12 year old with complex febrile seizures

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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 melchris on Fri, 2009-12-11 - 09:15

My son is 8 (severe autistic and SLD) and used to have tonic clonic type "febrile" convulsions which turned into status seizures on several occaisions.

He too went a couple of years with illnesses and no related seizures until 18 mths ago when he had a tonic clonic when ill and since then has gone back to having out of control fevers at the sign of any illness and accompanied by partial seizures (which we still have to convince his pedeatrician of)

I have gone through years of doctors brushing it off as febrile convulsions and not taking it seriously but it should not be happening anymore.

I did not think it happened to anyone else, so it is good to meet others in similiar situations.

My son is 8 (severe autistic and SLD) and used to have tonic clonic type "febrile" convulsions which turned into status seizures on several occaisions.

He too went a couple of years with illnesses and no related seizures until 18 mths ago when he had a tonic clonic when ill and since then has gone back to having out of control fevers at the sign of any illness and accompanied by partial seizures (which we still have to convince his pedeatrician of)

I have gone through years of doctors brushing it off as febrile convulsions and not taking it seriously but it should not be happening anymore.

I did not think it happened to anyone else, so it is good to meet others in similiar situations.

Re: 12 year old with complex febrile seizures

Submitted by kscaringmom39 on Wed, 2009-12-16 - 09:41

I am glad to have found this site and this discussion! I have a ten year old son who still has febrile

seizures, so I know we are not alone! Like many other people have posted, this condition was supposed

to "go away" by now, but hasn't and it is really frustrating!!! My husband and I have never had seizures,

febrile or otherwise, but our daughter did have one (briefly) with a high fever as a toddler and never had them

again. Hers may have been the result of a vaccine. Her vaccines were from totally different lots and batches since there

is three years between our kids ages.. Our son was not so lucky, he had adverse reactions to his vaccinations--life threatening and had to

be life-flighted, intubated, etc, He also suffered from head banging, jerking movements in his sleep, bleeding

from bowels, sepsis, trouble swallowing and was considered to be on the autism spectrum. So when doctors

told us that it was a coincidence that the vaccines triggered a fever, which caused the seizures, which was "perfectly

normal"--autism spectrum disorder as a result of the vaccines certainly is not normal!!! Being that this "coincidence" happened twice after vaccinations--and one ER doc confirmed

an adverse reaction, we quit vaccinating and sought help through a doctor specializing in treating vaccine-injured

children. We treated our son with muscle testing, allergy elimination, supplements, dietary changes, and as he

got older, I homeschooled him and his sister to keep her from bringing home extra illnesses which passed to him.

Chelation was tried with transdermal DMSA and he had fewer and fewer febrile seizures. We once tried daily Depakote

sprinkles in his applesauce, but he still had seizures and behaved inappropriately while on it. He only gets Diastat-rectal

valium for long lasting seizures that don't stop on their own.

His longest stretch without a febrile seizure to date has been 18 months, but he has had many fevers and viral illnesses, which

we slay by monitoring temp throughout the night and cycling Tylenol and Motrin.

Since he had been doing so well, I enrolled both kids back into regular school and just a couple of days ago, I got a call

from the school telling me that my son was having a seizure and that the emergency squad had been called. I really had

hoped all this was past us, so I am feeling low right now. My son's seizure stopped on it's own before the nurse needed to

administer the Diastat that I had given the school for emergency and my son was able to walk to the car and be taken home

instead of taking the ambulance to the hospital. He went back to school today and I have been praying hard!!!

  I am glad to have found this site and this discussion!  I have a ten year old son who still has febrile seizures, so I know we are not alone! Like many other people have posted, this condition was supposed to "go away" by now, but hasn't and it is really frustrating!!! My husband and I have never had seizures, febrile or otherwise, but our daughter did have one (briefly) with a high fever as a toddler and never had them again. Hers may have been the result of a vaccine. Her vaccines were from totally different lots and batches since there is three years between our kids ages..  Our son was not so lucky, he had adverse reactions to his vaccinations--life threatening and had to be life-flighted, intubated, etc, He also suffered from head banging, jerking movements in his sleep, bleeding from bowels, sepsis, trouble swallowing and was considered to be on the autism spectrum.  So when doctors told us that it was a coincidence that the vaccines triggered a fever, which caused the seizures, which was "perfectly normal"--autism spectrum disorder as a result of the vaccines certainly is not normal!!!  Being that this "coincidence" happened twice after vaccinations--and one ER doc confirmed an adverse reaction, we quit vaccinating and sought help through a doctor specializing in treating vaccine-injured  children.  We treated our son with muscle testing, allergy elimination, supplements, dietary changes, and as he got older, I homeschooled him and his sister to keep her from bringing home extra illnesses which passed to him. Chelation was tried with transdermal DMSA and he had fewer and fewer febrile seizures. We once tried daily Depakote sprinkles in his applesauce, but he still had seizures and behaved inappropriately while on it.  He only gets Diastat-rectal valium for long lasting seizures that don't stop on their own. His longest stretch without a febrile seizure to date has been 18 months, but he has had many fevers and viral illnesses, which we slay by monitoring temp throughout the night and cycling Tylenol and Motrin.   Since he had been doing so well, I enrolled both kids back into regular school and just a couple of days ago, I got a call from the school telling me that my son was having a seizure and that the emergency squad had been called.  I really had hoped all this was past us, so I am feeling low right now. My son's seizure stopped on it's own before the nurse needed to administer the Diastat that I had given the school for emergency and my son was able to walk to the car and be taken home instead of taking the ambulance to the hospital.  He went back to school today and I have been praying hard!!!    