Question for parents with ACM Children

[Guest guest]

I am wondering if any other children with ACM have experienced certain things

that my daughter seems to be having. The doctors can't seem to give us an

answer, but there has to be something causing this with her. We have been to

specialist after specialist. Her symptoms seem to be coming back again and

our pediatrician wants to send us to another specialist.

Before my daughter had ACM surgeries, her weight was under the charts. So

much so, that our pediatrician was concerned. After her surgeries, her

weight went from below the charts to off the charts in about 2 months time.

When she is eating, it is almost like the little thing inside your brain that

tells us when we are full is not working for her. She cannot seem to tell

when her stomach is full.

She has also experienced severe stomach pains that seem to come and go at

various times. This has no relation to the eating. There are times when she

has just got out of bed in the morning and not ate a thing and will start

crying to me saying her stomach hurts.

I'm just wondering how many other children have experienced this or are

experiencing this. She has had three surgeries. Two were for decompression

and one to repair a CSF leak.

Thank you in advance for any info any one can give me.

('s Mom)