Tuesday, February 09, 2010

"She's too sick and I'm not qualified to treat her!"

Things have been really difficult for my oldest lately. She's developed some sort of movement disorder, which really distresses her. Involuntary arm and leg movements. Is it a side effect of her meds? We don't know. A trip to her doc last week yielded a new drug to try because she happened to have some samples on hand. Okeee-dokeee then. The new drug (B had a total of four doses before we refused to give her any more) sent her, like clockwork, into the blackest pit of depression and despair-with-a-death-wish that I've ever seen her in. She's never ever been this bad. We took ehr off the new medication and back on the old and tried to call her doctor on Sunday. Result: Doctor was unavailable on the weekend. Not reachable by phone. Okay, fine. So we already had a new doctor appointment lined up for today. We can hang on, right?

The New Doctor Report:

We went and saw a very nice and very honest doctor today. It was an expensive hour, but worth it, I hope. The upshot: see above. The new not-our-doctor says B needs someone who will see her as part of a team approach. She needs the best of the best, a team of experts. She is very very sick. (We have been very unhappy with her current psychiatrist for a myriad of reasons for a while now and have felt stuck, stuck, stuck for another myriad of reasons....hence the search for a new doctor.)

Unfortunately, Early Onset Schizophrenia is very rare and there are very few Child Psychiatrists in practice, making the problem of finding one who is qualified to treat our daughter even more challenging.

I appreciated the time and the honesty (well, I guess it wasn't really a favor since I could hear the two hundred seventy-five dollars draining rapidly out of our health savings account thingy even as we spoke. But oh well. It was nice to be heard.) And the nice "not our doctor" is going to make some calls to her personal friend doctor at the top notch place I tried to get B into last week (too full, can't see her, not enough doctors they said) and see if some string pulling won't yield better results. We shall see.

Deep breath. God is in control.

And the movement disorder that B is manifesting is NOT manifesting like Tardive Dyskinesia...the "not our doctor" thinks it's something else and wants me to find a neurologist. Yeah, I think it's time for that. Add that to my to-do list.

Deep breath. God is in control.

Now, in other news:

I made some roasted sunflower seed butter in the food processor today, which REALLY hit the "I'm craving nut butter" spot. And I'm not allergic to sunflower seeds. So, lenten yums, here I come.

And it's the most gorgeous snow outside, so the kids and I are going to "Narnia" this afternoon. Actually we are going to the Nature Center to walk in the snow covered woods, and if we are really really lucky we might spot Mr. Tumnus off between the trees somewhere. ;-) Maybe when we get back we can make hot cocoa and watch The Lion, The Witch and the Wardrobe.

Dinner tonight: Pasta alfredo with broccoli and shrimp. (and that means spaghetti squash for me and Bethany. )

6 comments:

Marigold said...

Oh boy. If I may, and for what it's worth, I'd like to add your daughter to my daily prayers. I do have a little experience in this sort of thing, and I know how much it sucks. Chin up, and take it one day at a time!

M.

Veiled Glory said...

This sounds like progress with a Dr. who might have a little spark of compassion and scientific curiosity left. Continuing to pray...

Veiled Glory said...

second thought: I wonder if there are major medical centers or Universities who specialize in treatment/study of this illness type? My mum received experimental treatments (totally unrelated disease) for free through such a program.

elizabeth said...

my continued love and prayers. I gave B's name to be prayed at the Altar this past sunday (not the first time of course) and I and others here really care about all of you. will pray for the doctor strings to be pulled!

Mimi said...

Prayers, hon. Hugs and love.

Helen said...
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