I am new here

[Guest guest]

Hello All,

I am so glad I found this on the internet, this might be long and I

apologize in advance. My 12 year old daughter was diagnosed with Chiari

Type 1 four years ago. She has many other problems, which until the

last three days when I have spent most of my time on here reading did

not know that they could be related to Chiari. First let me give you

her problems, born with severe hypotonia,PDA of the heart, psyedo

Obstruction of the bowels, short statue syndom, migrane

headaches,staring seizures,reflux of the esphogus,reflux of the

bladder, vision(which gets worse every year), chronic muscle pain,

walks with a gait, can't run, asthma,mentally retarded, suffers from

depression(currently on prozac),from test the doctors have run she will

not start her period before she turns 18, still do not know if she will

be able to have children. In my opionion (I know this sounds terrible),

I hope not, I don't think I can watch her be that at risk.She also

suffers from a severe speech problem. Currently she is taking meds to

control the migraines, without it she wakes up in the middle of the

night crying and shaking, she walks like she is 80 yrs old. In Nov. 99

the doctors took her off her seizure medicine, because she was doing

well, since then her staring is back worse then before, but another

problem has surfaced, she is now stuttering,(her speech therapist says

she is blocking) and she is complaining more of headaches, neck pain,

and nausea. She is going into the hospital in the next 2 weeks for a

video EEG to determine if she should go back on her seizure medicine.

When I ask the neurologist if this had anything to do with the

Chiari(which I was told was no big thing when she was diagnosed) he

told me there was no way any of this was related and don't worry. They

think it is emotional because her father and I separated last year.

Again sorry this is so long. My question is, I know I need a second

opionion( actually third) but where should I go? She is currently

under care at Childrens Hospital of Philadelphia, and she was seen at

St. Hospital for Children in Philadelphia two yrs ago, and

they agreed with Children's. She also has a cyrst in her brain. I am

scared that the doctors are ignoring something serious and any help

would be greatly appreciated.

Thanks,