Friday, June 21, 2024

NPC Parents Theory Forum

Theory Forum

The "Theory Forum" is an area of the website dedicated to parents who have NP-C kids so that we can share anecdotal information with each other.  As parents with NP-C kids, we are living in a clinical trial situation each day.   We are all trying various measures to stop this horrible disease.  We also need the world to know who we are and all that we are doing to fight this fatal disease.  We want to hear from all of you from around the world who have NP-C kids.

Specifically, we want to focus discussions on potential therapies that may or may not be working in our children.  What types of medications or herbs are your trying in your kids, what you are noticing about your children’s behavior when you try new things, what is the rate of progression of the disease?   There are a few topics listed below to get started.   If you would like to add a topic that is not listed, post it in box below and we will create a new category.


No Responses to “NPC Parents Theory Forum”
  1. Nancy Trombley says:

    Sorry to write so much, but I forgot to mention we also give Michelle melatonin before bed to help her sleep well.

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