Again, another controversial topic. Oh well, here it goes...
The U.S. National Institutes of Health does research on Copper Histidine. This web site is:
http://clinicaltrials.gov/ct/show/NCT00001262;jsessionid=795002C1AA95DB01C9646A5271B5DDAE?order=1
You may decide to try out the Copper Histidine (or Copper Chloride) treatments. It's okay with us if you do; we have chosen not to. Here's why:
 | Jack is not formally eligible for the National Institutes of Health's (NIH) Copper Histidine treatment protocol since he had a lot of neurological symptoms by the time he was diagnosed and NIH has not found significant improvement when copper treatments were started after symptoms. |
| Even with very early diagnosis and treatment (usually less than 30 days after birth), only 25% of Menkes children seem to have successful neurological outcomes, which never includes a cure. |
| Children who are older than a few months may have some responsiveness including "sleeping a little bit better or having less irritability," but that's it. |
| Excess copper can be associated with kidney toxicity (i.e., a form of mild renal tubular dysfunction). |
| If we really wanted to, we could get Jack twice daily injections of Copper Chloride, a commercially available version of copper that would normalize his blood copper levels but that reversal of his condition would be unlikely AND this would require twice daily injections. If you've read our discussion on To Tube or Not to Tube, then you will understand why we are not interested in either twice-daily injections or other tubes. |
| Finally, we were told that most other families with older Menkes children (older as in "older than three months") who began copper injection treatments decided that the treatments were not worth continuing since there was no change or marked improvement. |
Like the tube decisions, this is another difficult decision with an over-abundance of opinions from everyone. Especially knowing this, we do not want to add any more grief or difficulty to anyone's life.
If you have already decided to do the copper histidine treatment, then know that we are not here to judge you and we trust that you have made the best decisions in your circumstances. We would appreciate the same from you.
NOTE: We are not health care professionals and consider the above comments to be personal reflections on choices we made/make. We accept NO liability for your choices. Talk to your own doctors before making a decision or a change to your son's treatments or care.