Epilepsy or more?

Re: Epilepsy or more?

• AB&TB

  November 2010

  That is interesting.  Our MRI was scheduled as soon as the EEG confirmed the seizure activity.  I would think that it could be an important tool in diagnosing a condition beyond epilepsy.  If it comes back normal, that is great, but I would think that your doc would want that confirmation.  I would insist on the MRI if I were you.

  9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks

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• Paigeo member

  November 2010

  My DD has epilepsy.  She started having seizures at 2 wks but didn't start medication till 5 months.  It took awhile to get her on the right dosage of medication but once we did it has seemed to control her seizures which is great.  She has had several  EEG's, CT scan, MRI, blood work, etc.  Every test has always come back completely normal.  I think like 50% of seizures don't show a definitive cause.  My neuro always seems most interested in the EEG results.  The CT we had done in the emergency room when they couldn't get her seizures to stop.  Her neuro ordered an outpatent MRI a few months later and I got the impression he did the MRI just to be thorough (she was almost 7 months at the time).  If I were you I would definitely request one.  They have to be sedated which is hard but I do feel better knowing we have covered all the bases.

  
  
  

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• trophywife

  November 2010

  My DD has E as well. Her Dx is GEFS+ (Generalized Epilepsy w/ Febrile Seizures+).  We are now seeing a Neuro out of Childrens Hospital in Detroit.  He is the 3rd neuro we have seen, the other two just kept raising the doses of med she was on (Trileptal, Keppra) yet she was still having a seizure  once a week. MRI, CT, & EEG's were all normal. PET scan showed several areas of E activity. We then added a 3rd med Clobazam.  Her current Neuro & her Pedi were the only ones who seemed to listen to our concerns about her meds, and finally after speaking with her neuro he we have weaned her off the trileptal & have had no seizures for 6 weeks! I Love her neuro & his entire staff. If we hadn't gone to see him I have no idea where we would be right now.

  I guess my point is that while it can take sometime to figure out the proper meds & dosage, if you feel that enough is not being done, or you feel like the Dr isn't addressing your concerns get another opinion. Don't stop, push for the tests that you think maybe helpful to you  LO. Find a Dr that will listen and answer your questions, rather than dismiss them.

  Best of luck to you & your LO

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• trophywife

  November 2010

  Also the CT shows structure & formation of the brain, while EEG shows electrical activity, so I too would second guess the Dr telling me that. A MRI will show a very detailed picture of the brain anatomy, and a PET scan shows how the brain utilizes glucose as fuel. 

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• Katrina_0087

  November 2010

  Thanks girls for your replies. I have a couple calls into other pediatricians to try to get a second opinion and we will also be requesting to see a neurologist at our next appt with the current one.

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• kadiekat

  November 2010

  I don't have a child with epilepsy, but I am a pediatric nurse on a neuro floor.  The patients who present to us with a first time seizure (although these are often generalized tonic clonic, or grand mal, seizures), our typical plan involves getting an MRI and about an hour of EEG, preferably asleep and awake if possible.  

  I have seen it frequently where a child has seizure activity, but it the 1 hour EEG is normal or may have only a few abnormal spikes.  At my hospital, they will also do long-term monitoring to evaluate seizure v. non-seizure, monitor med effectiveness, and as a pre-surgical work-up. LTM involves an EEG over 24 hours to a couple weeks along with video monitoring.  When a suspected seizure occurs, the family pushes a button to mark the tape and the EEG.  This would be especially helpful because you have several events that might be seizures, but also might not.  Sometimes patients do have seizures, but they also have events that seem abnormal, but are not seizures.  Sometimes this is also able to be done slightly differently at home, in a set up that resembles a holter monitor, but with EEG leads.

  MRIs can reveal any organic causes of problems, but there is not always one present even when a child has seizures.  Sometimes seizures can be caused by a mass or tumor.  Sometimes there is a congenital area of brain tissue that fails to develop properly, and it could be a seizure focus.  Most often, though, this is not the case.  In cases where there is an area that can be isolated w/ abnormal brain tissue/development, it can help guide medication management sometimes.  We even go so far as to do brain surgery to resect the tissue that is diseased.  Amazingly, children who have this surgery do well.   A PET scan can also be helpful, as this evaluates how the brain uses glucose--basically, areas that are hard at work consume more sugar to fuel it.  The PET scan can also reveal if there is some brain functional abnormality.

  It can take a few medications sometimes to find one that works.  One thing to ask about is whether some of the things you listed might be sensory or behavioral--repeated words, apparent aversion to certain sensations--these may indicate sometime behavioral or developmental. 

  I'm bringing all of this up not to freak you out but to let you know that there are many options out there to evaluate her seizures.  I strongly suggest that you get a second opinion.  Good seizure control helps ensure good development, and it is possible with good care!  There are differences in skill among different neurologists, too.  There are a few especially gifted neurologists at my hospital that are able to pick up subtle nuances in the EEG that lead them to manage even the most complicated patients well!  Good luck to you. 

  K + F (Married 9/13/2008) Rainbow baby due 10/2/11

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