May 10, 2010
Neela went to the University of Iowa Hospital today to see Dr. Richard Smith, MD. He was very pleasant to Neela and I. His plan for Neela is to start the series of injections called Ok-432. Neela will be in a "study" of his, since the medicine is not FDA approved. The medicine is made in Japan. It is sent over to the United States for Dr. Smith to use in studies of his. He has about 12 other sites in the US that he uses this drug in his "study". The drug itself has a 80-90% success rate in helping shrink the macrocysts, like Neela's. Her first injection is June 1. She will be put under general anesthesia for this, so this will be good for her sake. The side affects of this drug are swelling in the injection site, fever and feeling like she has the flu. This may last several days after the injection itself. She can receive up to four of these injections, six to eight weeks apart. So this will be a long summer with driving to and from Iowa City. After these macrocysts are cleared up, they will try and work up the microcysts that Neela has. They don't do any injections with these, but can possibly do surgery. The doctor said that we should just concentrate on the big macrocysts first, then worry about the micros. I have complete and full confidence in this gentleman, as he cares for our baby girl this summer, and in the future. I know that he is very knowledgeable and trustworthy. He has a nurse that works along side of him named Diane Burke. She is amazing and very helpful. She has great empathy towards these families that seek Dr. Smith's care. I think she will be a great person to have along board with this course of treatment. Please continue to keep our family in your prayers, as we are just starting out with Neela's journey.
Neela went to the University of Iowa Hospital today to see Dr. Richard Smith, MD. He was very pleasant to Neela and I. His plan for Neela is to start the series of injections called Ok-432. Neela will be in a "study" of his, since the medicine is not FDA approved. The medicine is made in Japan. It is sent over to the United States for Dr. Smith to use in studies of his. He has about 12 other sites in the US that he uses this drug in his "study". The drug itself has a 80-90% success rate in helping shrink the macrocysts, like Neela's. Her first injection is June 1. She will be put under general anesthesia for this, so this will be good for her sake. The side affects of this drug are swelling in the injection site, fever and feeling like she has the flu. This may last several days after the injection itself. She can receive up to four of these injections, six to eight weeks apart. So this will be a long summer with driving to and from Iowa City. After these macrocysts are cleared up, they will try and work up the microcysts that Neela has. They don't do any injections with these, but can possibly do surgery. The doctor said that we should just concentrate on the big macrocysts first, then worry about the micros. I have complete and full confidence in this gentleman, as he cares for our baby girl this summer, and in the future. I know that he is very knowledgeable and trustworthy. He has a nurse that works along side of him named Diane Burke. She is amazing and very helpful. She has great empathy towards these families that seek Dr. Smith's care. I think she will be a great person to have along board with this course of treatment. Please continue to keep our family in your prayers, as we are just starting out with Neela's journey.
Good luck and my prayers are with Neela, you, and your family!
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