I'm glad to hear your son's pain is finally controlled. That must be a relief to everyone involved. I will let Dr. Jordan answer your questions below as she knows your son, but I can add my expertise on one of the issues, which is disease progression. Many of my patients accumulate iron for decades before they have symptoms, other have symptoms within a few years. Some patients have iron in their brain discovered incidentally and they have no symptoms! There is no way to predict for your son. Generally, hearing loss is the first sign of superficial siderosis so that's one thing you should be looking out for.
Michael Levy, MD, PhD
Assistant Professor, Johns Hopkins University
Medical Director of General Neurology, Johns Hopkins Hospital
600 N. Wolfe Street
Pathology 509
Baltimore, MD 21287
443-287-4412 phone
443-287-4062 FAX
My thoughts ....
I think it's important for us to try the manual traction apparatus, I mean, what have we got to lose. There is no known cure for Superficial Siderosis and there is no one that we know of that is having the same kind of problems that Z is enduring. This is the only thing that's available to us that gives us hope for Z to regain his mobility. We just can't sit still and wait for this to progress, it wouldn't be right to just sit and watch Z curl up into a ball. He's growing and he's growing fast "his spinal column is increasing and his cord is not increasing at the same rate" the scar tissue and adhesions are now our enemy and we will do whatever we can to defeat them!
Plan of Action:
Visit Dr. Brown two to three times a week. Z will be adjusted twice and will do his warm ups twice while in Dr. Browns office. He will eat healthy and take Max Recovery so that his body can heal fast from the adjustments. He will do his exercises and stretches twice daily. And be measured for Neural Tension once a month. Zachary will also have his hearing checked to be sure that he is hearing like he should and it will be checked often to watch for the progression of his disorder. Well, there you have it!!
Assistant Professor, Johns Hopkins University
Medical Director of General Neurology, Johns Hopkins Hospital
600 N. Wolfe Street
Pathology 509
Baltimore, MD 21287
443-287-4412 phone
443-287-4062 FAX
My thoughts ....
I think it's important for us to try the manual traction apparatus, I mean, what have we got to lose. There is no known cure for Superficial Siderosis and there is no one that we know of that is having the same kind of problems that Z is enduring. This is the only thing that's available to us that gives us hope for Z to regain his mobility. We just can't sit still and wait for this to progress, it wouldn't be right to just sit and watch Z curl up into a ball. He's growing and he's growing fast "his spinal column is increasing and his cord is not increasing at the same rate" the scar tissue and adhesions are now our enemy and we will do whatever we can to defeat them!
Plan of Action:
Visit Dr. Brown two to three times a week. Z will be adjusted twice and will do his warm ups twice while in Dr. Browns office. He will eat healthy and take Max Recovery so that his body can heal fast from the adjustments. He will do his exercises and stretches twice daily. And be measured for Neural Tension once a month. Zachary will also have his hearing checked to be sure that he is hearing like he should and it will be checked often to watch for the progression of his disorder. Well, there you have it!!
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