Ethan's Story

Saturday, August 4, 2007 9:44 PM CDT
Ethan was diagnosed with this rare disease on August 1, 2007. He started getting sick on July 25 when it all began. He had a fever that sent us to ER, the next day in the Dr. office we learned all three cell linages were low. This caused total painic and a trip to Children's Hospital. We knew what the diagnosis was because 5 years prior his sister was dx with hlh. There is no TEST for hlh. Everything else has to be ruled out, like every infection or virus or malignancy.
This disease is a deffect in the immune system. Something, usually a virus or infection, starts the immune system attacking the foreign matter. Once it begins it can not stop or turn itself off. It starts to attack everything including the blood and organs, sometimes the cns can be affected and the brain. Ethan's liver and spleen began to swell and was all the way down into the pelvis and his liver was close to failing, he was yellow, his eyes were yellow, his skin tone was so pale. He received 3 blood transfusions, 3 platelet transfusions, and a broviac placed in his chest.
The chemo and steroids were started on August 2. The next day the swelling was starting to decrease, and he has responded great to treatment. The only cure is a bone marrow transplant or the disease will return, the next time with avengence.

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EMAIL AUTHOR
dlblank@showme.net
HOSPITAL INFORMATION
Children's Hospital St. Louis MO United States





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