Thursday morning Cully will go into Detroit Children's Hospital for his long awaited EEG with Dr Chugani. This EEG will let us know just what is going on behind his chubby cheeks (his brain)...
We have been several weeks without the ACTH injections and are at SEVEN WEEKS seizure free. Well we are not seeing any seizures. The EEG gives a good record of all of Cully's brain activity and is used to look for any patterns of seizure activity. To be specific in regards to Cully and his IS the team will be looking for any "Hypsarrhythmia" patterns...
*explanation
Hypsarrhythmia is an abnormal interictal pattern consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on an EEG. Related to Infantile Spasms""
This EEG will tell us if Cully is currently IS seizure free. We are still too early to be in the clear but a clean EEG right now will sure be a huge positive step in Cully winning his fight with IS. We will also learn if we can begin to reduce the other high risk seizure medications Cully is on. If so, let the nail biting begin again as we hope that the med changes will not bring back any seizures as some of the changes may not be undone.
In our eyes we feel that with all we are seeing with Cully's improved development, his alertness and response to his environment, and just his dang ole cuteness and humor is proof that all that mixed up brain activity that was steeling him from us has gone away.
We will let everyone know on Thursday.......
He still has those chubby cheeks but he does look sooo much better! Glad to hear he's still seizure free! Praying for a clean EEG and a happy, healthy New Year!
ReplyDelete