Thanksgiving Drama

For some reason this never posted a few weeks back ...We had a nice day on Thanksgiving with the Evans family in Greensboro.  Roxie loved the special sweet potato casserole that her Nana made for her and she also tried lots of the other yummy dishes.  She seemed happy and healthy on Thursday.  However that night Roxie woke up around 2:30am and her Dad went in to try to get her back to sleep.  He slept next to her for a few hours and then came running in to get me at 5:40 with Roxie in his arms.  She was just beginning to have a seizure.  We gave her the Diastat shot immediately (Valium)  and the seizure stopped progressing. However she continued to have rhythmic eye movement for the next hour, which we think was continued seizure activity.  Then at 6:40 the seizure began to progress again.  We gave her a second shot of Diastat and left for the ER.  The second dose completely knocked her out and stopped any visible seizure activity.  Although we were initially underwhelmed by the old and drab appearance of the ER facility at Cone Hospital in Greensboro, the staff there was great and took good care of us while we were there.  We do now feel blessed to have such nice pediatric ER facilities in Charlotte.  Roxie continued to be stable in the ER and we were discharged by 10:15.  The blood and urine samples taken in the ER to check for signs of infection were normal as was the chest X-ray, so we still had no idea what had caused the seizures.  Roxie was discharged and we went home hoping she'd just sleep off the Diastat and be fine.  But then just a few hours later Roxie started vomitting.  She was sick on and off for the rest of the day and through the night and was extremely weak.  And on Saturday morning she woke up and wanted to eat and then fell back to sleep for the rest of the morning.  We decided to try to go back to Charlotte at that point since Roxie kept food down for 3 hours.  We'd feel more comfortable in case of another emergency in Charlotte.   She had a hard time on the trip home and was still grouchy for the first 3 hours we were back.  But at 3:00 she suddenly seemed to have some energy  and her mood improved.  She continued to get better for the rest of the day.  Then on Sunday morning Roxie was back to her normal self.  We think that she may have had a stomach bug (again). We were sad and frustrated that we were not to be able to see the Sprinkle and Thomas side of the family as we had planned because of the illness.  But we had to consider that the Sprinkle's farm is at least 30 minutes from an ER.  Phelps and I try not to be tied down because of Roxie's medical challenges, but we don't want to take chances when we know she is sick.  

On Tuesday we met with Roxie's Neurologist, Dr. Nelson,  to discuss where to go from here since she's now had 5 seizures in less than 3 months.  The good news is that the eye movement that Roxie continued to have for an hour last Friday even after the first dose of Diastat is a minor seizure and does not cause brain damage.  Also, she explained that epileptic patients who may have never had a status seizure as a small baby or child, may later have seizures that progress into status.  This is because as the white matter in the brain grows because it allows more and deeper connections of the activity.  I guess that made us feel a little better.  She gave us a new arsenal of medications to try to use when Roxie does have another seizure including a tablet that dissolves in the mouth and a medicine that we can squirt up the nose.  And we have a schedule to increase the anti-seizure medications whenever Roxie does have another seizure.  Dr. Nelson did mention that there was a small possibility that Roxie could be having so much more seizure activity because of a stroke.  We have seen no regression, but she said it is possible the stroke is in an area that doesn't affect development.  Dr. Nelson indicated this is a remote possibility, but Roxie is at risk for stroke because of her Mitochondrial Disease.  So we are scheduling an MRI in the next few months just to take a peak at her brain.  We hope and expect everything to be OK, but it was a reminder that in the future complications and regression are always a possibility for Roxie.  

But to end on a happy note, Roxie has been taking steps with her PT and with her teachers at school for the past month.  Her muscles continue to strengthen!  Yeah Roxie!