Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 , I sympathize with your situation. We have dealt with this same dilemma with Autumn for a long time now. The only one who is not content with " she'll get better " is the pediatrician & his hands are tied. So, we're doing the best we can with her until someone is willing to take another look at her. I hear your stress. I hope you can find some ray of sunshine in this, even though it is difficult. Have a great holiday! Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 6 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2001 Report Share Posted November 20, 2001 I hate to hear that you've hit a brick wall with 's treatment. Has the ENT who did the tubes ever commented on the possibility of PID? Macey's ENT was one of the first to suggest it after her ears and sinuses were so messed up. Seems the ped took their cues from him and tested her for it but the testing was done wrong. It took the pulmonologist to revisit the issue before we had reliable testing and a diagnosis. Quiz every single one of his specialists, see what they think. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus,colonic inertia) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 : Sorry to hear about the latest news. One thing that has been brought up about is his " bone marrow age " . That is why his doctors are reluctant to give him a firm CVID diagnosis right now. Is it possible to talk to 's oncologist to see if that may have a role of some sort in all this. We are told that 's bone marrow age is around 4 or 5. With having had a transplant (where didn't) this seems like it may be something to look into. Again, I'm sorry that you have hit the wall on this one. --mom to , dysgammaglobulinemia, leukemia-in remission, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 , I'm sorry this is so belated... I've been really behind on email, with the holidays and school craziness, so I'm just now getting to your message about Dr. Cunningham-Rundles. I'm really sorry that's not panned out the way you'd hoped. What about calling back (or sending a fax or letter) with some variation of this question: " we looked to you because we thought we were dealing with an immunologic issue, and because others we spoke with had really good experiences with you, so we assumed it would be helpful for us to contact you. Obviously, you don't believe that you can do much more for us, but our child is still sick, and we want to do what's best for him medically. If you don't think *you* are the appropriate person, who do you think might be good to turn to? " (whether that would result in identifying a specific person or a specific medical subspecialty would be determined by how you phrase the question... you could ask specifically " if there's one particular person you think could help us, please give us a name or a hospital/medical center who might help.... " or you could say something like, " We're not wedded to the idea of an immunologic cause -- we just thought that seemed like the logical next step. If that's not it, though, we will work with any physician who can help us help our child. We just need a direction to turn, because we and our doctors have exhausted everything we know of to test and try. " Or, if your physicians are willing to write a letter (not as emotional, of course, probably!), it may even have more impact... many times, (correctly or not), physicians believe that patients or families are over-reacting to a situation, and if they hear from a colleague that that doctor is stumped and needs the help of another colleague, they will often respond to that very quickly and seriously. I cannot say which would be more effective.... So, those may seem like crazy ideas, or weird thing to suggest or say, so you can just take my idea and press the " delete " button! But I don't think that it's inappropriate to ask a physician to give another option, if they do not believe they can solve the problem. Of course, they very well may say they don't know (particularly if they don't know much about the case), but I don't think it hurts to ask (and that's why a physician component to the letter might be beneficial, because it could summarize his clinical course, and what the docs have already investigated and tried, rather than her having to sift through lots of results). She may not have realized how desperate you are, and that you were turning to her because you thought you were at the end of the road already. She may feel you were looking in all directions, so there are others you'll be exploring on your own if she's not involved. That's obviously not the case.... she just has no way of knowing that. I hope that as I read more messages, I'll find out that you've received more positive news since then, and that your family had a good Thanksgiving. I hope that is feeling better, now, too, from the ear and sinus infections! Take care, RCurk@... wrote: > > I am so sad and frustrated at this point it is all I can do to not cry...... .. > She had her secretary call back and told us that there was nothing based upon > his lab work done in the past that would make her think that there was > anything else that she could do for us. So it wasn't in our best interest to > make the trip. t Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008  Yes this is something very strange and it's got me at a dead end......I don't know what to do if it's every where. Rita Re: New Show on Emergency ER (Discovery Health)>>>>>> Adam ->>> Yes, it's a re-run, but 'NEW" as far a Discovery Health programs go.>>> It was first run a couple of weeks ago, but the way Discovery Health>>> operates, they make a certain number of shows in the off-season which>>> they run continously during the next season, mingled with shows from>>> previous seasons.>>> I don't think there was going to be a 2nd story with Dr. Phil, but>>> there was supposed to be a story on the spin-off show "The Doctors".>>> I don't know what happened to that.>>> Bessie>>>>>> >>>> >>>>>> >> Is everyone aware of this new show?>>>> >>>>>> >> Here's the description: "STRING THEORY">>>> >> A woman feels a profound fatigue and sleeps up to 18 hours a>>> day.>>>> >> Soon she feels as if invisible rats are crawling over her.>>>> >> These "invisible rats" seem to leave strange sores. When the>>> woman>>>> >> puts her sores under a microscope…the mystery deepens in ways>>> she>>>> > had>>>> >> never thought possible.>>>> >> Here's the link to the schedule: http://health. discovery.>>> com/tv->>>> >> schedules/series. html?paid= 62.15335. 123677.30743. 1>>>> >> The name of the episode (#8) is "Nothing to Sneeze at", but>>> there>>>> > are>>>> >> 2 stories in it; the Morgellons story is the first of the two>>>> > shown.>>>> >>>>>> >> Next date is Nov 16th at 5 pm & Nov 16, 1:00 pm>>>> >> (60 minutes)>>>> >>>>>> >>>>>> >> Bessie>>>> >>>>>> >>>>> >>>>> Adam >>>> Rumblers C.C.>>>> www.myspace. com/irishbandido>>>>>> Adam Rumblers C.C.www.myspace.com/irishbandido Quote Link to comment Share on other sites More sharing options...
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