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[quote=Anonymous][quote=Anonymous][quote=Anonymous]I might trust a doctor who used an extreme therapy if it helped my child and freed her from pain,[/quote]

[b]Exactly. That's what makes this case so difficult. We aren't talking about a parent rejecting conventional treatment for a disease. It sounds like they tried other things that did not help. [/b]

Also, in response to the link about the family that didn't want chemo for their son, the state did not take the son away from the parents because of this disagreement about treatment.

I've posted several times in this thread offering my opinion as a parent of a child with CRPS. Unless you have been through an experience like Maya's, you can't understand the desperation a parent feels trying to help a child experiencing extreme pain. The level of stress and desperation is ratcheted up when you have to deal with uninformed healthcare providers who seem to understand nothing about your child's condition. Body parts that are affected by CRPS are extremely painful even when touched lightly. For some, even a shower or the touch of a blanket brings intense pain, so imagine how Beata felt seeing nurses put a blood pressure cuff on Maya's arm without any regard for her pain. [/quote]

There is a recording in the documentary of a doctor (immunologist I think?) saying “there is nothing I can do for you.” When you hear this from multiple doctors, you are SO relived to finally meet one who acknowledges what you’re going through, believes you, has heard of it and provides a diagnosis. Even if their treatment seems radical, you are way more inclined to trust it.

It is an incredibly lonely road when doctors don’t give you answers. This is also why it is not fair to mock people for using “Dr. Google” and trying to self help via internet. Most would GREATLY prefer not to be in that position. [/quote]

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