Emma

Meet Emma.  She is 4 years old, she has Epilepsy and this is her story.

At 3 years old, Emma's mom knew that something was wrong.  For years Emma would stare off and seemed to lose balance a lot more than any other toddler.  Her family was in the process of moving to another state so her mom made an appointment with her pediatrician.  She was told it could be low blood sugar and sent her for tests.  Those all came back normal so she was told that it was typical toddler clumsiness.  Her mom did not feel comfortable with that diagnoses so as soon as they were moved into their new home, she took her to a new doctor.  The doctor briefly talked to her mom about Epilepsy and absence seizures and then sent them home without a diagnosis.  Things seemed to escalate very quickly, Emma's eyes were starting to roll back into her head during these staring spells and they seemed to last for longer than normal.  Scared of what this might mean, her mother took her to the emergency room.  The doctors there were concerned as well and got her an appointment with a neurologist for the very next day.  During that visit, an EEG was performed.  Emma was asleep during the EEG and her mom lay beside her.  Her mother noticed her twitching while she slept and each time that happened she looked at the nurse performing the test and by the look on her face, she knew, Emma was having seizures.  The doctor later confirmed what her mom already knew.  Emma was started on a medication and was told to come back in 3 months. 

The medication Emma was put on suddenly changed her sweet, loving personality and her seizures seemed to get worse.  With a call to her neurologist, a new medication was added.  This new medication only escalated things and Emma became volatile towards her sister and would even get sick from time to time.  After giving her a second dose, a rash was noticed.  After a call to her new doctor, Emma's mom was told that it was probably just the flu.  Her mother ended up switching to a new neurologist who performed an MRI on Emma.  The MRI showed that Emma had a Mesial Temporal Schlerosis on the left hippocampus of her brain.  Her mother was told that in 6 months, if it had grown, Emma would need to have surgery to remove it. 

Emma was put on a new medication to try to control her seizures.  It seemed to work at first but after a couple of weeks, it seemed to stop.  The dose was increased and she seemed fine until it stopped working after another 2 weeks.  At this point Emma had a hard time remembering anything.  She seemed to have complete memory loss some times and would often forget where she was.  There were even times when she didn't know who her mom was.  Emma's mom talked to her neurologist who told her that it is normal with her seizures and not to worry.  At that point, Emma's mom took matters into her own hands.  After reading the side effects of the meds and seeing that all of Emma's symptoms seemed to be the side effects, she called her pediatrician and went in to discuss neurologists.  She also contacted the Epilepsy Foundation in her area who helped her find a new neurologist. 

The new neurologist performed another EEG and discussed medications and possible other treatment for Emma if those don't work for her.  She was slowly weaned off of her other medication and put onto a new one.  the changes in Emma were almost immediate.  She went from having 50 seizures a day and right before Christmas, she was not having any.  Her mother was very happy but yet she still knew something was not right with Emma.  After seeing her neurologist, she was sent to a different doctor who diagnosed her with Atypical Autism and Hypotonia.  She also started physical therapy because of her feet and would soon be walking, jumping and running just like all of the other kids. 

Emma had switched medications once again, had another EEG and another MRI.  This time, the MRI was clean.  Her mom broke into tears.  How could it be clean?  She was told that there was a growth and even discussed surgery.  The new doctor explained that some children's brains do not finish growing until they are 5 and MRI's can often be read wrong.  This was fantastic news for Emma and her family!!!

This past August, Emma started school and is doing outstanding.  She is at the same grade level as the rest of the kids.  She has been seizure free for the past 2 months.  Since she is so young, her mom doesn't notice kids treating her any different and she prays every day that it doesn't change.  The past year has been very difficult on Emma's mom yet she feels this whole experience has made her grow and changed her into a better person.  What her mother fears most is SUDEP (sudden unexplained death in Epilepsy) and would sometimes only get 2 hours of sleep a night being at Emma's bedside.  Luckily Emma doesn't understand fully what is going on.  She knows she has seizures and that she has to take medicine to help control them but that is about it.  One day she will understand Epilepsy more and will not want people to define her strictly by that.

Thank you so much Emma's mom for sharing Emma's story with all of us!!!  If anyone has any questions about Epilepsy or SUDEP, you can learn more at http://www.dannydid.org/ or through your local Epilepsy Foundation. 

 Let's let kids like Emma know that they are beautiful and loved, every kid deserves to feel special!!!