Reply To: Update on Emily

October 26, 2006 at 10:43 pm

Ali –

The dr doesn’t really know. She said that mold can cause neuropathies but at this point we just don’t know.

We really need to have the mold tested to see what kind is growing in there. Then we’ll be able to better determine if that is the cause.

Honestly, in my heart I feel that the mold is playing a part in this. Emi’s been sleeping in her room since she was 6 months old. What are the odds that there would be this ongoing leak with mold growing here & Emily having CIDP but they are not connected? Kids aren’t supposed to get CIDP – it’s an older adult disease. My feelings are that something triggered it. It wasn’t immunizations & it wasn’t an illness so what could it be?

I also think that she does have CIDP. She fits the disease perfectly with her symptoms. The new neuro is just being cautious because of the way that our case has been handled. She didn’t see Emily at her worst & I believe if she would have then she would know that it really is CIDP.

I am so stressed out over this. I feel like we’ve taken step backwards instead of forwards…like 10 months worth of steps. It’s very frustrating but I know that it is necessary & for the best.