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[quote=Anonymous][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]

The lead researcher was fabulous and kind; she spent time with DS and wanted him in the study.  Then two other doctors did some interviews where I was not present.  The younger doctor then told us he was too chronic to be in the study.  I understand that since then they have actually since made clear in writing their strong preference for kids who have experienced symptoms in the last six months.  So I understand that.

But then she gratuitously went on about how many poor children need their help and how we didn't seem to fit in that category and really didn't need the free care NIH provided.  I remember wanting to ask her how old her car was so I could tell her mine was 14 years old.  There was a social worker present who said nothing but sort of had her mouth agape during this conversation.  She was kind to us afterward, but couldn't help with alternative sources of treatment.  It was so unexpected, and I simply wasn't quick on my feet.  It probably didn't help that after years of such difficult symptoms and ensuing social isolation from pretty much the rest of the world outside of work, the view that nothing would ever get better for my poor child was pretty ingrained.  It was just so crushing to have the first ray of hope to come along in years be squashed and then to be accused of trying to game the system for free care on top was just too much.  At that point, we would have given up our life savings for care.

This was some years ago.  I ended up writing a letter to the doctor who was so helpful in getting together the paperwork and referrals to make it to the interview stage with NIH.  Perhaps I should have contacted the lead researcher instead. [/quote]

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