There is no reason to dwell on what happened in the past. The only thing I can do right now is look at the future. I could feel a lot of resentment towards the doctors who dismissed my daughter's illness or my worries. I could also feel a lot of anger towards the pediatricians who tried to make me feel like I was crazy. However, I have learned so much from my experiences and I have helped so many people that I almost look at it all as a big blessing in my life.
I have to share a recent experience I had with a wonderful doctor. His office is located in Florida (another state away from us), but he was referred to me by someone I trust very much. I called the office and they told me that he was out of the country and would not be back for another month. Last week, I checked my phone messages and he actually called me HIMSELF and left a very sweet message apologizing for not being able to contact me earlier. I almost fainted! I returned his call, but he was not in his office and his nurse said she would leave him a message to call me back. Of course, in the back of my mind I thought he MIGHT call me the next day or by the end of the week at best. Well... he called me on his way home that very same day!! We talked for about fifteen minutes and he was the sweetest and warmest doctor I have ever talked to. He listened to me and told me his recommendations for Sarah. He told me that he had actually called the Mayo clinic to inquire about the genetic testing that was done just to make sure that the diagnosis was correct!! He confirmed and validated the results to me. That made me feel so much better because I have had some doubts in the back of my mind concerning that very thing.
After telling him some background information concerning what I went through with previous doctors, he told me that unfortunately my story was not unusual. He said that basically most parents have gone through the same thing. He also told me that the neurologist who tested my daughter for copper and other various tests that others don't normally test for was "one in a million" and had a "head on his shoulders". I wish ALL doctors tested for those things. Some of the tests could explain so many disorders! It's amazing what blood can tell a doctor if you just give it a chance. I worked in the laboratory and I can tell you from personal experience that laboratory tests can sometimes tell the doctor more than the symptoms and physical exams... as a matter of fact, some doctors RELY HEAVILY on the laboratory testing. In many situations it's just a matter of what insurance will cover. That is so sad.
One thing I want to make sure to clear up is that the doctor explained chelation to me. I have been very scared about that and was unwilling to even consider it with my daughter. However, chelation is evidently the only way to get rid of the copper that has accumulated in the body. The zinc acetate is just a way to keep the body from building up any more copper in the body, but it doesn't get rid of what was there before. We are going to discuss that in depth at her first appointment with this doctor. I still feel that I wouldn't want to do something like chelation with doctors who don't know much about it. In other words, I don't want my daughter to be a guinea pig. At least with this doctor, he has treated almost ten pediatric patients so far and that is more than any other in my area. I want to discuss the side-effects and possible scenarios that could occur. After reading Dr. George Brewer's book, I was under the impression that zinc therapy was the first line of therapy for "asymptomatic" patients. That is something I definitely want to discuss with him. Is my daughter technically "asymptomatic" or not? I also want to know how to find out how much copper she has accumulated.
I have a dear friend who is not of my faith, but she reminded me that this experience is definitely a faith-building experience and a testimony that God does answer prayers. It's definitely a testament of my faith. I continue to rely on spiritual guidance and pray that the doctors do the same.
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Looking forward sometimes
means looking back and
realizing that you can
either agonize over
decisions made or learn
from those experiences.
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