Next step?

[sarge246]

9 yr. daughter, diagnosed processing issues-vision, auditory, sensory & fine motor.  Received therapy for all, little success.  Seen 2 yrs to determine if tingling in legs due to allergy.  None found.  In questioning her on teacher-reported problems with attention, she matter-of-factly mentioned that it is not trouble hearing, concentrating, etc., it is because she is "disappearing" for a while!  When questioned it became clear this has happened for years, but she never told because she thought everyone had these.  Has a "oomph" feeling in stomach prior to most and tingling in feet, legs and at times hands and stomach.  She remembers nothing, but when she returns she has missed things.  Says lights (street lights, police lights) also make her "go away".  Has no behavior problems but struggles in school.  Grandmother with epilepsy --no further history known.Problem, stress EEG this morning was normal.  After EEG, they decided to start her on Focalin to see if it is ADD.  If she still has episodes, then drop the Focalin and to start on a seizure med instead.  Concerned about medicating a child on such little info.  Will go ahead and try ADD med, but was told if seizure meds need to be tried, she must remain on them two years!  Not sure why…  Worried about doing that.  Know diagnosis cannot be given with this info, but is it common to just medicate and hope for the best?  I know EEG can be inconclusive, but aren't there longer versions of the EEG or an MRI that could help?  Am just leery of medicating without knowing what is wrong and why.
What do I do now?  If it is standard to medicate a child with limited data, then I will proceed, but if this is atypical, I will get another opinion.  It would be easy to just pretend it IS ok and just go on with life.  She is no problem at all, manages what is wrong and will survive---but, she is having these "disappearing spells" 1-5 times a day that she knows of, and that can't be good.  I really can't ignore this!

[sarge246]

Dear Doctor Pho,

       Thank you for your assistance.  I agree...a second opion would be wise.  At least it will give some validation, even if additional information is not found.  I appreciate your time and care in responding to this!

                                                                       Sincerely----MS

[Kevin Pho, MD]

This certainly sounds like a difficult case, and the decision to medicate without a clear diagnosis suggests that many of the more conventional approaches have resulted in a dead end.  

Before starting on a 2-year course of anti-seizure medications, without a clear diagnosis of seizures, I would obtain another neurology opinion at a major academic medical center.  

If they concur with the treatment approach, I would proceed.  

This option can be discussed with your personal physician.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
www.kevinmd.com