Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Jodi - Sympathetic neurologic pain is real, just not real. Does that make sense? I know it can be so hard when you KNOW Max is in pain, but no one can find the source. But recent research has gone a long way with this " disorder " or whatever you call it. People with it feel like they are going insane - they know they are in pain, but no one seems to believe them. There was a 20/20 episode or one of those shows that dedicated time to a story on the research and people. The good news is that there are inroads being made into good pain management. Good luck in helping Max find serenity and pain-free days and nights! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Okay. I am a little calmer now. I have just spoken to Dr. Harbison and I do feel better. In fact, she said that I should call her at home at any time of day or night if I get concerned. What a change in personality it was!!! The bottom line is that she feels that Max is safe. She was very concerned that he was too sick to be home and that he needed immediate medical intervention. All bloodwork, however, indicates that things are normal. She feels that his pain is real, but she does not know what to do about it. She thinks he has a " functional type of pain related to some type of sympathetic neurogenic pain. " How's that for a mouthful? Tomorrow she wants to consult with a neurologist and the pain management team. She also wants us to speak to Max's psychiatrist who prescribes the ADHD meds. She wants him off all meds right now and to start over again when we clear this up. The reassuring thing was that she really does believe this is real, but she is stumped at to why this is happening and what to do about it. I am glad she said that because I felt that after seeing her today, she was just putting us off and not taking things seriously. I still feel like screaming, however! I just don't think that any child should feel pain so badly and for so long. The good news is that the Benadryl seems to help a bit and he does sleep with it. Oh - she also wants to check on the anesthesia used for the surgery because Max keeps having nightmares and she thinks that they can be brought on by one of the meds used to put kid to sleep for surgery. So, I do feel better on one hand, but not on the other. When will this nightmare end? Jodi Quote Link to comment Share on other sites More sharing options...
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