Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Hi-- Mom of Emmet, 18, here. I posted last fall that Emmet was recently found to be re-tethered (since 2001, apparently), additionally, has chronic kidney disease and high blood pressure (along with neuro B and . While we are juggling this new level of involvement with the medical establishment, I have a question about TC-related pain. In the last couple of months every so often he complains that he aches all over, has a stuffy head, but no cold symptoms, no fever. He says this does inhibit his mobility somewhat, in other words, if he could just sit or lie down that's what he'd prefer. And he is not the type to ask to stay home from school to 'play hooky.' He's now on blood pressure meds, vitamins A, C, and D, and rotates weekly among three different antibiotics as a prophylactic. (He will be undergoing bladder augmentation surgery this summer--anybody have experience with this? And he will most likely need kidney transplant in unforeseeable future). Now that Emmet's reported this a few times, I today am contacting his pediatrician, urologist, nephrologist and neurosurgeon to see if any of them have ideas what to do about this other than ply him with tylenol. But to the TCS community I wanted to ask: when one speaks of pain, generally how does it manifest itself? Is it just a general ache all over the body, specific pangs along certain parts of the body, excruciating to the point of immobility, a bearable but uncomfortable sensation--or all of this? Now that we know he is re-tethered I am beginning to fear that this, being one of the more common symptoms of TC, is behind it all. Thanks. I realize that describing pain can be akin to describing joy, shock, wonder, sadness--those things that are hard to find words for. We've seen two neurosurgeons in the last couple of months and they both said they will not operate to de-tether if his most obvious symptom is the deteriorated bladder which will be addressed thru blad aug surgery. Yleana in Boston [p.s. moderator: I tried to post by clicking on 'create new topic' on digest but it would not let me when it took me to the internet web page. hope this works. ] Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.