Hannah’s 3-month Gaucher Marker update

2 Jun by Carrie

We got the results from Hannah’s gaucher markers bloodwork.  These are the three levels that are incredibly raised when the patient has Gaucher’s Disease.  I’m waiting to hear back from Dr. Schiffmann on whether this is what he had hoped/expected, but they do look significantly down in just three months!

From 2/9/09 to 5/4/09:
Angiotensin converting enzyme (ACE) – 205 IU/L down to 102 IU/L  (normal 26 to 106)
Chitotriosidase (CHITO) – 636 nmoles/hr/ml down to 215 nmoles/hr/ml  (normal 4 to 120)
Tartrate resistant acid phosphatase (TRAP) – 52.1 IU/L down to 20.2 (normal 3 to 10)

~ Filed Under: Hannah's Fight

Comments

  1. laane says:
    06/02/2009 at 2:46 pm

    That’s a considerable decrease.
    Does Hannah feel a bit better?

    I’m curious about what he has to say.

    laane’s last blog post..Do you care? Or not?

  2. heather says:
    06/02/2009 at 3:20 pm

    are these results the ones that would tell you if the cerazyme is working?

    looks good to me!

  3. Susan Lauver says:
    06/02/2009 at 5:13 pm

    Hello!

    I just found your facebook site and joined, and followed your link to this page. I wanted to tell you that Dr. Schiffmann also cared for my son when he was with the NIH. We also worked closely with Dr. Greg Grabowski at Cincinnati Children’s Hospital-they have a huge lysosomal storage disorder center.

    My son, Evan, was atypical in presentation as well. He was born with rampant hepatosplenomegaly, but neurologically intact-no colloidial skin either. We eventually learned that I carry the common L444P mutation, but husband carried a heretofore unseen mutation. Consequently, we didn’t know what to expect as far as Evan’s outcomes.

    We were fortunate to participate in a clinical trial at the National Institutes of Health. I’d be happy to share more information about our experiences there if you’d like to get in touch.

    With best regards,
    Susan

  4. Cristina says:
    06/02/2009 at 5:23 pm

    Those results look fantastic to me! 🙂

    Cristina’s last blog post..NIH Evaluation & Speech Pathology Session

  5. Petula says:
    06/03/2009 at 2:04 am

    I’m glad to see the decrease in the numbers. Excellent work, little Hannah. 🙂

    Petula’s last blog post..Hair-y conversation

  6. Karen says:
    06/03/2009 at 11:33 am

    Yeah for lower numbers. I hope the doctor is happy with the results as well.

  7. Mary Pruitt says:
    06/06/2009 at 3:12 pm

    I am not sure what those numbers mean, but lower has to be better!!!!!!!! Yeah Hannah!!!!

    Mary Pruitt’s last blog post..So….