For any who don’t know, recently our daughter Abigail was admitted to the local Children’s Hospital for suspected seizure activity that was causing her to have an abnormal EEG and have episodes where she tossed her head forward. You can read more about the background of that journey here.
It is now June 18th, and after being in the hospital since the 15th, we were waiting (im)patiently for answers and a start to treatment that would help her.
Over the course of her stay, Abigail was hooked up to an EEG and data was constantly being collected and read to help determine exactly what kind of seizures she is having. Yesterday afternoon, after having several episodes that were recorded on the EEG, she was officially freed from the electrodes and wires just in time to be sent for an MRI. We were told that we should have more information in the morning after both of those scans were read and a diagnosis determined.
Cue 10:30am this morning… Bobby and I were waiting and continuously drifting our eyes to the door where we knew any moment the doctors should walk through and tell us the news we may not want to hear. I am not good at sitting in anticipation- so I spent the whole time trying to ignore the nervous feeling and convincing myself that whatever they told me would not be the end of the world.
FINALLY, the doctors entered the room and Bobby and I sat next to each other and braced ourselves. They told us:
-Abigail’s MRI came back all clear!! This means there are no structural abnormalities causing her episodes. Because it came back completely normal we had blood drawn to explore the possibilities of gene mutations causing her episodes and the erratic brain activity. We will not know these results for a few weeks.
-Abigail is officially diagnosed with infantile spasms- the original diagnosis we were told was likely not going to be the condition that she has because the EEG did not show the distinctive infantile spasms patterns. HOWEVER, it appears she has infantile spasms but NOT the accompanying West Syndrome (hypsarrhythmia) that is typically seen in infantile spasms patients: this is positive news andwe are told this hopefully increases her chances of fully treating and eliminating the seizures and abnormal activity so that she won’t have it come back.
-In the meantime, we are starting her on a month-long steroid treatment to try and halt the unusual activity, stop the seizures, and allow her brain to develop more normally. Successful treatment will be determined by a total elimination of seizure episodes and a clear EEG. Unfortunately, as with most steroids, there are potential side effects that will require monitoring and frequent check-ins with the pediatrician. This is by no means over yet, but the report was good and her chances of being seizure free are good!
All of your thoughts and prayers were felt as we waited on results. Please continue to pray for successful treatment and that we can avoid too many complications from the steroids! We love and appreciate each of you!
Have a great day!
