Thursday, October 26, 2006

Back on the methadone

Again. I kept talking to the doctors, and they kept telling me it was colic. So, I spent a few hours doing research on the Web, and came up with a thing called the NAS score, which measures withdrawal symptoms to determine whether they are withdrawals, and if they're severe enough to need treatment. Anything over an 8 (the range is 1-18 or 20 I think) is considered withdrawals requiring treatment. 12-15 = severe. Sadie was scoring 12-16 for 8 hours straight (I did the scoring every 2 hours) Monday night.

I called the pediatrician the next day and got an appt, and called the cardiologist. I explained to the pediatrician the scoring system (she didn't have a clue). One of the items listed is diarrhea. She had the nerve to question me on whether Sadie actually had diarrhea, saying htat all newborns have loose stools. Hello. I'm not a moron. So I explained to her that when almost flourescent poo is shooting from your daughter's bottom in a liquid form day and night, it is most likely considered "explosive, liquid diarrhea." I then dug a diaper out of the trash (she had kept me waiting for 45 minutes, which is enough time for Sadie to go through two) to illustrate it. She then agreed that it would be considered explosive and liquid. (sigh)

I had also armed myself with some literature I got from the Net. I found one doctor who wrote a recently published article in Analgesics and Anesthesia concerning methodone weaning, and emailed to him explaining my situation and asking him if he'd supply the article for my personal use. He replied within hours and not only sent the article, but also sent an offer to talk to any of the physicians we were dealing with and to help with any of my questions. What a nice guy!! His article had the scoring chart in it, as well as other useful info, which I used to walk the pediatrician through what happens when there's a severe narcotic withdrawal in an infant.

In the meantime, the cardiologist got on the phone to UVA, and came up with a new wean method - it will take about 4 weeks to go through it all again. Hopefully this time won't be as bad. Most kids don't respond this way - Sadie is the minority, so there's not a lot of research to support any method for getting her from here to there. It's all guesswork, and it makes me antsy as hell.

So, we're drugging her again. There were great results within 30 minutes of her first dose. The las two nights I've gotten 6-8 hours of sleep total! I was really upset about putting her back on it, fearing she'd become less lucid, but so far, so good. She's still very alert, and I got more smiles and coos this morning than I've ever gotten in one sitting. I just hope it keeps up. I'm scared to death that the drugs will screw up her development. She's already been through so much, but she's on par with where she should be - even a little ahead of schedule. It amazes me how well she does in spite of all these medical setbacks.

It's been so nice the last two days. It's like having a normal baby. She's cried maybe 4 hours a day (mostly in evenings - she IS a bit colicky), which I can totally handle. I'd forgotten how abnormal our life was until it got a little closer to what normal should be. I've showered two days in a row! Eaten! Slept! Worked! I feel totally pampered at this point. :)

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