Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 ....have you googled the nosebleeds? Does he have lymph node swollen? It is interesting cause this is kinda how our grandaughter acts. It is a 3 hour drive to her ped rheumy and when she gets there she has been cooped up in a carseat for 3 hours and is keyed up. The rheumy doesn't see a kid that is hurting or has a fever. The time before last..she went downhill right after the appt and got her regular fever and got listless. It is frustrating. Sorry you are going thru this. Have they mentioned the malignancy thing to you again? I know a week or so ago you were asking about that. When do you get your labs back? Hang in there...sometimes the arthritis thing shows up later after the onset of the other stuff especially with systemic. Let me know what happens with the labs. Do you go get your results before the doctor tells you? I always pick up the results from the lab or the medical records. That way I keep my own file so if I change docs or get a refereral to a specialist..I have all my records. Just a thought... Hugs.Flower one rotten mom? Ok well we went to see the rheumy again today. I am just getting so upset and having alot of trouble understanding this whole thing. The dr still had jia at the top of his list but thinks that seeing hemog is a very good thing that they need to see him again, but again thinks its probably jia. Now for the rotten mom thing. I know that in the past parents have said that their kids turn off and on like a light bulb. Which they rheumy has said that he is just waiting for the labs or for calebs joints to show definate arthritis that he has had some but the kind that has came and gone. Ok for this rotten mom thing. I am just taken back at our dr visits.....Caleb seems like he is having a bad day and can barley go and when we get to see the DR he acts fine. when asking him why and how things changed he says he acts like that because he is afraid that he is going to get his blood drawn and if he acts ok that hw wont have to get his blood drawn. Ok that kinda makes since but he knows that if they do not see anything that chances are they are going to draw blood anyway. the dr has made a comment about caleb being tight lipped about his sx because he knows that he dosent want the blood drawn or shots etc. Caleb just has puzzled be as far as these symptoms go. I guess i am just confused does he really feel bad does he really hurt or does he just need a little more attention. HE is adamenment that he has pain and always is consistant with this and has fevers and rashes which i know that this is definate you cant stretch or fake a fever or rash. Has anyone ever thought this about your child or his symptoms i feel awful about even suggesting such a thing i guess i am back to my denial phase. he has all sx of JIA except for the arthritis. oh please dont think i am a bad parent and please tell me that you have thought this before or am i just going nuts and my mind is wondering. when asking my mom or husband that was with caleb today as well as myself they agree something is wrong but why cant they get us a diagnosis. they took him off all meds until labs come back due to the nosebleeds. I guess i am just confused about this crazy disease. ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: 1/23/2008 10:24 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Im sure other parents and doctors have thought the child might be making the pain more of what it is and stuff like that but the big thing that always tells on kids is 'gets better whent hey are doing things they want to do " ... so it's like oh i hurt to much to do dishes but I can go play video games. Of course this is just one example and doesn't mean the child is 'faking' but it's like in general... kinda like when its time to go to school.. child has a stomach ache. Anyways.. honestly, your child's labs are probably complicated and that is why they keep doing the hemotological thing since often it is something that has to be ruled out. The fact that he doesn't have arthritis showing to me doesnt seem like such a big deal but some rheumatologists are real sticklers for this. What is he waitng for it to show on?? Like is he waiting to see hot swollen joints or changes on abone scan??? Trying to understand that statement better. Hugs Issadora On Jan 23, 2008 10:18 PM, cynde lee <blooms@...> wrote: > ....have you googled the nosebleeds? Does he have lymph node > swollen? It is interesting cause this is kinda how our grandaughter acts. It > is a 3 hour drive to her ped rheumy and when she gets there she has been > cooped up in a carseat for 3 hours and is keyed up. The rheumy doesn't see a > kid that is hurting or has a fever. The time before last..she went downhill > right after the appt and got her regular fever and got listless. It is > frustrating. Sorry you are going thru this. Have they mentioned the > malignancy thing to you again? I know a week or so ago you were asking about > that. When do you get your labs back? Hang in there...sometimes the > arthritis thing shows up later after the onset of the other stuff especially > with systemic. Let me know what