Wednesday, March 2, 2011

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.


  1. Luckily for little Will he has amazing parents like both Kelly and Dan to be such great advocates and taking every step of ensuring he gets the best care there is! I assure you Will will have the greatest care offered in Pediatric Epilepsy. We will be with you every step of the way in supporting you with whatever any of you need, whether it be a hug or a simple cup of coffee! The staff at CCF truely has the answers to make him into the perfect little boy you see everyday. The doctors and nurses are already speaking so highly of both of you and how adorable he is. They can't wait for your arrival ( as odd as that may seem.) I've made it a point to tell them how special you are and will try and make this as smooth as possible!

  2. I read your post with tears in my eyes. Wish I could be there to give you a hug, and to bring my (also isolated) little boys to play with yours! You (and little Will, and Jack too) will make it through this, but challenging days are ahead. We will keep you in prayer, especially during your hospital stay.

    We are thanking God with you for good insurance, and will pray for peace and great results very soon.

    Bree & family

  3. Dan and Kelly...We heard about Will last night from Sonya, then Grandpa Dan sent us this link to your blog. Although we had not met Will yet, we have heard many great things about him from Bev and Dan :) We are saddened to hear of his struggle with IS. Please know we are thinking of you and will keep you all in our thought and Prayers. Thank you for this blog to help us understand IS, and keeping us updated on Will's journey. God Bless...

    Mark and Patti Dolezal

  4. John and I are praying as is our whole church congregation. May God bless your whole family (extended). We will watch for your updates. And we hope he responds to this treatment without too many side effects. The See Family

  5. We just recently heard about Will through Grandpa Dan, who then sent us the link to the blog. We are still in shock. We are so saddened to hear of his illness with IS. We are keeping Will as well as the entire family in our thoughts and prayers. Will has two incredible parents along with a wonderful and supportive family.

    We are maintaining positive thoughts that he will come through this flying colors!

    God Bless,
    The Linns