4 1/2 year old son with seizures of unknown cause

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tarabain

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My now 4 1/2 year old son started having seizures in March 2014. The first day he had 3 in one day. Two of them being in the ER where they then transferred us to Pediatric ICU Sutter Memorial in Sac to have further tests done. MRI, CT SCAN, SPINAL TAP, EEG, BLOOD AND URINE TEST all came back normal. They discharged us with 1.25ml Trileptol x2 a day. Since then we have had about 8 more seizures (He loses consciousness, falls down, foams at the mouth, small jerking movements). I have kept track of his diet, time and place of seizures and what he was doing at the time. Nothing seems to add up to being a trigger. The other day he had two more in one day and the doctor added Kepra to his medication x2. He is acting very spunky and different then his normal happy active self. We go for another EEG in August but I want to know what else I can do? Are there more tests that can help us find out why? Maybe an allergy or something genetic? Which medication would be right for him? Should we go outside of seeing out Neurologist that we are with now cause I feel like he just wants to medicate him and not do further tests to find out why?
 
Hi tarabain,

It must be very scary to witness your child going thru these seizures. It is good that your are keeping track of his diet and everything he's doing when the seizure(s) strike. Sometimes it takes more than one Dr. or more than one round of tests to figure out what is happening. And since this dr. seems to fit into the category of just adding more meds, try getting into seeing a pediatric epileptologist. Someone who specilaizes in epilepsy and would know which test/medication is right for a child.
The Keppra can make a patient anxious, and cause depression/rage, so definitely bring this to the neuro's attention. There are many more meds available.

And here is more info about diagnosing and looking at the brain:
http://www.epilepsy.com/learn/diagnosis/looking-brain
 
Your son can start having idiopathic seizures (unknown cause) a lot of people start having seizures for no reason.Has anyone else in your family ever had epilepsy?t was hereditary on one side of my family I had a cousin who had epilepsy her twin didn't but here father did.
There are all kinds of medications out there also.Just so he's not refractory like me and med resistant. like me.
 
Hi, tara and welcome to CWE
I agree with cint - to request a referral to a pediatric epileptologist. I would also recommend requesting a thorough medical exam (perhaps including genetic testing) to identify any syndrome-related cause for his seizures. Metabolic and mitochondrial conditions can cause seizures, for example. Unless your child has any other medical problem, chances are the epilepsy is unrelated to anything else but because your child is still young it is worth making sure there is not an underlying disorder.
 
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