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Reply to "Tell me about medicating your child for anxiety/cod"

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[quote=Anonymous][quote]My child's side effects were in no way life threatening, but they lowered his quality of life, which already was pretty miserable owing to the constant OCD, which occurred even as he slept so there was no relief ever, to an intolerable level. Those years of my son's life were pretty grim and at times we are without any hope things would ever get better. DS was even rejected from an NIH PANDAS program because he was deemed too chronic, but that did not prevent the young doctor who delivered the news from gratuitously implying that the only reason we wanted to be part of the the NIH study was to get free medical care and they had so many other people coming to them who were poor but, no, she could not recommend anyone in the private sector who could help. She judged us to be high SES and, thus, unworthy of any publicly paid help. I was unable to return back to work that day because of the overwhelming sense of hopelessness I felt that there was no help anywhere for my DS. [/quote]

I'm appalled! :shock:   I'm someone who frequently recommends NIH studies because we've had such positive experiences with several of them (with a couple of different kids).  NEVER has research team implied that there was anything wrong with us looking for assistance via a research study.  In every single study we've been in, they had a list of providers if we needed additional assistance.  Those providers may not have been the closest to us but at least I had someone else to contact.  Not once did I ever feel anything but support and understanding from them.  How outrageous!

If you have the energy and gumption, I'd contact the lead researcher and share your feelings.  What you experienced is unacceptable - and discourages people from participating.  This isn't the kind of research where SES has an impact.  I'm sorry you experienced this and I hope it doesn't turn you off from other studies.  [/quote]

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