Our daughter who is 6 years old was not on any drug therapy until recently. The only thing doctors suggested for us was liver biopsy and consequent chelation therapy if the numbers were high enough. The problem with this mode of treatment is that they are basically waiting for the patient to get "sick" before treating. This is the equivalent of a doctor waiting for a diabetic to lose their kidney function before starting insulin. Luckily, as I have said numerous times, I have been surrounded by guardian angels who have guided me through the process of keeping my daughter well. I am so thankful that I did not ignore the warnings and counsel that were given to me.
The main reason for this post was to update you all on how my daughter is doing on this new treatment and to offer some advice. First of all, she is taking 25 mg. of Galzin (Zinc Acetate) three times a day. The biggest challenge for us is making sure that her stomach is empty. She has a big appetite and usually eats mini-meals throughout the day. Also, when school started that presented YET another challenge for us. How did I ensure that she took her medicine on time and on an empty stomach when they have snack time at about the time she is supposed to take her medicine? I went to the school and talked to the nurse. She was so sweet and gave me a great idea. She told me that I should send a special water bottle with her to school and that way she could sip water during snack time. This was also a good way to ensure that she didn't drink tap water. We found out recently that the copper level in our water is higher than it should be for her. We try to give her only filtered water at home.
I want to stress an important point right now. While we were trying to get a diagnosis years ago and the doctors ignored my concerns, they did a random urine copper on my daughter and the results were normal. A year later they did the 24 hour urine copper and again it was normal (in the 40's range). However, right before she started taking the zinc acetate her 24 hour urine copper was 68 which is a little higher than normal. NOW, after only a month of medication, she is in the normal range. Her latest value was 54. We are so excited! I urge parents to not ignore their instincts. I did not know as much THEN as I know NOW. After reading Dr. Brewer's book I understand that in asymptomatic patients the results can often be misleading. EARLY INTERVENTION is the key. You MUST start treatment right away. The longer you wait, the more damage there will be. The more damage there is, the harder it will be for the patient to recover. It is possible to recover if caught early enough. It is possible for a patient with Wilson's Disease to live a long and healthy life. The biggest mistake anyone can make is to have a "wait and see" attitude with Wilson's.
So far, my daughter has had no side-effects on Galzin and it is definitely working for her. I am so glad we were able to avoid the chelation therapy and liver biopsy. I am still trying to learn as much as I can about how the 24 hour urine copper range is used to monitor Galzin. According to Dr. George Brewer, the "normal level of urine copper of 20-50 micrograms per 24 hours is not reached for many years, if it is reached at all, because of the extensive body loading of copper in Wilson's disease." I guess a value of 54 is not too bad after just a month of treatment. That is very reassuring for me.
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Don't delay....start today!!!!!!!
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