happens with the labs. Do you go get your > results before the doctor tells you? I always pick up the results from the > lab or the medical records. That way I keep my own file so if I change docs > or get a refereral to a specialist..I have all my records. Just a thought... > Hugs.Flower > > one rotten mom? > > Ok well we went to see the rheumy again today. I am just getting so > upset and having alot of trouble understanding this whole thing. > The dr still had jia at the top of his list but thinks that seeing > hemog is a very good thing that they need to see him again, but > again thinks its probably jia. Now for the rotten mom thing. I > know that in the past parents have said that their kids turn off and > on like a light bulb. Which they rheumy has said that he is just > waiting for the labs or for calebs joints to show definate arthritis > that he has had some but the kind that has came and gone. Ok for > this rotten mom thing. I am just taken back at our dr > visits.....Caleb seems like he is having a bad day and can barley go > and when we get to see the DR he acts fine. when asking him why and > how things changed he says he acts like that because he is afraid > that he is going to get his blood drawn and if he acts ok that hw > wont have to get his blood drawn. Ok that kinda makes since but he > knows that if they do not see anything that chances are they are > going to draw blood anyway. the dr has made a comment about caleb > being tight lipped about his sx because he knows that he dosent want > the blood drawn or shots etc. Caleb just has puzzled be as far as > these symptoms go. I guess i am just confused does he really feel > bad does he really hurt or does he just need a little more > attention. HE is adamenment that he has pain and always is > consistant with this and has fevers and rashes which i know that > this is definate you cant stretch or fake a fever or rash. Has > anyone ever thought this about your child or his symptoms i feel > awful about even suggesting such a thing i guess i am back to my > denial phase. he has all sx of JIA except for the arthritis. oh > please dont think i am a bad parent and please tell me that you have > thought this before or am i just going nuts and my mind is > wondering. when asking my mom or husband that was with caleb today > as well as myself they agree something is wrong but why cant they > get us a diagnosis. they took him off all meds until labs come back > due to the nosebleeds. I guess i am just confused about this crazy > disease. > > ---------------------------------------------------------- > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: 1/23/2008 > 10:24 AM > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 his reply to this statement about arthritis is he wants to physically see it present for 6 weeks before he will make an official diagnosis that is see it 6 weeks consectuvily in the same joint. the thing about hemetology is we have already been there and already had all of that ruled out.and now we are going back to rule all of that out again. as far as faking well this am claeb woke up crying and asking for a shot he hates shot and blood draws he said that if a shot can make him feel better he is asking for one. now i really feel rotten. and now we have no meds to give him except tylneol whcih pretty much does nothing. poor guy i feel horrible! i guess when he feels better playing the video games he feels better because it takes his mind off of it and he is sitting still. > > > ....have you googled the nosebleeds? Does he have lymph node > > swollen? It is interesting cause this is kinda how our grandaughter acts. It > > is a 3 hour drive to her ped rheumy and when she gets there she has been > > cooped up in a carseat for 3 hours and is keyed up. The rheumy doesn't see a > > kid that is hurting or has a fever. The time before last..she went downhill > > right after the appt and got her regular fever and got listless. It is > > frustrating. Sorry you are going thru this. Have they mentioned the > > malignancy thing to you again? I know a week or so ago you were asking about > > that. When do you get your labs back? Hang in there...sometimes the > > arthritis thing shows up later after the onset of the other stuff especially > > with systemic. Let me know what happens with the labs. Do you go get your > > results before the doctor tells you? I always pick up the results from the > > lab or the medical records. That way I keep my own file so if I change docs > > or get a refereral to a specialist..I have all my records. Just a thought... > > Hugs.Flower > > > > one rotten mom? > > > > Ok well we went to see the rheumy again today. I am just getting so > > upset and having alot of trouble understanding this whole thing. > > The dr still had jia at the top of his list but thinks that seeing > > hemog is a very good thing that they need to see him again, but > > again thinks its probably jia. Now for the rotten mom thing. I > > know that in the past parents have said that their kids turn off and > > on like a light bulb. Which they rheumy has said that he is just > > waiting for the labs or for calebs joints to