quickly.   When he is really sick and it is hard to keep his temperature down, I stagger IB and tylenol, alternating every 3 hours.  That way he is always covered with something to keep his temperature down but is not overdosing on anything.  We have to really watch the summer heat and the hot sun, it triggers a seizure very quickly.  So you are not alone that is for sure.  

 

I don't know, there must be a point in which the word febrile must be replaced with trigger?

Re: 12 year old with complex febrile seizures

Submitted by lesevonnne on Wed, 2009-10-07 - 23:53

Thank you.  I have had many battles with school nurses over the years regarding just this same problem.  Is your son school age?  Physical education has posed quite a problem for us, as my son's body temperature rises quickly as well. I had a school nurse tell me one time that physical activity can NOT cause a rise in body temperature. This from a woman who has a masters degree in nursing.  And although he has not had a diagnosed seizure during physical activity, his face is always extremely flushed and he is always at the point where a seizure seems probable.....and also to the point of teachers telling me and the nurse that they don't feel comfortable with my son being in the class.  He has been told to sit out (by the decent p.e. teachers) to the point where teachers tell us that there is nothing wrong and that he has to participate or flunk.  I have had people tell me to check his blood pressure due to the intense coloring on his face.....and we have done just that.  Blood pressure and everything is just fine.  We can not be the only few that are going through this......Thank you all so much....For the first time, I truly feel....not alone. 

Thank you.  I have had many battles with school nurses over the years regarding just this same problem.  Is your son school age?  Physical education has posed quite a problem for us, as my son's body temperature rises quickly as well. I had a school nurse tell me one time that physical activity can NOT cause a rise in body temperature. This from a woman who has a masters degree in nursing.  And although he has not had a diagnosed seizure during physical activity, his face is always extremely flushed and he is always at the point where a seizure seems probable.....and also to the point of teachers telling me and the nurse that they don't feel comfortable with my son being in the class.  He has been told to sit out (by the decent p.e. teachers) to the point where teachers tell us that there is nothing wrong and that he has to participate or flunk.  I have had people tell me to check his blood pressure due to the intense coloring on his face.....and we have done just that.  Blood pressure and everything is just fine.  We can not be the only few that are going through this......Thank you all so much....For the first time, I truly feel....not alone. 

Re: 12 year old with complex febrile seizures

Submitted by burrowsj on Fri, 2009-11-13 - 15:28
My son just turned 8 and had a fever seizure on his birthday. This is his 8th fever seizure. He had his first at 19 months and his last just a few weeks ago at age 8. Prior to this, he hadn't had one in a year and a half so I thought he had outgrown them. I have been soooo stressed over this...as you all can relate to. I know of NO ONE who has this same thing and searches in the internet all say they should end by age 5. He had an EEG which was normal. He only gets them when he has a fever and only in the first 24 hours of his fever. His body temperature is normally low...about 97. His father had one fever seizure when he was an infant, but never had another. It is said to run in families. The doctors are stumped. The next step will probably be an MRI. My son is in first grade and highly intelligent, reads at a 5th grade level, reads 11th grade words, mathematically bright, and walked and talked early, very good student, social...so apparently they are not damaging his brain. But the STRESS!!! I am so glad I accidentally happened on this site because I thought I was completely ALONE in this! Thank you to all for sharing your stories. I just want my son to outgrow this. It is my prayer every waking moment of my day. I have also noticed that this seems to be affecting the boys...haven't seen any girl stories here. Hmmm...interesting.

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