Screaming into the ether

My daughter saw a neurologist today who told me that if we did not find out what was causing the build up of CSF in her brain there *would definitely* be brain damage, blindness and then death. He says he thinks it's her lithium which is causing it, so we saw her med doc tonight and took her off that and are trying Neurontin instead, even though her med doc says it is astonishingly rare for lithium to cause what is wrong with her. The neurologist says if Lithium is the only drug which will work to control her manic depression, then surgery and a shunt with be necessary...but it's been three months of this pressure in her brain. Not only has the vision problem remained as well as the intermittent short term memory loss and hearing deficiencies, but not her taste seems to be affected in that she says things taste differently.

Her bi-polar disease *must be controlled because without the meds, we have those rages...

The neurologist says that because it's been three months her vision deficiencies are probably permanent. Do we have time to wait and see if it's the lithium? It could be her weight, it could be connected to her menstrual cycle, it could be a different med or none at all... If the pressure continues or increases in the time it takes us to find out what is causing it, couldn't that result in further vision loss? Maybe the brain damage and blindness? On Monday I will be calling the insurance people to scream that I want her to have the shunt put in *now, to relieve the pressure which has already resulted in permanent vision impairment NOW before it gets worse, and I know I will have to really battle this with them.

I'm so tired. I wish there were someone else to hold the fort for me, to do battle for me so I could crawl under the covers and be afraid in peace, where no one could see my fear and think things are worse than they are or even as bad as they are because we are trying to be upbeat, etc. I wish there were like, maids you could hire to take over the fear for you for a while. I wish it was happening to someone else's kid. I know it sounds horrible but I would wish this on any other persons kid here to get it out of MY kid. Me, even. Not her or her sibs.

When she heard possible blindness tonight the first thing she said was 'I was going to be a doctor'...and when she was faced with losing lithium (which she is convinced is the only thing which will control her rages) she told me she would rather die than have to deal with that again. I want to get on my knees in the middle of the road and scream at someone to fix it, to help her, help me. I thought coming here tonight would provide a distraction, but even in the posting it plays in the back of my mind, like background music. Like the rain outside, the sound of the cars on the wet pavement and even behind that I hear 'death', 'brain damage', 'blindness' 'permanent vision loss' ...

I keep thinking that if only the powers that be knew what a wonderful, beautiful bright kid she is, how much potential she has, they would change their mind and let her be, you know? If they could hear her goofy jokes, see how much she loves to read...and the things she reads, medical books, dictionaries, book after book about Titanic and Anastasia surely they would see this child among all others must be above things like blindness or tribulations of any kind. That she will be such a special gift to the world she should immediately be cured and left alone...

So someone please hear me. Someone please fix this. Leave my baby alone. Let her be to go on to be the tremendous gift she will one day be to this planet...she's gone through enough already, leave her alone. I'm begging you...someone please make this go away, now, ok?