An Answered Question

I wrote Dave Hill (runs the SS support group) a letter to get an idea of how quickly the loss of hearing goes. 

Well Dave,

I'm not just any other American, lol. I've got a lot going on with this fundraiser for Z and an interview this week with a local paper to express my concern that Superficial Siderosis is under diagnosed and I want to bring awareness to it so that more research can be done to find a cure.
When I spoke to Z's Audiologist she had never heard of it and spent 15 minutes researching while we waited to be called to the back for our appointment. She mentioned that there are a lot of children who are going deaf without any explanation. I believe SS could be one of the reasons.

The only thing I have right now is Z's online fundraising efforts which is located on his blogspot.

I do have a question tho ... I know that once hearing loss starts it goes fairly quickly. Do we have an estimated amount of time from start of hearing loss to complete hearing loss? Are there any of the members who might could share their experiences with us? 

Yes, it used to be said in medical SS write-ups that SS was not a child's thing but I think one day they'll clearly change their sayings.

If  I asked your question to Dr. Levy I know clearly he would say everyone is vastly  different, and we sure are. I can't even remember now how quickly I went down to minus  zero as my CI audiologist said I went to. My estimates are though it would be only a few months. Look back in early versions of newsletters for an accurate account from me.
Dave

I called the Audiologist in Goodlettsville and asked about testing Z again. She said that typically they don't test this quickly, right after testing, but I expressed my concern so they will be performing another test. I'm feeling like the Cochlears are going to be a part of Z's life a whole faster than we thought.

I try to make everything alright in my head, but this all stinks!! The feelings a person gets when she loses something precious is still there. Z is such a trooper and I thank my lucky stars that he is as laid back as he is. I feel like I'm having all the emotions of loss for him. My baby is quickly losing his ability to hear my voice.