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[quote=Anonymous][quote=Anonymous]From the research I did online, Complex Regional Pain Syndrome, "Younger people, children, and teenagers almost always recover, as do older adults with good circulation and nutrition." That's why there were alarms bells going off at John Hopkin's hospital in Tampa over the mother's insistence on the dosage of ketamine.

[url]https://www.ninds.nih.gov/health-information/disorders/complex-regional-pain-syndrome[/url]

I hadn't heard of this case, but I also thought Munchausen's syndrome or Munchausen's by proxy.[/quote]

As a parent of a child who has suffered from CRPS for more than five years, I would love to know the source of the statement that younger people almost always recover or how they define "recovery." As was the case with Maya, my child's "recovery" saw her go from being in a wheelchair because she was unable to bear weight on the affected limb to a return to playing sports. This was achieved through physical therapy, the use of CBT strategies, and sheer force of will on her part. While function has been mostly regained, and despite her perseverance, she still is in constant pain 24 hours per day. Managing pain during the day is the easy part; dealing with chronic pain at night is torture. I am grateful that my DD has learned to manage her significant pain, and if that is what recovery looks like for her, we have to accept it. That doesn't mean we won't try other treatments; I have researched ketamine and would support her in receiving that treatment if her pain overwhelms her in the future. However, to me, having been in the trenches, that statement in the NIH material sounds overly optimistic, lacking in nuance, and borderline dismissive.

As to Maya's mother, yes, I'm sure she was pushy and demanding, even before Maya's illness and even more so afterward. During our CRPS journey, I've definitely had some moments I am not proud of, where I went from begging for help to forcefully demanding it. I can't adequately express how torturous it is to watch your child suffer excruciating pain without answers from the medical community. I remember a period after my DD's diagnosis when I went to a therapist because I thought I might be experiencing early-onset dementia. If someone had separated me from my DD, I can't say what I would have done. The family's story is so tragic and displays a real lack of understanding of what families go through when a child has a difficult-to-understand and difficult-to-treat illness like CRPS. [/quote]

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