Wednesday, May 16, 2007


WBC - 9300
Hemoglobin - 12.2
Platelets - 309K
Prograf level - 7.8 - perfect
Amakacin level - within levels
Weight - 12.1

David's been doing pretty good. His blood test last Monday was all great. His magnesium levels have been good too. They are monitoring the Amakacin levels and blood tests because Amakacin is hard on the kidneys.

Dr. Argawal saw him today in the Day Hospital while he was getting his monthly IVIG (immune boost) and Zenapax (immuno suppres.). She said the Acid Fast Bacilli has not been identified yet. It's considered a RAPID growing bacteria, they sent it out for RAPID identification, but there is nothing rapid about its identification.

She said to reduce the steroids to 1ml/once/day! Yeah! Michael will be happy about this news. We'll do another taper in 2-3 weeks if all looks good.

The plan is to go to the clinic for the next three Mondays for blood draws (checking Amakacin levels). Then on June 11, he will have IVIG and Zenapax infusions in the Day Hospital.


Anonymous said...

RBC are really high!!! Is he getting Rituxin or is he doing it all by himself? I hope the latter.


Aimee said...

I wish! He had a transfusion last week. Bummer.

Anonymous said...

Jacob's is down to 7.7 this week. I wonder what is going on. They will start testing next week.


José Manuel said...

Dear aimee,

My son has wiskott aldrich also. Doctors have doubts about which is the better option in his case (splenectomy or bone marrow transplant), he has only low count of platelets. I believe the future is the genetic therapy. I found this clinical trial from Genethon,

Jose Manuel.

Anonymous said...

Hi jose
I don't know where in the world you are but my son (who has WAS) sees Prof Adrian Thrasher at GOS in London (one of the Genethon partners) I saw him speak recently about the future of gene therapy and know that they are hoping to use it on a WAS suffer in London next year for the first time. He was very positive about the future and has been involved with the successful use of gene therapy for SCID patients. He did says that he expected gene therapy to be widely available in the next 5-10 years. My son William will be having a BMT in July 07 at GOS. Hope you don't mind me contacting you in this way.
Regards Catherine Curtis