A Letter to Dr. Levy, His Thoughts, Dr. Jordan's Thoughts & Then There's Pain

Dr. Levy

I was wondering if we could have a copy of the reports you and your  

team made when you reviewed Zachary's Myelogram. We think we  

understand your findings but would like to read them ourselves. It  

would be really nice if we could see pictures of the area that is  

causing the SS in Zachary. Not sure why powerpoint presentations  

aren't made for parents who want to see the details of their child's  

disorder, :) . It would be a perk, that's for sure, lol.

I also wanted to ask, if the leak is in a place where it can not be  

repaired, what else is there that we can do to slow the progress of  

the SS and it's symptoms? We aren't sure what else to do. We are
concerned about his immobility  and Dr. Jordan is working on a
plan for Zachary to figure out the issues with that.

Thank you, for all you do to help those who suffer with SS. We are in  

hopes that there will be a cure for it soon and that Zachary and those  

who suffer will finally be free from it's wrath.

Michelle Huguley

Michelle,

I think chelation therapy is Zachary's best option at this point. Even if the leak cannot be surgically corrected, you can use a medication to remove the iron that is depositing on the spinal cord. You just have to remove more iron than is being deposited. We previously demonstrated the efficacy of Ferriprox, an iron chelator that can reach the spinal cord, in a trial of 10 adults and it showed some improvement by MRI in as little as 3 months. We have expanded that trial to 20 adults for 2 years, but since the drug is now FDA approved in the US, you can consider a personal trial for Zachary. I've discussed this possibility with Dr Jordan.

Michael Levy


Dr. Jordan's thoughts about the Ferriprox ... (11/16/11)
What about Ferriprox? Is Z able to get that yet? If Z were getting worse then this would be something we would look into but because he's pretty stable right now and the drug has just been approved by the FDA I think we should just sit tight for now. I worry that with this drug being new and not widely tested that there may be side effects that would do more harm than good for Zachary, and we really don't want to put Zachary through that if we don't need to. I feel that this drug could help Zachary, but I think we need to make it a last resort, because it is new and we don't know what kind of side effects will come 
with it


PAIN
3:00 a.m. Zachary comes up to have his TENS put on ...