As I was talking to a few of the ROHHAD mom's tonight I realized a few things we are still waiting to see since treatments. I'm not sure if the new ROHHAD children have these issues or not but other than eating/drink and weight we still haven't noticed a change in:
1. pain sensitivity - she doesn't really feel pain unless it's major
2. crying or producing tears
3. knowing when she's cold
4. voice modulation - she talks loud
Happily there are a million more symptoms we can see have improved. Not that I think it's a requirement to be able to cry it's just something she has never done in almost 6 years. What child never cries?
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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