Parent of Ped.ACM Needing Opinions

[Guest guest]

I am hoping someone will be able to help me to understand what our daughter

is experiencing. Our daughter, , is 6 years old and was diagnosed with

ACM 1 back in 1996.

To give you a brief background, she has had two decompression surgeries and

one surgery to repair a CSF leak. Her symptoms never went away completely.

She has continued to have problems that seem to come and go. Within the last

month, the head pains she gets seem to be gradually getting worse.

My question tonight is, for the past two nights has complained of not

being able to get any air. She said it feels like she's having a hard time

breathing. I don't notice that she looks like she is having any problem

breathing. Has anyone else experienced this? It seems like it bothers her

worse when she lies down.

In the last couple of months she also keeps telling us that she feels

something in her eyes and then at a different time, she has been complaining

about her ears feeling blocked up. I did have her eyes examined yesterday

and the doctor didn't find any pressure on the retinas. Does anyone else

experience this???

Can anyone help me to understand what she is experiencing? Any thoughts

about this would be very much appreciated.

('s Mom)