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Old Tue Jun 15, 2010, 09:22 PM
CDChilds CDChilds is offline
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Join Date: Jun 2010
Location: Lorena, Texas
Posts: 10
Before we decided to go forward with the second round of ATG we wanted to get another opinion. So we decided to contact Dr. Neil Young at NIH, National Institutes of Health in Maryland. Dr. Neil Young is one of the formost doctors in regards to Aplastic Anemia. So we made an appointment and they did bone marrow core biopsy and took lots of blood. When we spoke to Dr. Young he felt that Gage was not severe enough to go forward with a BMT and he thought it was best to try ATG again.

Based on this information we went forward with the second round of ATG at Cooks Children Hospital. Instead of using the horse serum they decided to use the rabbit serum. This took place in the summer of 2008.

With the rabbit serum Gage had a the same symptoms but they were a little more intense. Everything seemed to be a little harder the second time around. I'm not sure if this is because he was older and more aware of his illness. however, he did experience fever, severe headaches, allergic reaction to the platelets, rash on his stomach and back, a few mouth sores. But I think this time the bodyaches were a little worse. Please understand that when your daughter goes through her treatment that her blood counts will get very low. This is normal and the reason they give the blood products during their hospital stay.

The only thing I can remember that was really different was that when we came home he experienced "serum sickness". This is a delayed immune system response to the animal protiens in the ATG. The first week we came home he became very sick with bodyaches and high fever. So we went back to the hospital for an overnight stay. After antibiotics, and benadryl and pain releivers, he was able to go home the next day. Gage had to continue his steroids and cyclosprine upon going home. His meds were reduced over a period of about 6 months. However, they did decide to keep him on his medication longer the second time around. Currently his doctor is trying to wing him off the cyclosporine to see how he responds. He only takes 1.1 mil twice a day. Its a very small amount.

Gages counts have never been normal even after the ATG treatments. However, they did stablize for about 2 1/2 years each time and he has been able to have a relatively normal happy life. His counts are stable but the do tend to go up and down.

My husband and I debate almost weekly if we should do the BMT. I have two other children that have been HLA typed but they do not match. We did a preliminary search for a BMT last year. They have found an unrelated. match in Europe. I was told Italy. However the man is 50 years old. We are currently on hold about the BMT at this time.

During your stay at the hospital ask as many questions as you can. Dont feel like they are unimportant and stupid questions. Even if you are repeating yourself. At the time I was in the hospital with my son I kept a journal. I wrote everything down that was done to my son. And I mean everything. My journal was my way of keeping track of what was being done and the medications that were given. I kept notes on how my son felt after each medicaton. When a nurse floundered about his medication, I could always rely on my journal to make sure everything was running smoothly.

Please contact me anytime and keep me updated on your daughters progress and recovery. I'm here for you.

CDChilds
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CDChilds, mother of Gage age 12; he was diagnosed with AA at the age of 3 yrs, 2001; treated with twice with ATG; currently on cyclosporine.
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