show definate arthritis > > that he has had some but the kind that has came and gone. Ok for > > this rotten mom thing. I am just taken back at our dr > > visits.....Caleb seems like he is having a bad day and can barley go > > and when we get to see the DR he acts fine. when asking him why and > > how things changed he says he acts like that because he is afraid > > that he is going to get his blood drawn and if he acts ok that hw > > wont have to get his blood drawn. Ok that kinda makes since but he > > knows that if they do not see anything that chances are they are > > going to draw blood anyway. the dr has made a comment about caleb > > being tight lipped about his sx because he knows that he dosent want > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > these symptoms go. I guess i am just confused does he really feel > > bad does he really hurt or does he just need a little more > > attention. HE is adamenment that he has pain and always is > > consistant with this and has fevers and rashes which i know that > > this is definate you cant stretch or fake a fever or rash. Has > > anyone ever thought this about your child or his symptoms i feel > > awful about even suggesting such a thing i guess i am back to my > > denial phase. he has all sx of JIA except for the arthritis. oh > > please dont think i am a bad parent and please tell me that you have > > thought this before or am i just going nuts and my mind is > > wondering. when asking my mom or husband that was with caleb today > > as well as myself they agree something is wrong but why cant they > > get us a diagnosis. they took him off all meds until labs come back > > due to the nosebleeds. I guess i am just confused about this crazy > > disease. > > > > ---------------------------------------------------------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: 1/23/2008 > > 10:24 AM > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Is there any way to get a 2nd opinion from another rheumy (peds) elsewhere? I can't rememeber for sure but as I recall, one doesn't have to have a joint showing arthritis for 6 weeks consecutiviely... yes, the primary symptoms should be present for at least 6 weeks but Arthritis present? It just seems so odd.... i would have to look at my Manual on Rheumatic diseases on this one... lol.. but it just seems like undue torture... Hugs Issadora On Jan 24, 2008 4:32 AM, nurse0300 <nurse0300@...> wrote: > his reply to this statement about arthritis is he wants to > physically see it present for 6 weeks before he will make an > official diagnosis that is see it 6 weeks consectuvily in the same > joint. the thing about hemetology is we have already been there and > already had all of that ruled out.and now we are going back to rule > all of that out again. as far as faking well this am claeb woke up > crying and asking for a shot he hates shot and blood draws he said > that if a shot can make him feel better he is asking for one. now i > really feel rotten. and now we have no meds to give him except > tylneol whcih pretty much does nothing. poor guy i feel horrible! > i guess when he feels better playing the video games he feels > better because it takes his mind off of it and he is sitting still. > > > > > > > ....have you googled the nosebleeds? Does he have lymph > node > > > swollen? It is interesting cause this is kinda how our > grandaughter acts. It > > > is a 3 hour drive to her ped rheumy and when she gets there she > has been > > > cooped up in a carseat for 3 hours and is keyed up. The rheumy > doesn't see a > > > kid that is hurting or has a fever. The time before last..she > went downhill > > > right after the appt and got her regular fever and got listless. > It is > > > frustrating. Sorry you are going thru this. Have they mentioned > the > > > malignancy thing to you again? I know a week or so ago you were > asking about > > > that. When do you get your labs back? Hang in there...sometimes > the > > > arthritis thing shows up later after the onset of the other > stuff especially > > > with systemic. Let me know what happens with the labs. Do you go > get your > > > results before the doctor tells you? I always pick up the > results from the > > > lab or the medical records. That way I keep my own file so if I > change docs > > > or get a refereral to a specialist..I have all my records. Just > a thought... > > > Hugs.Flower > > > > > > one rotten mom? > > > > > > Ok well we went to see the rheumy again today. I am just getting > so > > > upset and having alot of trouble understanding this whole thing. > > > The dr still had jia at the top of his list but thinks that > seeing > > > hemog is a very good thing that they need to see him again, but > > > again thinks its probably jia. Now for the rotten mom thing. I > > > know that in the past parents have said that their kids turn off > and > > > on like a light bulb. Which they rheumy has said that he is just > > > waiting for the labs or for calebs joints to show definate > arthritis > > > that he has had some but the kind that has came and gone. Ok for > > > this rotten mom thing. I am just taken back at our dr > > > visits.....Caleb