April 22, 2009

High ACTH, medical loose-ends & online early learning

While most of Bertrand's 4/14/09 and 4/20/09 labs are still pending, one more result came back. His CSF ACTH was elevated at 349--normal range 5-46. (His earlier blood ACTH was mildly elevated at 62.) This is cause for retesting and/or potential steroid treatment. Fortunately, I had Dr. Sakonju draw extra CSF, so it is easy to send out to a different lab for an ACTH retest. I am waiting to hear back from Dr. Longo about possible steroid treatment.

I am still waiting to hear back from Dr. Sakonju about yesterday's CT scan and what she thinks about the results we've gotten back from Bertrand's spinal tap. The results we have so far should be able to guide us in both additional testing and symptom mitigation. Chiefly, my concern is that if mitochondrial disease is still being considered, that we have enough time to schedule the Atlanta muscle biopsy with Dr. John Shoffner for the week of May 7-17th.

Dawn, a nurse from Dr. Book's office, called me back. Bertrand's liver biopsy has been canceled, not postponed. Dr. Book has no desire to see him in her clinic again, either. My positive spin interpretation of this is that she is happy with and confident in Dr. Longo's work with Bertrand. (Dr. Longo is in fact fantastic, so I could see how such faith would be well placed.)

Today marked the begining of Bertrand's cyberschooling. We signed up for a beta test of the Waterford Institute's new early learning software for two year olds (even though B isn't 2 yet). Bertrand loved it! He stayed glued to the computer for 17 minutes (longer than the recommended 15)! While many things (ABC games, etc.) are advanced for him, I think that exposure is good. We'll see how he does with it over the next 6 weeks. :)

1 comment :

  1. I am so glad that Bertrand loves Computer school. His love for computers sounds like Matt ! His love for learning he inherited from both of you. Bertrand is a very smart baby.
    Love, hugs and kisses,