July 2013

Throughout the month, the family continued to find fun summertime activities to do and carry on with the treatment plan for Erica's seizures to stop.  Fun activities included Tae Kwon Do (no sparring), bowling, sewing, legos, games, basketball, walks, movies, baseball and reading (which took a great amount of convincing).  Best parts of July involved time with friends and family.  Sue's mom, Sally (Mimi), and nephew, David, came to visit from CT for a handful of days mid July.  It was exactly what we all needed and sure was a highlight of our summer.  We kept busy during the week giving David a glimpse of what Colorado life was like.  Lots of laughter and smiles among us all.  We enjoyed a Rockies game, a trip up to Rocky Mountain Park, Fort Fun, Laser Tag, tour of Ponnequin Wind Farm, and much more.

    

 

Erica's anti-seizure medicine was increased each week and we noticed a decrease in seizure frequency and intensity.  However, Dr. Park was still not pleased that Erica was experiencing any seizures at all.  One July 11, Erica experienced the warning sign, or as she calls it, "bad feeling", while at Sam's baseball game.  These bad feelings have been described by her doctor as being a seizure aura.  These are in fact small seizures that occur, but Erica does not lose awareness/consciousness during them.  At times these auras do develop to worse seizures, other times they pass.  So, while at Sam's baseball game, she experienced aura after aura.  She was so uncomfortable with the lingering aura and nothing seem to make them pass.  Sue decided after 20 minutes of seeing Erica in such discomfort, whimpering at times, to go to the ER.  Knowing that auras have been classified as small seizures and sustained seizures could be harmful to Erica, it was important to stop them from happening immediately.  While in the ER, the seizures subsided and Erica was given an emergency anti-seizure medicine to prevent further seizures for some time. This would allow her brain to rest.  Indeed it did.  Erica was SO groggy and sleepy throughout the next day.  Lots of resting and napping followed. Following this scarey incident, Dr. Park wrote a prescription for Erica to have a rescue medicine with us at all times in the event that intense seizures last for more than 5 minutes or if she has clustering of seizure auras. 

On July 19th, Erica had her first MRI.  Dr. Park called that evening with the results.  The MRI in fact did find the cause for her epilepsy.  Erica has a low-grade tumor called a ganglioglioma which is located in the temporal lobe.  Dr. Park explained that this type of tumor is NOT a cancerous kind and Erica will not need radiation or chemo.  These types of tumors are very slow growing, if they grow at all.  The course of action was to treat the symptoms and get the seizures to stop. A follow-up MRI will occur in one month to observe if there is any change.

The ganglioglioma is located on the right above the eye socket.

 

As can be imagined, our world was turned upside down.  Lots of phone calls with family and friends helped to process this information.  We also spoke frequently with Dr. Park regarding questions and wonderings.  This news was delivered during our visit with Sally and David, which actually couldn't have been better.  Sue had her mother with her for support and the kids had their cousin to keep them smiling and laughing.

Erica's condition has been difficult for her to adjust to because it has really put a damper on the "fun factor" of her life.  The results of the MRI also added disappointment and changes to our summer plans. Typically every summer, Sue and kids travel to CT to visit with family and friends.  Our original plans were to travel after Sally and David's visit.  We were very excited for the trip, especially to meet and see cousins from Nicaragua that were visiting CT also.  We were sad to cancel our trip and we have missed our family dearly.  

July closed with continued improvement in Erica's seizure frequency and intensity.  She actually went 9 days without having a seizure where she loses consciousness.  She did continue to have auras, which Dr. Park wasn't totally satisfied with.  Still the question remained with all of us...why are we not removing the tumor?