seems like he is having a bad day and can > barley go > > > and when we get to see the DR he acts fine. when asking him why > and > > > how things changed he says he acts like that because he is afraid > > > that he is going to get his blood drawn and if he acts ok that hw > > > wont have to get his blood drawn. Ok that kinda makes since but > he > > > knows that if they do not see anything that chances are they are > > > going to draw blood anyway. the dr has made a comment about caleb > > > being tight lipped about his sx because he knows that he dosent > want > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > these symptoms go. I guess i am just confused does he really feel > > > bad does he really hurt or does he just need a little more > > > attention. HE is adamenment that he has pain and always is > > > consistant with this and has fevers and rashes which i know that > > > this is definate you cant stretch or fake a fever or rash. Has > > > anyone ever thought this about your child or his symptoms i feel > > > awful about even suggesting such a thing i guess i am back to my > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > please dont think i am a bad parent and please tell me that you > have > > > thought this before or am i just going nuts and my mind is > > > wondering. when asking my mom or husband that was with caleb > today > > > as well as myself they agree something is wrong but why cant they > > > get us a diagnosis. they took him off all meds until labs come > back > > > due to the nosebleeds. I guess i am just confused about this > crazy > > > disease. > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > 1/23/2008 > > > 10:24 AM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 after our visit yesterday he really kept repeating i think seeing heme/oncology is the best thing for you right now he kept like trying to tell us something then stopped and said that is better said by hemetology its their area of speciality ot sure what to think about that. I am glad that other kids are the same as far as feeling ok when they are there its over 1 hour drive for us so i hear you with the by the time we get there he is keyed up that is exactly what happens. at least we are not the only ones so they are still thinking a malignancy until we have it ruled out again on monday. we had more labs done yesterday. the other labs were ok a little off and his cancer marker went up 100 points again...they think this might be due to his diarrhea last week... > > ....have you googled the nosebleeds? Does he have lymph node swollen? It is interesting cause this is kinda how our grandaughter acts. It is a 3 hour drive to her ped rheumy and when she gets there she has been cooped up in a carseat for 3 hours and is keyed up. The rheumy doesn't see a kid that is hurting or has a fever. The time before last..she went downhill right after the appt and got her regular fever and got listless. It is frustrating. Sorry you are going thru this. Have they mentioned the malignancy thing to you again? I know a week or so ago you were asking about that. When do you get your labs back? Hang in there...sometimes the arthritis thing shows up later after the onset of the other stuff especially with systemic. Let me know what happens with the labs. Do you go get your results before the doctor tells you? I always pick up the results from the lab or the medical records. That way I keep my own file so if I change docs or get a refereral to a specialist..I have all my records. Just a thought... > Hugs.Flower > one rotten mom? > > > Ok well we went to see the rheumy again today. I am just getting so > upset and having alot of trouble understanding this whole thing. > The dr still had jia at the top of his list but thinks that seeing > hemog is a very good thing that they need to see him again, but > again thinks its probably jia. Now for the rotten mom thing. I > know that in the past parents have said that their kids turn off and > on like a light bulb. Which they rheumy has said that he is just > waiting for the labs or for calebs joints to show definate arthritis > that he has had some but the kind that has came and gone. Ok for > this rotten mom thing. I am just taken back at our dr > visits.....Caleb seems like he is having a bad day and can barley go > and when we get to see the DR he acts fine. when asking him why and > how things changed he says he acts like that because he is afraid > that he is going to get his blood drawn and if he acts ok that hw > wont have to get his blood drawn. Ok that kinda makes since but he > knows that if they do not see anything that chances are they are > going to draw blood anyway. the dr has made a comment about caleb > being tight lipped about his sx because he knows that he dosent want > the blood drawn or shots etc. Caleb just has puzzled be as far as > these symptoms go. I guess i am just confused does he really feel > bad does he really hurt or does he just need a little more > attention. HE is adamenment that he has pain and always is > consistant with this and has fevers and rashes which i know that > this is definate you cant stretch or fake a fever or rash. Has > anyone ever thought this about your child or his symptoms i feel > awful about even suggesting such a thing i guess i am back to my > denial phase. he has all sx of JIA except for the arthritis. oh > please dont think i am a bad parent and please tell me that you have > thought this before or am i just going nuts and my mind is > wondering. when asking my mom or husband that was with caleb today > as well as myself they agree something is wrong but why cant they > get us a diagnosis. they took him off all meds until labs come back > due to the nosebleeds. I guess i am just confused about this crazy > disease. > > > > > > > ------------------------------------------------------------------- ----------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: 1/23/2008 10:24 AM > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 oh yeh and re. video games... i was just trying to come up with some examples is all. I did read a study recently that said video games were great for pain management!! I was happy to read that as I enjoy them and they also help distract me from pain. I was just trying to make the point that is claimed that when kids are just saying they are in pain for attention, it ussualy shows up as an obvious excuse when one can see they pick and choose to have pain only during activities they dont wan tto do versus ones they want to do. Izzie On Jan 24, 2008 4:32 AM, nurse0300 <nurse0300@...> wrote: > his reply to this statement about arthritis is he wants to > physically see it present for 6 weeks before he will make an > official diagnosis that is see it 6 weeks consectuvily in the same > joint. the thing about hemetology is we have already been there and > already had all of that ruled out.and now we are going back to rule > all of that out again. as far as faking well this am claeb woke up > crying and asking for a shot he hates shot and blood draws he said > that if a shot can make him feel better he is asking for one. now i > really feel rotten. and now we have no meds to give him except > tylneol whcih pretty much does nothing. poor guy i feel horrible! > i guess when he feels better playing the video games he feels > better because it takes his mind off of it and he is sitting still. > > > > > > > > ....have you googled the nosebleeds? Does he have lymph > node > > > swollen? It is interesting cause this is kinda how our > grandaughter acts. It > > > is a 3 hour drive to her ped rheumy and when she gets there she > has been > > > cooped up in a carseat for 3 hours and is keyed up. The rheumy > doesn't see a > > > kid that is hurting or has a fever. The time before last..she > went downhill > > > right after the appt and got her regular fever and got listless. > It is > > > frustrating. Sorry you are going thru this. Have they mentioned > the > > > malignancy thing to you again? I know a week or so ago you were > asking about > > > that. When do you get your labs back? Hang in there...sometimes > the > > > arthritis thing shows up later after the onset of the other > stuff especially > > > with systemic. Let me know what happens with the labs. Do you go > get your > > > results before the doctor tells you? I always pick up the > results from the > > > lab or the medical records. That way I keep my own file so if I > change docs > > > or get a refereral to a specialist..I have all my records. Just > a thought... > > > Hugs.Flower > > > > > > one rotten mom? > > > > > > Ok well we went to see the rheumy again today. I am just getting > so > > > upset and having alot of trouble understanding this whole thing. > > > The dr still had jia at the top of his list but thinks that > seeing > > > hemog is a very good thing that they need to see him again, but > > > again thinks its probably jia. Now for the rotten mom thing. I > > > know that in the past parents have said that their kids turn off > and > > > on like a light bulb. Which they rheumy has said that he is just > > > waiting for the labs or for calebs joints to show definate > arthritis > > > that he has had some but the kind that has came and gone. Ok for > > > this rotten mom thing. I am just taken back at our dr > > > visits.....Caleb seems like he is having a bad day and can > barley go > > > and when we get to see the DR he acts fine. when asking him why > and > > > how things changed he says he acts like that because he is afraid > > > that he is going to get his blood drawn and if he acts ok that hw > > > wont have to get his blood drawn. Ok that kinda makes since but > he > > > knows that if they do not see anything that chances are they are > > > going to draw blood anyway. the dr has made a comment about caleb > > > being tight lipped about his sx because he knows that he dosent > want > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > these symptoms go. I guess i am just confused does he really feel > > > bad does he really hurt or does he just need a little more > > > attention. HE is adamenment that he has pain and always is > > > consistant with this and has fevers and rashes which i know that > > > this is definate you cant stretch or fake a fever or rash. Has > > > anyone ever thought this about