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Recent Response To ATG/CYCLO

From: Dave

Date: 11/22/2003

Time: 9:29:27 PM

Remote Name: 207.207.243.161

Comments

Our daughter, who is 17 years of age was diagnosed with SAA on 6/4/03. We were referred to a local and excellent Hemotologist after she suffered a severe drop in blood counts. Next, we met with Dr. Neil Young(NIH), who confirmed SAA. After going thru the process/decision making and no sibling BMT match, we decided to proceed locally with ATG/CYCLO on 7/14/03. Our daughter felt more confortable close to home vs the NIH, that was a difficult decision based upon who and where will provide the very best/expert care, especially for all of us who never heard of SAA. But, we had faith that the recommended treatment could be administered locally. After CBC’S being checked twice a week with periodic transfusions, a slight bump took place on 9/10/03. A very short celebration, you need to pray and think positive always. Just when we thought this upward trend was progressing, on 9/14/03 she was in the hospital with high fever/infection/low CBC’S. She was released 11 days later minus the pic line. The line lasted about 2 mos., not bad from what we have read. Our daughter’s last transfusion was on 9/16/03. She just went from once a week to twice a month CBC visits.

CBC prior to ATG
WBC – 1.7
HG – 4.4
PLATELETS – 11K
ANC – 1K

CBC as of 11/13/03
WBC – 5.0
HG – 9.0
PLATELETS – 63K
ANC – 2935

We thank God for the response and hope for continued progress, not only for ours but for yours.

I am always asking "What caused this"? If I am not mistaken 60% of all AA cases, the cause is unknown. In my daughter’s case, she was treated with antibiotics because of a positive test for Lymne’s disease several months before the SAA diagnosis. If anyone can direct/help me with this subject I would greatly appreciate it.

In conclusion, We want to thank everyone that has made this forum possible.

God Bless You,
Dave
bailey60502003@yahoo.com


Last changed: September 24, 2006