peglem Posted May 18, 2010 Report Posted May 18, 2010 Had an appointment today...he wanted to document improvements we've seen, he said to show medical validation for the treatments she is getting, in case he or we are accused of just experimenting or munchausen's or something of that nature. My hub asked him if there have been accusations... He said, "Let's just say that I've had to go to bat for Peggy (me) a few times. But, I explained to them what was going on and don't worry, those doctors are no longer involved in her care." Huh? All I did was seek care for my child. I'm a little taken aback by this...but so glad we have this doctor helping us. Do I need to be careful? Not sure how to navigate that! I've also been concerned that my daughter will have to find a new doctor when she turns 18 (2&1/2 years). He said he'll see if he can follow her until age 21. He's done this with some of his special needs patients, and he really wants to see how this all plays out. Such a load off my mind- bought another 3 years! We're going to try the rifampin/augmenten combo again to see if we can get her back to pre low dose IVIG. Somebody get this man a halo! .
saidie10 Posted May 18, 2010 Report Posted May 18, 2010 Had an appointment today...he wanted to document improvements we've seen, he said to show medical validation for the treatments she is getting, in case he or we are accused of just experimenting or munchausen's or something of that nature. My hub asked him if there have been accusations... He said, "Let's just say that I've had to go to bat for Peggy (me) a few times. But, I explained to them what was going on and don't worry, those doctors are no longer involved in her care." Huh? All I did was seek care for my child. I'm a little taken aback by this...but so glad we have this doctor helping us. Do I need to be careful? Not sure how to navigate that!I've also been concerned that my daughter will have to find a new doctor when she turns 18 (2&1/2 years). He said he'll see if he can follow her until age 21. He's done this with some of his special needs patients, and he really wants to see how this all plays out. Such a load off my mind- bought another 3 years! We're going to try the rifampin/augmenten combo again to see if we can get her back to pre low dose IVIG. Somebody get this man a halo! So good you have such a great doctor on board! Sounds like he really cares and is being very thorough and thoughtful in his treatment of your daughter!
kimballot Posted May 18, 2010 Report Posted May 18, 2010 Glad you have a pediatrician who is in your corner! I do worry about the whole Munchausen's idea. When my son was younger I wondered if I had it without realizing it- Since I kept parading him from one doctor to another saying "he has sinus infections all the time and his behavior is completely unmanageable when he is not on the strongest of antibiotics - is there a relationship?". I later decided that even if I wanted to I could not make the sinus infections that kept showing up on CT scans, and now I know I cannot create changes we are seeing in bloodwork. I think it IS SO important that we all document all we can. Document behavior, notes from teachers, comments from coaches... the whole thing no matter how painful it is. You never know when a piece of information will be important in the future. And, Peg, if anyone ever questions your parenting, send them my way. I'll have a talk with them! I have never met you but I certainly have a healthy respect for all you do!
Mary M Posted May 18, 2010 Report Posted May 18, 2010 As if you don't have enough to worry about...thank goodness your ped is on your side even though he brought up some scary issues.
Phasmid Posted May 19, 2010 Report Posted May 19, 2010 I hope everyone realizes that this is the first thing that physicians assume (not just wonder about) is Munchausen by Proxy Syndrome. I know that our pediatrician thinks this. A friend of mine was accused of this and had CPS at their door, at the school, and threatened to take the children away from them. So, documentation is really useful here.
peglem Posted May 19, 2010 Author Report Posted May 19, 2010 Y'know, what we've worried about most is that, because she beats herself up pretty badly and has lots of bruises all the time, is that we'd be investigated for child abuse. Never occurred to me that it would come from seeking medical care. We have not been actually reported and investigated- but only because our pediatrician is a man of reason and humility. I pray for our families daily, but also for their physicians!
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