tag:blogger.com,1999:blog-27546414.post8512728332987953140..comments2024-03-24T09:23:09.202-07:00Comments on Outrageous Fortune: An anticlimax to #thepatientexperience ...thank goodness!Shastahttp://www.blogger.com/profile/01013565031179610593noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-27546414.post-1520673685897127232011-08-29T04:51:26.416-07:002011-08-29T04:51:26.416-07:00So good to hear that the wait wasn't too bad! ...So good to hear that the wait wasn't too bad! I know your frustration with the specialists. When I was diagnosed with my disease the specialists were telling me to do everything I was doing on my own! Hang in there and just try to have extreme patience!Rosshttps://www.blogger.com/profile/14665375709991970613noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-67366828743972222452011-08-27T19:15:08.106-07:002011-08-27T19:15:08.106-07:00MOH: Yup. Yay, us! But still, it seems like the pe...MOH: Yup. Yay, us! But still, it seems like the people with LOADS of training and experience with CP (and to whom we are spending THOUSANDS) should be the ones coming up with a plan instead of me, who barely knew what the words meant a year ago. What about the kids whose parents don't have the time, energy or education level??<br /><br />Thanks Jenny and Erin! <br /><br />Amy: The lawsuit thing drives me nuts. It's probably also why they don't tell you about things like Feldenkrais (which we've found enormously helpful) even when they know what that is. There ought to be a difference between an official Doctor Recommendation and "hey, I haven't checked out the research, but some other patients have found luck with this, maybe you should try it."Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-64058974176470073342011-08-27T12:12:42.256-07:002011-08-27T12:12:42.256-07:00I wonder too if they just shut it and recommend ju...I wonder too if they just shut it and recommend just the "basic" b/c they're afraid of being sued. If they say, "you're child will never walk", and then five years later the kid does, the parents will say "if we'd done things sooner he'd have walked sooner, we're suing!" Or if they say "you're child will walk" and then they don't, people will sue for that too.<br /><br />Or perhaps I'm hyper sensitive to the lawsuit equation, since there were apparently nurses in the NICU who did NOT want to work with Julia & Gabrielle because hubby and I are lawyers. We always joked about it, and then one day the nurse coordinating our primary team confirmed it. Our OT said too that there are therapists who don't want to work with attorney's kids for the same reason.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-27546414.post-35267507198986429192011-08-26T14:15:54.404-07:002011-08-26T14:15:54.404-07:00I'm sure its frustrating to see "speciali...I'm sure its frustrating to see "specialists" that have gone to extensive schooling and have extensive experience tell you what you already know. Maybe no news is good news, I don't know. I am sending a huge high 5 for finding time to do your own research and therapy with two little guys to care for :) Good job Mom!!Anonymoushttps://www.blogger.com/profile/01764243092447308361noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-55949625465937875792011-08-25T20:01:15.413-07:002011-08-25T20:01:15.413-07:00I am so glad your day turned out better than expec...I am so glad your day turned out better than expected!Jennyhttps://www.blogger.com/profile/16213590209738598377noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-87117378677370208912011-08-25T15:46:15.373-07:002011-08-25T15:46:15.373-07:00Sounds like the very same comments my daughter get...Sounds like the very same comments my daughter gets from the neurologist, physical, occupational and speech therapists. We too were expecting a more aggressive planned treatment. Instead therapy 3-4 times a month seems to be the norm. Lucky for the kids they have great moms that go above and beyond what the doctors say ....MOHnoreply@blogger.comtag:blogger.com,1999:blog-27546414.post-29042416115664275762011-08-25T15:27:31.072-07:002011-08-25T15:27:31.072-07:00Yes, I agree it's good that we are on the same...Yes, I agree it's good that we are on the same page. I certainly would have been upset if they said something I was totally unprepared for. <br />I dunno, maybe that's why they don't say anything. But then what's the point of going to them?Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-2249044232387747732011-08-25T15:03:54.115-07:002011-08-25T15:03:54.115-07:00Having them not tell you anything you didn't a...Having them not tell you anything you didn't already know I think is good. It's sometimes reassuring, to me anyway, to be able to say "yup, I have already surmised that about my child, so it's good to see we are both correctly assessing her abilities."<br /><br />I wonder if the reason they don't advise any special type of therapy other than traditional PT or OT is because they know, in the end, parents are going to do what they want and that, except for controversial ones - like maybe shock therapy - none of it is going to *hurt* the kids physically. And, maybe they just have an understanding that *you* know your child best, so deciding what alternative therapies to choose from is all on you, since there's no one size fits all approach.Anonymousnoreply@blogger.com