your child or his symptoms i feel > > > awful about even suggesting such a thing i guess i am back to my > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > please dont think i am a bad parent and please tell me that you > have > > > thought this before or am i just going nuts and my mind is > > > wondering. when asking my mom or husband that was with caleb > today > > > as well as myself they agree something is wrong but why cant they > > > get us a diagnosis. they took him off all meds until labs come > back > > > due to the nosebleeds. I guess i am just confused about this > crazy > > > disease. > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > 1/23/2008 > > > 10:24 AM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 that was my line of thinking as well he has been sick for almost 15 weeks now that is long enough. Issadora <FlyfreeIzzie@...> wrote: Is there any way to get a 2nd opinion from another rheumy (peds) elsewhere? I can't rememeber for sure but as I recall, one doesn't have to have a joint showing arthritis for 6 weeks consecutiviely... yes, the primary symptoms should be present for at least 6 weeks but Arthritis present? It just seems so odd.... i would have to look at my Manual on Rheumatic diseases on this one... lol.. but it just seems like undue torture... Hugs Issadora On Jan 24, 2008 4:32 AM, nurse0300 <nurse0300@...> wrote: > his reply to this statement about arthritis is he wants to > physically see it present for 6 weeks before he will make an > official diagnosis that is see it 6 weeks consectuvily in the same > joint. the thing about hemetology is we have already been there and > already had all of that ruled out.and now we are going back to rule > all of that out again. as far as faking well this am claeb woke up > crying and asking for a shot he hates shot and blood draws he said > that if a shot can make him feel better he is asking for one. now i > really feel rotten. and now we have no meds to give him except > tylneol whcih pretty much does nothing. poor guy i feel horrible! > i guess when he feels better playing the video games he feels > better because it takes his mind off of it and he is sitting still. > > > > > > > ....have you googled the nosebleeds? Does he have lymph > node > > > swollen? It is interesting cause this is kinda how our > grandaughter acts. It > > > is a 3 hour drive to her ped rheumy and when she gets there she > has been > > > cooped up in a carseat for 3 hours and is keyed up. The rheumy > doesn't see a > > > kid that is hurting or has a fever. The time before last..she > went downhill > > > right after the appt and got her regular fever and got listless. > It is > > > frustrating. Sorry you are going thru this. Have they mentioned > the > > > malignancy thing to you again? I know a week or so ago you were > asking about > > > that. When do you get your labs back? Hang in there...sometimes > the > > > arthritis thing shows up later after the onset of the other > stuff especially > > > with systemic. Let me know what happens with the labs. Do you go > get your > > > results before the doctor tells you? I always pick up the > results from the > > > lab or the medical records. That way I keep my own file so if I > change docs > > > or get a refereral to a specialist..I have all my records. Just > a thought... > > > Hugs.Flower > > > > > > one rotten mom? > > > > > > Ok well we went to see the rheumy again today. I am just getting > so > > > upset and having alot of trouble understanding this whole thing. > > > The dr still had jia at the top of his list but thinks that > seeing > > > hemog is a very good thing that they need to see him again, but > > > again thinks its probably jia. Now for the rotten mom thing. I > > > know that in the past parents have said that their kids turn off > and > > > on like a light bulb. Which they rheumy has said that he is just > > > waiting for the labs or for calebs joints to show definate > arthritis > > > that he has had some but the kind that has came and gone. Ok for > > > this rotten mom thing. I am just taken back at our dr > > > visits.....Caleb seems like he is having a bad day and can > barley go > > > and when we get to see the DR he acts fine. when asking him why > and > > > how things changed he says he acts like that because he is afraid > > > that he is going to get his blood drawn and if he acts ok that hw > > > wont have to get his blood drawn. Ok that kinda makes since but > he > > > knows that if they do not see anything that chances are they are > > > going to draw blood anyway. the dr has made a comment about caleb > > > being tight lipped about his sx because he knows that he dosent > want > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > these symptoms go. I guess i am just confused does he really feel > > > bad does he really hurt or does he just need a little more > > > attention. HE is adamenment that he has pain and always is > > > consistant with this and has fevers and rashes which i know that > > > this is definate you cant stretch or fake a fever or rash. Has > > > anyone ever thought this about your child or his symptoms i feel > > > awful about even suggesting