December 4, 2010

3 Month Post-Infusion Report

Starting early November, our family started to receive "gifts" that are possibly the courtesy of stem cells. This is the three month post-infusion report to Dr. Kurtzberg, who conducted Bertrand's autologous stem cell infusion at Duke University in late August 2010.

Hi Dr. Kurtzberg,

I've been putting off this email because I didn't want to "jinx" the small, positive changes Matthew, Bertrand's therapists, and I have seen in Bertrand. ;) Up to this point, there has been no change in his medication, therapy or other interventions (but he'll be starting a new AED next week because there has been an increase in seizures since his steroid wean). That said, here are some of the changes we've seen, starting early November.
  • Improved eye contact
  • More frequent vocalizations and greater range
  • Less extraneous movement (he feels more stable and calm)
  • Playing with new toys
  • Opening hands more (not as fisted) and will brace himself
  • Using fingers
  • Posture is more relaxed, with shoulder forward and arms down
  • Initiates trying to get up or change position
  • Can abdominal crunch to get into sitting position
  • Can wipe at his nose
  • Things such as a stuffy nose now bother him
  • Enjoys getting his hair brushed, being touched
  • Engaging in more stiming behavior - teeth grinding, rubbing textures, playing with things
We don't know if these changes were natural, the result of the infusion, or what, but we are grateful for them. I've spent over 2 years working with Bertrand, every single day, on improving his sitting and having his shoulders forward, to then one day have him spontaneously start doing it on his own?! It is fantastic!

Thanks and happy holidays!


  1. GOOOOOOOO Bertrand!!! Cristina, this is amazing progress. I've said the same thing to Dr. K—I didn't know whether Max's progress was due to the stem cells or what, but we'll take it.

  2. Hurrah! So happy to read this post!

  3. Go, Bertrand! You are my hero! Love, Titi Lili

  4. All meaningful changes! Very happy for your family and grateful to you for sharing Bertrand with us. Barbara