Zinc Acetate... is it a better alternative?

Recently my daughter's doctor wanted to start chelation therapy for Wilson's Disease. He told me that it was a better alternative to doing a liver biopsy. Of course, when I heard those words I agreed. I left the office still feeling uneasy since my daughter is asymptomatic and they just don't seem to know what to do with her.

I went home and did what I do best.... I googled and researched my heart out. I came across a name of Dr. George J. Brewer. He knows so much about Wilson's Disease that he actually wrote a book! I was able to read some excerpts I found online and it made so much sense! This book is intended for doctors who are GI specialists or liver specialist. He talks about symptoms and things to look out for. He also cautions that Wilson's Disease is often misdiagnosed or not treated properly. He goes over a few different scenarios and how important it is to also test family members of patients with Wilson's.

I went to one of my favorite websites: www.mayoclinic.com (since they are the ones who do the testing for Wilson's Disease) and found some information concerning chelation and different drugs. I also found some information on zinc acetate. According to the information I read, it said that chelation drugs are very dangerous and that if the patient is asymptomatic the doctor will usually begin with zinc. I thought about this and continued my research. I contacted someone from the Wilson's Disease Organization and they confirmed that the chelation drugs are very nasty and have some serious side effects. I knew that since the doctors had told me that to begin with. I still didn't want to make any haste decisions... so I decided to call the nurse and tell her my concerns and ask her if the doctor had considered zinc acetate as a possible treatment? I told her that I was confident that he had, but I would feel better hearing it from her.

I just got a phone call from the nurse and she said that the doctor did some research on the zinc acetate since he didn't know much about it and found that it would probably be the best route to take right now. He felt better about going that route versus chelation. I am once again disillusioned with the whole situation. I thought he would be on top of things, but it seems like I am the one doing the legwork. They are the ones getting paid the big bucks. I thought they would take a special interest in her since she's such an "enigma" .... to put it in their own words.

My husband purchased a book entitled: "Wilson's Disease: A Clinician's Guide to Recognition, Diagnosis, and Management" written by George J. Brewer. Dr. Brewer has seen over 300 patients with Wilson's Disease, including many younger patients with no symptoms. I would love to talk to him, but this is going to be the next best thing. The book should be arriving soon and I am going to read it from cover to cover! The more informed I am, the better I will feel. It is obvious to me that I have been an integral part in my daughter's success so far and I intend to do all I can to ensure that she stays healthy. I am not going to wait until she has liver failure or hepatitis to be proactive. I am not going to let this "disease" get the best of my daughter.... not by a long shot!
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I am not going to sit back and let
this disease take charge.
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