Kristi

General Parents and Caretakers of Children with Chiari
1

4 more days until Kristi sees the ns. I can't wait to get some answers. Her vision keeps going blurry and for about the last week or so she has been loosing her voice on and off. Is this a symptom of the Chiari? She also says that her tongue feels furry?? I'm not too sure what that means. She feels sick to her stomach and having sharp pains in her sides. Her back, neck, and head always hurts. Sometimes worse than other times. Lately she has only been sleeping for a couple of hours at night then she wakes up and can't fall back asleep.

School starts back up on Monday. She already missed the last week before the holiday break. I am worried that she is going to have to do her freshmen year over. She already is already upset enough because it looks like she will not be able to play JV softball this spring. Softball is her life. Is she ever going to have a normal life again??

2

I'm not sure what normal is anymore. Once you get her pain somewhat under control, she will be able to get some normalcy back. On the tongue feeling furry, I think I know what she means. I've learned to drink more water and when I don't my tongue almost gets that cotton-mouth feeling.

Mention to the doctor about her not sleeping well. He should be able to give her something. I sleep better now that I'm on Amitriptyline, I take it about 2 hours before bedtime. I no longer lay in bed for hours before sleep and then have sleep disturbances throughout the night. I can fall asleep and stay asleep now.

I sure hope the NS gives you some positive answers. Don't leave without feeling that you got answers and you understand them. Remember your Pen/Paper!

~Lori D