EEG Results ~ Feeling disheartened...

Thursday night Reagan was very excited to prepare for her sleep deprived EEG on Friday.  She remembered from the previous year being able to stay up late and watch movies.  So Johnny took the late shift and kept her up until 1am and I set my alarm and got her up at 5am.  We took Cole with us this year for the first time and it was his job to keep her awake for the 45 minute drive to the hospital. Although she almost fell asleep twice, Cole had a little too much fun hitting her and screaming to keep her awake.  He had a lot of questions about what an EEG is and how it works.  He was also very concerned about his sister and watched over her carefully.

Reagan did very well during the test.  It doesn't go without appreciation that when she was younger this wasn't as easy. The tech was very nice and did a great job explaining what she should expect each step of the way.  After about 15 minutes of getting setup and responding to some questions and breathing the tech turned out the lights and started a series of strobe lights.  They started slow and further between and increased with speed and frequency.  She was measuring brain activity both during wake and once Reagan fell asleep.  We were so proud of Cole being able to sit quietly for 40 minutes during the test.  This was important not only because she had a video monitor, but also because she needed to stay asleep. A year ago I'm not sure he would have been able to sit still that long.

We had our follow up today with the neurologist, Dr. Lavenstein.  We've been thinking about this appointment since our last EEG in April of 2016 and hanging our hat on something Dr. Pearl told us when Reagan was only 1 year old.  He said the around the age of 8 the brain could settle down as the majority of the mapping has developed.  Amazing how we've always kept age 8 in the back of our mind as a first goal (she turns 8 next month).  As you may remember, Dr. Lavenstein also suggested we repeat the EEG this year to determine if Reagan may be able to come off her medication.  Although he was very happy to hear she is still responding well to the Trileptol, he said that the EEG shows no improvement since last year and that she continues to have frequent focal discharges in the right frontal lobe in the area where her surgery was.  This indicates that without medication, her probability of having seizures from activity responding to the area of scar tissue is probably 50-60%.  We were hopeful going into this appointment that being seizure free for 5 years would be a huge factor in trying to go off her medication.  Unfortunately, Dr. Lavenstein said he just doesn't think it's a good idea.  I'm sure he could see the disappointment in our faces as we digested this information.  His compassion was apparent as he reminded us that we should be so thankful that the medication has allowed her to live seizure free for 5 years.  I mentioned our concern about learning challenges from the affects of the medication and he said research supports that seizure medications can do that.  But he also said that having seizures has so many negative affects on the brain's ability to learn and retain information that the risk would be counterproductive.  Reagan asked if she could start taking her medication as a pill.  Although she hasn't taken pills before, she said she is ready to try.  And selfishly it would be MUCH easier to keep pills in our bag if we are away from home not to mention they don't have to be climate controlled like her liquid medication.  AND we won't have to keep hundreds of syringes in the bottom drawer in the kitchen!

And so we left feeling as though the hope was lost.  We were told to come back in 6 months for another checkup and that maybe one day we would see improvement in her brain activity that may allow her to come off medication. But not today.  I have thought a lot about why we want this so badly.  I have come to the conclusion that especially now without therapy, and her doing so well in her activities, that the medication is one of the only things that prevents us from feeling like we could put this in the past.  Twice a day we are reminded that one day she may have a seizure again.  We are so happy with how well she is doing, but I guess there are days I just want to stress about normal mom stuff.  Like picking summer camps and Easter outfits.  But alas, this is not our destiny and so we carry on.  I tuck my children in bed each night, like all moms, kissing them good night, telling them how much I love them, how proud I am of them, and hoping they know how amazing I think they are for taking life head on and never giving up on things that are so very hard.