More Questions for Dr. Jordan

I still don’t have access to your email, they said I had to sign papers or something at Vanderbilt and I never think about it when I’m there.

There are other case studies of this disorder are there patients who were successful in finding the leak and if so... What tests were done? Any damage that was done were they able to reverse them?

In your professional opinion. If we aren’t able to find the leak what is Zachary’s prognosis? 

There are patients who don’t know they have this disorder until much later is Zachary’s leak worse than theirs because he was diagnosed so early on and he is losing mobility and experiences pretty intense pain?

Not sure ... he got the scan earlier, with most children they don’t get scanned. Z just had better care than most. 

I’m sure that you have consulted with Dr. Levy and any other doctors who may know of Z’s case. What were their thoughts about the recent test? And where do we go from here?

CT Meylogram inject a dye and take pictures look for fluid going into sack. They do find leaks in people who don’t have the average symptoms of headaches. This test isn’t normally used for the type of findings we are looking for. Dr. Jordan wants to do this test with someone who has the proper expertise to find the leak. 

I’ve read about a chelating (key lating) agent, still don’t know a lot about it, but was wondering. Would it help break up the old blood so the body can reabsorb it better?

The chelating agent can help in most parts of the body but is isn’t able to get to the brain and spine, because the natural defense of the body is to protect those parts of the body. There is an Ongoing Clinical Research Study on ...

Deferiprone in SS. Testing the safety and efficacy of a lipid-soluble iron chelator. 90-day trial. Recruitment of 10 patients for this pilot study has been met. We are not recruiting any more patients. Start date: Spring 2010. End date: Fall 2010.

Future Clinical Research Study ...

Deferiprone in SS, expanded. Based on the preliminary success of deferiprone in our pilot study, we are planning an expanded study to include more patients and use the drug for 1 year. Expected start date: Summer 2011.

This is only approved to be tested on adults right now. Zachary would be a good candidate for this test, but because he is a child he doesn’t qualify, however, if we get to the point where there isn’t anything else we can do and he isn’t doing well or is progressively getting worse. We can call for a compassionate order to get Zachary approved to take the drug, that is if the risks out way his quality of life/his prognosis.