Tuesday, March 6, 2012

Good News for Jamie


Jamie had her six month follow up with the neurologist and good news!  Since she's responding so well to a low dose of Keppra and has had no seizures, she's a candidate to be tapered off the med.  I'm reluctant on the decision as seeing a seizure scares the living daylights out of me but as the doctor stated, 'it has to happen at some point.'  So all in all, very good news that her Benign Rolandic Epilepsy is following the proper suit and going away with puberty.  The better part is that it's going away sooner than puberty so I couldn't be happier.  I also know that Jamie is more than pleased with the idea of not having to take that 'icky' tasting medicine.

The doctor gave us the choice to start tapering her off it now or we could wait until after school which is what I opted for to have more time.  My four year old also had her routine doctor visit with her specialist and her med was reduced.  I couldn't fathom the idea of weaning two children off their potentially life saving meds so I opted to go one at a time.  All I can say in spite of the last four years of numerous hospitalizations, doctor visits, emergency room visits and scares, if both end up healthy again, I won't complain.  There are many children worse off with different forms of epilepsy and harsher forms of asthma/allergies.  I watched my youngest almost die when she was a little older than one so I know the fear parents have to face.  

Even if both girls become healthy, we will continue our non-profit trying to bring some cheer to children in the hospital.  This was our main goal for starting our page and we will continue this goal for as long as possible.

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