Saturday, April 9, 2011

At the Crossroad

Spring has arrived, and for what seems like the first time since this began, we have some good news to share!  Will's EEG (a test which measures brain wave activity) on Thursday showed "significant improvement." It still doesn't look normal, but it looks much better than what it looked like prior to beginning ACTH.  None of the doctors expected to see this, and Will's neurologist told us that at this moment, she was excited.  Since his dose of ACTH was decreased last week, we are also starting to see his smile again, which is a wonderful thing.

Will is still having what we believe is a modified type of seizure, but since the EEG on Thursday was only for 75 minutes, they weren't able to detect any of these episodes during the test.  So, Will is going to be readmitted to the hospital on Monday for what will likely be two nights, where he will be connected to the 24/7 video EEG so that they can continue to monitor him and hopefully provide us with more answers as to what is going on.  As much as we hate being inpatient at the hospital, we are actually glad that they are going to be gathering more data.  Plus, we have been there almost every day this week anyway, may as well have a room to call our own.

We are nervous to even type this for fear it won't stick, but Will has not had a "head drop" flexor spasm in 6 days.  He is still not "seizure free", but we will take any blessings we can get.  We are basically standing at a crossroad right now.  There is a chance that the seizure activity and abnormalities in his brain waves we are still seeing right now will continue to improve from the ACTH.  However, this is also a chance it won't especially because we had to reduce the dose because of his blood pressure.

We have been joking that Will is on the prayer list at every church in the area, which we love because it is awesome to know that so many people of all religions are praying for our son.  If you believe in the power of prayer, keep them coming!  Since ACTH is a drug that a child cannot remain on indefinitely, we need prayers that the spasms will not come back when we wean the drug.  We need prayers that Will's blood pressure, which continues to run very high, won't spike again so he can finish this course of medication.  We need prayers that his EEG brain wave pattern will continue to show improvement to more closely resemble a normal EEG.  We need prayers that the modified seizures we are seeing right now will go away.  Finally, we need prayers that we have the patience to survive 3 more days inpatient with Will hooked up to the wall again...would it be out of line to ask if they allow alcoholic beverages in the epilepsy monitoring unit?


  1. We're so thankful for the good news, and will continue to pray specifically for all of you as you navigate the coming days and weeks. I'm so glad you're seeing his smile again! "'Roid rage" is real, and the agitation kids can feel must be so difficult for them to handle, as well as sad for parents to watch.

    It might be worth asking for mild sedatives for the whole family while you're inpatient next week! I can't imagine containing an active toddler for 2+ days in a small room! ;)


  2. Great news, we'll keep praying. And I think they could at least give you a Xanax or two : )

  3. So happy to read something positive about Will!