June 18, 2009

Valium & Fibroblasts

We started the day off right with an email from Rena, our genetic counselor. Rena said that the remaining lysosomal storage disease (LSD) fibroblast (skin cell) tests came back negative! This is fantastic news, as these remaining LSDs are untreatable, incurable and fatal. We'll be seeing Rena and Dr. Longo next Wednesday to discuss next steps and, certainly, the liver biopsy.

Also, Bertrand's alpha fetoprotein (AFP) level came back at 67.3! This is the lowest it has ever been! The normal range is 0-15, so it is still significantly elevated, but we'll take 67 over 971 any day. :) Now we need to figure out why his liver functions went up but AFP went down. Our visit with Dr. Book should be, theoretically, enlightening... but, since it's Bertrand, probably not.

Lastly, Bertrand has taken valium two days in a row. The pharmacist warned us that it would knock out a much larger child and to use *extreme* caution. Which goes to prove that pharmacists are not doctors, because the valium has almost no visible effect on Bertrand. About the only difference was that he was his usual ornery self at Shriner's therapy today instead of the compliant, over-stimulated lump of meat he usually turns into there. So, ha! I took perverse pleasure in watching the therapist deal with the real Bertrand for once. ;)

All in all, a good day.


  1. I an adult, Valium will sedate and relax, this in emotions and on the muscles. In children though this drug may not have the desire effect of relaxation, on the contrary it can agitate them. This also happens with many other drugs meant to sedate or relax. I would tell his doctor for another alternative. Please give Bertrand hugs and kisses from me.
    Love to all,

  2. Valium is one of the few that doesn't effect the liver. We're limited in our options due to his elevated liver function.

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