Originally Posted by Minnie
My daughter was told to take it because of the side effect of some of the drugs they had her on, to start with. Bone thinning? Don't quote me on that - I can't remember, it's been a long time - I suppose if I dug around in my docs on my laptop, I'd find it - I kept pretty detailed notes about everything to do with her treatment when she was in 'crisis.' They also had her taking Calcium at that time, because of the same drugs.
We continue to take it, her included, because all of us came up as deficient when tested. We take it year round because most of us are very fair skinned, and so we don't spend a lot of time in the sun without being lathered up. I feel like I get sunburn from the oven lightbulb, lol, so I'm pretty careful about the sun. I've already had one suspicious mole removed (thankfully, it turned out to be nothing) so I'm careful.
The doctors at Children's were very upset with us when my daughter ended up back in there fall of 2011 because we refused their efforts to just throw drugs at her when they didn't know what was going on. One of these drugs was one she was on in the spring, when they thought she had a wretched nerve problem in her foot, what they thought was the result of the trauma to said nerve from her accident.
During that course of treatment, we perceived no benefit to what was going on with her and so with our GP's help weaned her off of it - in fact, the effect on her was entirely negative. IIRC from some reading a while ago, the drugs they use to treat things like RSD/CRPS (Neurontin and the like) and other nerve disorders, helps very little or not at all. That's not to say there aren't patients who do find it helps, but they are learning for the majority, there are no benefits.
They tried to say it was the RSD and through our extensive reading about the subject, we felt that it was incorrect - her symptoms just didn't match up, and they only arrived at the diagnosis initially, with a 2 minute observation and no other testing. They wanted to throw Gabapentin/Neurontin at her again, a drug that made her shake like she had Parkinson's and caused such gastrointestinal distress they thought she had C-Diff. So when she ended back up in hospital, they wanted to throw that at her. When we insisted that they do some major testing instead, insisted that perhaps they get Rheumatology involved, they were VERY pissy with us. Sorry no. You are actually going to get your damn hands dirty on this one, and figure this the feck out, not just throw multiple drugs at it and hope that one might work but hey, who the feck cares about the incredibly bad side effects you've just subjected my kid to?
/rant over. Sorry.
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