Tuesday, April 5, 2011

The Sweetest Smiles

Things have been a little tough around here, and yet, we know that things could also be so much worse.  We are now 14 days into Will's ACTH treatment, which means we are beyond the time frame for when we should be seeing results. So far, the ACTH doesn't seem to be working although it is actually difficult for us to tell.  We are seeing a reduction in the "head-drops" associated with his spasms, but he is still having seizure type episodes several times a day.  We think that only his next EEG will tell if there is any real improvement.

Will has not tolerated the side effects of the ACTH very well.  He is extremely irritable, and his smiles are becoming few and far between, although when we do get one of his precious smiles, it makes it all the more sweet.  His little legs are starting to look like pincushions.  Almost immediately after we got home from the hospital after beginning treatment, Will began having extreme intestinal distress and wasn't able to keep anything down, which meant for a lot of long days and sleepless nights.  That started to improve after a few days, which was a relief.  Then, over the past few days, his blood pressure began to spike.  The first elevated reading was on Friday, and it has pretty much gotten worse from there.  High blood pressure is a common side effect of ACTH, but his went higher than expected.  We had another reading taken today, and after consultation with Will's neurologist, cardiologist, and our amazing pediatrician (we are assembling quite the team of specialists) the decision was made to decrease his dose of ACTH starting tomorrow.  For now, his little heart just can't handle it.

At the same time, the doctors are preparing for Will's epilepsy review board panel.  Prior to any pediatric brain surgery at the Clinic, each patient's case is first presented to a panel of neurologists, neurosurgeons, and others at the Clinic to make sure that the best course of action is being taken.  We were told that for Will's review board there will be close to 40 people in the room.  It is awesome to think that so much brain power will be focusing on helping our son!

We have also made the decision to travel to Detroit later this month for a second opinion with a doctor there who is well known for treatment of infantile spasms, particularly for surgical candidates.  We seem to be getting close to making choices and decisions on brain surgery, and we want to make sure that we are doing all that we can for little Buster.  It is sort of ironic because prior to Will's diagnosis, we were in the process of trying to plan a romantic getaway for our upcoming 10th anniversary, but now it looks like our exotic vacation will instead be a trip to a hospital in Detroit...why can't the leading experts on infantile spasms practice on some tropical island somewhere?

Will has a lot of appointments scheduled in the next week.  He now has a standing appointment at his pediatrician's office every morning to check his vital signs.  They let us in through a side entrance and take us directly to a well child exam room because of his suppressed immune system, although we are hoping to be able to go back to the home health visits once they get his blood pressure under control.  Over the next few days, Will also has another MRI scheduled with sedation, an EEG, and a neuropsychological exam.  They are also going to do some additional DNA/chromosomal testing as well.  We are hoping that with all these tests, we will have more answers soon.


  1. Hi Kelly...I just want you to know how much I've been thinking about you and your family and how special you are. God Bless your beautiful baby. Love, Emily Phillips