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!!

oh my...weeks past and ahead

I have been remiss in my blogging absenteeism.  I wish I had a better excuse like, I was on an exotic island with no wifi, but I don't.  I was more than a little overwhelmed with some stuff going on and just could not write about it yet.  And because I could not write about the main thing going on, I could not write about anything.

As I have blogged about many times before, Lilly has had febrile seizures from the time she was 15 months old.  For those who don't know what that means, febrile seizures are generally harmless and caused by the fever, either how fast it is rising or falling.  They are not neurologically involved.  Children outgrow them by 5-6 years old.

Most children have 1 or 2.  Lilly has had over 12.  I have lost count.  They have all been at very low temperatures, like 100.5 or 101.  Barely a fever, really.  The frequency had slowed down, so we were hopeful that she was outgrowing them already.  The last one was Memorial Day weekend after she had a vaccine booster that Friday.  For Lilly vaccine = fever = seizure.  I should have known that she needed constant ibuprofen.  Advil is our friend.

And then she had a different kind of seizure.  Last month, before Halloween actually, she was with my mom at a friend's house when she had a 10+ minute seizure.  With no fever.  :(  The ER doctor told me that he had never heard of a child having so many febrile seizures without being medicated.  He also made it clear that this was NOT a febrile seizure.  Time to go for another neurologist visit.

I decided to switch neuros at this time.  I won't get into all the details because, while they are important to me, it is a long and involved story.  Suffice it to say I did not feel fully comfortable with the last one.  I did not realize how uncomfortable I was until I met the new one.  I LOVE HIM!!  Lilly loved him.  That or she loved the toys in his office and the lollipop he gave her after his exam.

He recommended that she have the 48-hour video EEG (which is done in a hospital) as soon as possible.  The main concern, are her seizures caused by the fever OR are the fevers caused by the seizure, he brought up to me before I said anything and is the EXACT question I asked the last neurologist more than once.  That alone felt like he was the right doctor for us.  Lilly had the 20 minute EEG (sedated) almost 2 years ago.  The insurance company wants that one repeated before they will pay for the 48 hour.  The doctor called them and argued his case.  I am awaiting the decision.

We were supposed to go into the hospital last week but due to the insurance SNAFU we were rescheduled for this week.  I am hoping that we are in.  I just want the answers.  Knowing is hard.  Not knowing is harder.  Last week I was a ball of nerves and could barely be nice to anyone.  When the testing was cancelled at the very last minute the evening before I realized I just had to let it go.  I had worried about it all weekend, through Thanksgiving.  Well that got me nowhere fast.  I could not worry like I had for another whole week.

I received a confirmation call from the hospital this evening confirming Lilly's appointment.  I am hoping that is a positive sign.  I know that Lilly will do great.  Me, I am probably questionable!  lol

Please keep us in your prayers and thoughts in the next few days. xoxo