August 22nd, 2008

For those keeping up to date with Sarah's progress, I have posted a recent e-mail from Jennifer.

Again THANK YOU to everyone for continuing your thoughts and prayers.

 

Jennifer's Note:

Hi,

  Well, I wanted to update everyone on how our little Sarah is doing.  We met with the pediatric neurologist, Dr. DeRoos, this morning here in Marquette.  He came up from Grand Rapids for a specialty clinic at Marquette General.  It was nice to not have to travel downstate again this time. :)

  The last two EEGs have shown some improvement, but unfortunately not the marked improvement he was hoping for.  So, he is doubling the dose of ACTH for the next two weeks.  Because of the significant side effects of the ACTH, Dr. DeRoos doesn't want her to be on it any longer than 8 weeks total.  We are seeing one of the side effects crop up this week with a significant weight gain.  Sarah was 20 lbs., 15 oz. last Friday, and was 21 lbs., 14.4 oz. today!  Since she's already been on the ACTH 6 weeks, we are going to keep her on it for 2 more weeks, and reevaluate at that point.

  When she has her next EEG in 2 weeks, if it is not as improved as Dr. DeRoos had hoped, then we may have to switch to an oral prednisone or just keep her on the Zonisamide that she's on, and hope it helps.  He said there is another medication that works well for this disorder, but it is not available in the United States.  We'd have to get it from Canada, and we're not sure the insurance would cover it.  So, we're really hoping it won't have to come to that.

  I had also been reading more info online about Infantile Spasms at a website made by parents with children who have been diagnosed with this disorder.  The site is ... www.infantilespasms.com if you're interested in reading more about it.  Anyway, many of the the things I've read say that there is over a 50% chance of a child diagnosed with IS to have a seizure disorder later in life.  I was shocked by this percentage, and so I asked Dr. DeRoos about it.  He said it is probably just over 50%, and if we can't get the IS controlled soon, that percentage goes up.

  We also had the social worker put in a referral for Early On, the Early Intervention Program here.  They will call soon to set up an evaluation for Sarah.  Dr. DeRoos feels her motor skills are definately behind, and it wouldn't hurt to have her evaluated.  Since we completely believe in the effects of early intervention, we are hoping to get help soon.

  So, although this isn't exactly what we wanted to hear, some improvement is better than no improvement or more regression.  Please continue to keep us in your thoughts and prayers.  It has really helped IMMENSELY to know we are surrounded by all those positive thoughts! :)

  Hope all of you are doing well, and hope to hear from you soon!

The Bleckiner Family