Monday, June 30, 2014

EEG Results are In......Sort Of.

Bexley had her EEG on Friday morning. The one positive is that the EEG process itself went much smoother on Friday than it did in the hospital. In the hospital, they had to glue approximately 30 electrodes to her head, which she hated and screamed through the entire process of putting them on and taking them off. When I woke up Friday, I was dreading having to watch her go through that process again. Thankfully, this time they were able to use a gel and I could hold her the entire time (I think she is starting to realize being laid down on a doctor's office table/bed means something uncomfortable is about to happen). She was pretty relaxed through the entire process and ended up falling asleep. I was so relieved because she has been through so much that I was dreading having to watch her be "tortured" again. If more EEGs are in her future, hopefully, the rest of them will go as smoothly.

We finally got the results back from her EEG at the end of the day today.  These results seemed to have left us with more questions than answers. However, we are really just trying to focus on the positive news. The great news is that her EEG is currently showing that her Hypsarrhythmia is considered resolved at this point, which means that she is responding to the ACTH injections. We hope this will continue as we wean her off the medication. 

The nurse also reported focal abnormalities were noted in her EEG. When asked what that means, she said it tends to suggest epileptic potential.  We know that kids that suffer from Infantile Spasms are at increased risk to develop different Epileptic Disorders. At this point, we are unsure if the abnormalities noted are typically seen in all kids who have recently had Infantile Spasms or if those abnormalities mean that Bexley has an underlying Epileptic Disorder.  We are going to try to call the doctor's office tomorrow to see if they can shed a little more light on these EEG results, but we have a feeling that we will be told that we will just have to wait for our neurology follow-up appointment in August. 

As far as little Miss Bexley goes, the side effects to the medicines are still there, but seem to be lessening a little bit. We have started to notice her personality coming back more and more over the last week. She is giggling and smiling more as well as "talking" up a storm. I hope and pray everyday that she keeps those smiles coming because they brighten up everyday for us and continue to help us have the patience to wait for answers as well as the strength to face whatever challenges that may be in our future.  

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