Searching for Direction

Last week we woke up to see all of the trees outside covered in the most beautiful blanket of ice.  Dan took this picture of the weathervane on the roof of our barn.

We have been amazed by the support we have received from our family, friends, and even total strangers.  Within days after creating this site, Buster's Blog had logged almost 800 hits, and this is from a non-searchable blog!  Hopefully, everyone can excuse the typos, and misspelling of medical terms.  It is crazy for us to think that so many people might be reading this.

Will came down with a virus over the weekend.  He was a pretty sick little boy, but finally turned the corner yesterday.  Judging by the kids at Jack's preschool, we think just about every child in town has been sick lately!  Unfortunately for Will, that is causing some delays in his treatment.

The Dr. made the determination that Will has failed Topamax as there isn't really any change in his episodes, and we are going to be beginning ACTH.  He was to be admitted to start the tests and treatment yet this week, but because of the virus we need to wait until he has been healthy for at least a week as the ACTH will suppress his immune system.  Thus, for now, Will is still taking the Topamax for another week.  We were hoping to be able to get together with some friends this weekend before we have to go into semi-isolation, but we had to cancel as we need to do our best to keep him healthy so that his treatment doesn't have to get delayed any further.

ACTH, or adrenocorticotropic hormone, is a steroid injection treatment (it is kind of similar to Prednisone) which is sometimes effective for treatment of IS for reasons that doctors are not able to explain.  This side effects are daunting, but we have read posts from many parents referring to ACTH as a "Miracle Drug".  The cost of a course of treatment (approximately 2-4 months) is close to $100,000.  No, that is NOT a typo.  Because of its extreme cost, it is one of only 12 medications in existence for which the National Organization of Rare Diseases provides medical assistance.  Amazingly, we have been told that our co-pay for this will only be $40 per month.  Thank God for good health insurance!

We thought it might be helpful to post a little more information about Infantile Spasms (IS).  It is ironic because the seizures seem so mild and the name "Infantile Spasms" is so benign.  Yet, it is one of, if not the worst type of epilepsy that a child can have because of the negative effects IS can have on a child's development.  IS is a rare type of childhood epilepsy, affecting approximately 1 in every 5000 children.  Almost all cases of IS (90%) begin prior to 12 months of age, and most (but not all!) children who suffer from IS will have developmental delays or mental retardation later in life.  Will actually has what is termed late-onset Infantile Spasms, because he did not have his first cluster until he was almost 18 months old.  In fact, Will was developing completely normally until around 15-16 months, when we started to worry because although he babbles he still hadn't said his first word.  The prognosis is significantly better if a child was developing normally before the onset of the seizures, and we have to believe that since Will had almost a year and a half of normal development his chances are better than most.  Unfortunately, the one question we so desperately want an answer to - "Is our child going to be OK?" - is the one question that no one can answer for us right now.