Finally, the follow-up

Thank you all for your prayers and positive thoughts as we awaited the results of all of Lilly's tests.  It has been a challenge to even get an appointment with the doctor.  As it is, I had to reschedule a court date, so I will need to take a day from work anyway.  grr....but I digress.

Without further ado, the tests only showed one "unusual activity" period of 2 seconds in the whole 48 hours.  This could be nothing or it could be the beginning of a seizure disorder.  If she is going to have another seizure without a fever it will in all probability be in the next 6 months.  So we wait and see.  We have a new prescription for diazepam to be administered if she has a seizure longer than 5 minutes.  She will have it with her at all times.

I think that this was probably the best of all answers.  There were not many episodes that would indicate that she has epilepsy.  I definitely feel that it was worth my time and effort and her discomfort in having the testing done.  I trust the doctor implicitly, which I cannot say about the last neurologist.  I know from talking to him and to the other mom I met that he is aggressive in both testing and treatment.  So if he does not think that Lilly needs medication right now, I am confident in that decision.

Thank you again for all your kind thoughts and notes.  It has been a challenging time for my family as my Nanny is in her final stages of her life.  I am praying for a peaceful passage for her into the next life.

48 hour video EEG testing

We are in the pediatric neurology center!  I am so grateful to our doctor who advocated to the insurance company for Lilly.  We saw him this morning and he is very glad that Lilly is here so we can get some answers.  Lilly has been amazing so far, especially through the node application, which takes the better part of an hour.  See, she was even smiley right after!   

One of the hardest parts is that we found out about 7pm that Lilly has to stay up until after midnight.  They want her to have half the sleep she normally has.  The poor kid has been asking me to go to sleep.  Several times she has also said that she was ready to go home.  But overall she is in great spirits.  She has taken the cue from Vinnie and I about how much fin this adventure will be.  We are having treats and watching movies, coloring and playing with play-doh.  And this too will pass.  At least she was able to take a nap this afternoon!

Thank you for all the positive thoughts and prayers sent our way!!