Tuesday, February 15, 2011

New Plan

Today Callie had a checkup with her neurologist Dr. Pearl.  He liked how alert and attentive she looked and was very pleased her seizures have not returned.  In fact, he said now that she is 15 months old, it would be very uncommon for the infantile spasms to return again (although it was also uncommon for them to return a second time last year).  At this point, she would probably have partial seizures instead of infantile spasms if she does experience another spell.  I need to do some research so that I know how detect this new type of seizure.  I believe it can be anything from a twitch to staring into space.  He said I will know it if I see it and I hope so.  

I let Dr. Pearl know about Callie's recent failure to thrive diagnosis and asked if her eating and weight gain issues could be partially due to the Topamax she is taking and he said yes.  He went on to say he feels that we should wean her from Topamax since she has hopefully outgrown the IS.  He said it is a very tough drug which is good for IS, but not worth having her on now that she is hopefully over the IS.  Once she is off the drug, hopefully we will see her with an appetite and more of an interest in food.  He gave me instructions to start weaning her starting tomorrow.  In six weeks she will have her last dose.  The kicker is he does not want to put her on anything else right now.  He said he would like to try having her go without meds at this point.  I have already shared my thoughts on meds, so of course I would prefer that she not take them, but it scares me to think of not having her on a seizure medication.  I am not completely comfortable with this, but he seemed certain of this and I do trust this doctor, so I am going to go with it unless the research I am going to be doing the next few days makes me think differently.  To help ease our minds and give us more information, Dr. Pearl would like Callie to have a 24 hour EEG in 6 weeks once she is off the Topamax.  This will involve staying overnight at Children's National Medical Center.  Callie will be hooked up to the EEG for 24 hours to record her brain activity during both awake and sleep cycles.  The test will pick up any seizure activity.  If anything is detected she will be started on the appropriate drug, like Trileptal or Keppra.  I will add these drugs to my research list.  He said they are safer and can be used longer term.  

Here is Callie during her last EEG.  It is hard to imagine having her hooked up for 24 hours and I dread the hospital stay downtown, but it will be good to know what is going on in her pretty little head.

I am a little nervous right now, but it is good to have a plan.  And the thought of her possibly going without harsh seizure meds, at least for a little while, is exciting.  Thank you so much in advance for all the prayers to keep Callie seizure free!


Lori Miraldi on February 23, 2011 at 12:55 PM said...

Always such a happy girl, even with all those wires.


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