Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 where to start. we went to ortho and ped on wed. Caleb is now non weight bearing and in a wheelchair. They did more lab work saying since he still has sx that he still must have a high parvo level. well to make this long story short his parvo is now negative and he is still having sx so the dr's now think that the parvo may of just been a fluke well one of the dr's. So again back to the drawing board so to speak. However I listened to all of you and started asking for all office notes and labs. I am a little concerned Caleb now has " teardrops " this is in the red blood cells. And guess what I was looking over Calebs last rheumy notes and guess what in the past diagnosis states he has headache chich he had last time and also listed was poly jra unspecified and chronic. I called them to ask them if this was a mistake or why didnt we know this. They didnt know and dr passo is out of town. THis is in his permament records I would think that if it was a mistake that they would of at least double read what they were putting in his medical record. I am so confused but talking with a dr that I work with they say that poly and viruses can go hand in hand so I asked the rheumys nurse about this of course she wasnt sure she is never any help. So has anyone ever had this happen! Or are we the pioneers of a screw up. If this is correct I want my son treated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 I'm sorry you all are going through so much. I feel sad for your little boy. It must be real hard for him. I might suggest that whatever the case, you might want to insist that they start doing some water rehab on him, pain management... stuff like tha tto help him get mobile again.. diagnosis or not. The focus needs to be Quality of life diagnosis or not!! If he has JRA, the worse thing is him being non weight baring in a wheelchair as this will lead to more severe stiffness, contractures, pain and disability that is very difficult to reverse. I've seen this happen to kids and it's very very worrisome and sad so I just hope that maybe Caleb can get some nice hydrotherapy to get some movement in his body and joints for whatever is the underlying problem will eventualy be diagnoised but for now try to reverse the damage that has already happened... Issadora On Feb 9, 2008 3:03 PM, nurse0300 <nurse0300@...> wrote: > where to start. we went to ortho and ped on wed. Caleb is now non > weight bearing and in a wheelchair. They did more lab work saying > since he still has sx that he still must have a high parvo level. > well to make this long story short his parvo is now negative and he > is still having sx so the dr's now think that the parvo may of just > been a fluke well one of the dr's. So again back to the drawing > board so to speak. However I listened to all of you and started > asking for all office notes and labs. I am a little concerned Caleb > now has " teardrops " this is in the red blood cells. And guess what I > was looking over Calebs last rheumy notes and guess what in the past > diagnosis states he has headache chich he had last time and also > listed was poly jra unspecified and chronic. I called them to ask > them if this was a mistake or why didnt we know this. They didnt > know and dr passo is out of town. THis is in his permament records > I would think that if it was a mistake that they would of at least > double read what they were putting in his medical record. I am so > confused but talking with a dr that I work with they say that poly > and viruses can go hand in hand so I asked the rheumys nurse about > this of course she wasnt sure she is never any help. So has anyone > ever had this happen! Or are we the pioneers of a screw up. If this > is correct I want my son treated! > > > > -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold). my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Wow ..just read the latest post on Caleb. Can't believe you have had to go thru all of this with your poor little guy! Is he walking at all?? Man, I would be pretty ticked that they did'nt tell you what they were writing in his medical records and not treating him for it!! I am so glad you got his records. Take care and hang in there. Remember that you are his only advocate and are doing a great job. hugs, Cynde update on caleb again! where to start. we went to ortho and ped on wed. Caleb is now non weight bearing and in a wheelchair. They did more lab work saying since he still has sx that he still must have a high parvo level. well to make this long story short his parvo is now negative and he is still having sx so the dr's now think that the parvo may of just been a fluke well one of the dr's. So again back to the drawing board so to speak. However I listened to all of you and started asking for all office notes and labs. I am a little concerned Caleb now has " teardrops " this is in the red blood cells. And guess what I was looking over Calebs last rheumy notes and guess what in the past diagnosis states he has headache chich he had last time and also listed was poly jra unspecified and chronic. I called them to ask them if this was a mistake or why didnt we know this. They didnt know and dr passo is out of town. THis is in his permament records I would think that if it was a mistake that they would of at least double read what they were putting in his medical record. I am so confused but talking with a dr that I work with they say that poly and viruses can go hand in hand so I asked the rheumys nurse about this of course she wasnt sure she is never any help. So has anyone ever had this happen! Or are we the pioneers of a screw up. If this is correct I want my son treated! ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.0/1268 - Release Date: 2/9/2008 11:54 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 I have a friend who's 4 yr. old son, , was dx with this in Nov. I know it's a different direction but Caleb's symptoms sound so similar. It can have the fevers too. It's similar to JRA but attacks the muscles instead of the joints. It causes muscle pain and weakness. Here is a link: http://www.myositis.org/template/page.cfm?id=348 I am so saddened by your case. The not knowing is so hard. Did you ever find out anything about St. Jude? Sounds like it may be time to " pull out the big guns " . Sending prayers that God gives you guidence and peace. and a BIG prayer to Caleb....may he be free of all of this SOON.... -Hadley (Isabelle, 4 yrs.) > > where to start. we went to ortho and ped on wed. Caleb is now non > weight bearing and in a wheelchair. They did more lab work saying > since he still has sx that he still must have a high parvo level. > well to make this long story short his parvo is now negative and he > is still having sx so the dr's now think that the parvo may of just > been a fluke well one of the dr's. So again back to the drawing > board so to speak. However I listened to all of you and started > asking for all office notes and labs. I am a little concerned Caleb > now has " teardrops " this is in the red blood cells. And guess what I > was looking over Calebs last rheumy notes and guess what in the past > diagnosis states he has headache chich he had last time and also > listed was poly jra unspecified and chronic. I called them to ask > them if this was a mistake or why didnt we know this. They didnt > know and dr passo is out of town. THis is in his permament records > I would think that if it was a mistake that they would of at least > double read what they were putting in his medical record. I am so > confused but talking with a dr that I work with they say that poly > and viruses can go hand in hand so I asked the rheumys nurse about > this of course she wasnt sure she is never any help. So has anyone > ever had this happen! Or are we the pioneers of a screw up. If this > is correct I want my son treated! > > Quote Link to comment Share on other sites More sharing options...
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