Audrey very restless

[Guest guest]

Hi all,

Once again I am asking for some help. Last night Amie called and wanted me to come over as Audrey was having some problems. When I got there Audrey was very restless and jerky. The jerking was like her seizures, it was like she was having horrible muscle spasms over her whole body, plus she was doing a different thing with her eyes, that I can't quite explain. Her pupils were slightly dilated, and she kept rolling her eyes back like she does when she is trying to go to sleep, but then she would jerk, her eyes would open but we aren't sure if she was seeing or not. We called the doctor and he told us to give her some Klonopin but he was very reluctant to do that. He is afraid anything will affect her respiratory drive. She has been having more problems this last week with increased congestion in spite of the use of her Vest twice daily, plus more problems with reflux, her muscles are now non-existent, as they have atrophied to the point

they are not there. The Doctor told Amie last week that he feels the disease is really progressing.

I guess what I am asking of those of you that have been through this is a couple of things. One, what did you give to your children to calm them down so they weren't in distress? I told Amie last night that I think Audrey was in pain and she isn't able to tell us. Amie is afraid to give Audrey anything because fo what the Doctor said about affecting her respiratory drive but I did tell Amie they may have to make a choice between having her like she was last night and taking a chance on the meds.

I hate what this disease is doing to Audrey! She has suffered so much. When I see her like she was last night I think I am ready for her to go to heaven, but then I feel so guilty for feeling that way that I hate mayself. The thought for loosing her terrifies me but the thought of her in pain is worse.

What can we do? Any help would be greatly appreciated.

Kathy, grandma to Audrey, 3 years