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Old Tue Jun 15, 2010, 12:57 PM
CDChilds CDChilds is offline
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Join Date: Jun 2010
Location: Lorena, Texas
Posts: 10
Hi there. My son Gage was diagnosed with AA when he was 3 years old. He's now 12 going on 13 in September. When we first found out that he had this illness he was considered moderate. His counts were stable until he was 6 years. At the age of 6 his counts started to decline, so Dr. Bowman at Cooks Childrens Hospital in Ft. Worth, Texas decided we should try our first round of ATG horse serum. The medication is given through an IV and its one large bag. It takes about one day to receive this medication. Everything after that is managing his syptoms. They began him on steriods, cyclosporine, benadryl for any allergic reation, tylenol for pain. He did have a few symptoms ranging from body aches, fever, rash, fatigue, headaches and grouchy. His blood counts begain to drop but that was to be expected. They gave him a few blood transfusions and platelet transfusions. This is very normal.

The headaches were the worst because the medications made his blood pressure rise. At this point they put him on blood pressure medication which controled the headaches. He also lost his appetite, however they stressed that the most important thing was to keep him hydrated. So we made sure that we had plenty of his favorite drinks.

Gage handled this treatment pretty well his first time. The only thing he really complained about was the benadryl. It made him very sleepy and all he wanted to do was stay awake and play video games.

The nurses and doctors worked around the clock to make sure the he was comfortable at all times. They even had a childlife specialist that came in before the treatment to explain to Gage what was going to happen to him. This was done in such away that Gage was less affraid.

The hospital stay for ATG is usually about one week to ten days. After that you will go home and begin your own care for your child. Expect to have weekly blood draws to monitor the progress. It took Gage almost three weeks after treatment to really start seeing a change in his counts. The started to rise. However, he ramained on cyclosporine and steriods for about 6 months after treatment. Then they begin to tapper his meds down until he was not on any medication at all. His blood count became normal for a while. About 2 years and then he relapsed. However, I do know of several children that ATG has put them in complete remission. Every child is different.

My son Gage has underwent two rounds of ATG since the age of 6. He is now almost 13years old. Over the years he has come to understand his illness better now that he is older. Gage handles his illness better than I do. LOL He's happy, well adjusted little boy. Even though he has his limitations it still does not stop him from finding joy and excitement in his life.

I hope I have eased your mind a little bit. If anything, just knowing what to expect can be help a great deal. If you have any questions or just need someone to talk to please feel free to contact me anytime.

My prayers are with 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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