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My son was just diagnosed with wilsons. Can anyone tell me how the meds react at first. They keep telling me they are hopeful that his test numbers will start to increase, however, they have placed him on a transplant list. How long does it take your nubers to improve and did anyone have an increase in test numbers immediatley following the start of medication?
I need to add that all of his test numbers had decreased just before the start of medication.
Hi Kitcat,
I can't give you direct numbers, because it's not clear which ones increased... unless you mean more copper is being removed into his urine.
If your son started on a chelator, it takes a little while before the copper is removed, I think. If he has started on penicillamine, his neurological issues are more likely to worsen. It would be better for him to take trientine.
If he has no neuro issues, has he been started on zinc? That also takes time, because it doesn't remove the copper. Instead it prevents more copper from being absorbed from food.
Have they told you not to feed him liver or other organ meats, shellfish, and to be careful with his chocolate intake?
People on the WDA Listserve might have more info. I know the website has good info.
Dvora
I was symptomatic with wilson's disease in 1971; that was before they did liver transplants for it. I responded immediately to the medication they put me on (penicillamine) -- within a few days of being on it, I had a boost of energy and my liver function normalized. So, keep him on the transplant list but hope for the best. Maybe he'll do well just on the meds, like I did.
Jeanne
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