such a thing i guess i am back to my > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > please dont think i am a bad parent and please tell me that you > have > > > thought this before or am i just going nuts and my mind is > > > wondering. when asking my mom or husband that was with caleb > today > > > as well as myself they agree something is wrong but why cant they > > > get us a diagnosis. they took him off all meds until labs come > back > > > due to the nosebleeds. I guess i am just confused about this > crazy > > > disease. > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > 1/23/2008 > > > 10:24 AM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Hopefully the Hematologist can bring answers.... it's hard with some rheumatic diseases because they can look very much like types of cancer and the same vice versa.... There must be something in his labs that doesn't seem typical for JIA and so he wants to be really careful and cautious which is good abeit frustrating trying to wait and see im sure. On Jan 24, 2008 4:39 AM, nurse0300 <nurse0300@...> wrote: > after our visit yesterday he really kept repeating i think seeing > heme/oncology is the best thing for you right now he kept like > trying to tell us something then stopped and said that is better > said by hemetology its their area of speciality ot sure what to > think about that. I am glad that other kids are the same as far as > feeling ok when they are there its over 1 hour drive for us so i > hear you with the by the time we get there he is keyed up that is > exactly what happens. at least we are not the only ones so they > are still thinking a malignancy until we have it ruled out again on > monday. we had more labs done yesterday. the other labs were ok a > little off and his cancer marker went up 100 points again...they > think this might be due to his diarrhea last week... > > > > > > ....have you googled the nosebleeds? Does he have lymph > node swollen? It is interesting cause this is kinda how our > grandaughter acts. It is a 3 hour drive to her ped rheumy and when > she gets there she has been cooped up in a carseat for 3 hours and > is keyed up. The rheumy doesn't see a kid that is hurting or has a > fever. The time before last..she went downhill right after the appt > and got her regular fever and got listless. It is frustrating. Sorry > you are going thru this. Have they mentioned the malignancy thing to > you again? I know a week or so ago you were asking about that. When > do you get your labs back? Hang in there...sometimes the arthritis > thing shows up later after the onset of the other stuff especially > with systemic. Let me know what happens with the labs. Do you go get > your results before the doctor tells you? I always pick up the > results from the lab or the medical records. That way I keep my own > file so if I change docs or get a refereral to a specialist..I have > all my records. Just a thought... > > Hugs.Flower > > one rotten mom? > > > > > > Ok well we went to see the rheumy again today. I am just getting > so > > upset and having alot of trouble understanding this whole thing. > > The dr still had jia at the top of his list but thinks that > seeing > > hemog is a very good thing that they need to see him again, but > > again thinks its probably jia. Now for the rotten mom thing. I > > know that in the past parents have said that their kids turn off > and > > on like a light bulb. Which they rheumy has said that he is just > > waiting for the labs or for calebs joints to show definate > arthritis > > that he has had some but the kind that has came and gone. Ok for > > this rotten mom thing. I am just taken back at our dr > > visits.....Caleb seems like he is having a bad day and can > barley go > > and when we get to see the DR he acts fine. when asking him why > and > > how things changed he says he acts like that because he is > afraid > > that he is going to get his blood drawn and if he acts ok that > hw > > wont have to get his blood drawn. Ok that kinda makes since but > he > > knows that if they do not see anything that chances are they are > > going to draw blood anyway. the dr has made a comment about > caleb > > being tight lipped about his sx because he knows that he dosent > want > > the blood drawn or shots etc. Caleb just has puzzled be as far > as > > these symptoms go. I guess i am just confused does he really > feel > > bad does he really hurt or does he just need a little more > > attention. HE is adamenment that he has pain and always is > > consistant with this and has fevers and rashes which i know that > > this is definate you cant stretch or fake a fever or rash. Has > > anyone ever thought this about your child or his symptoms i feel > > awful about even suggesting such a thing i guess i am back to my > > denial phase. he has all sx of JIA except for the arthritis. oh > > please dont think i am a bad parent and please tell me that you > have > > thought this before or am i just going nuts and my mind is > > wondering. when asking my mom or husband that was with caleb > today > > as well as myself they agree something is wrong but why cant > they > > get us a diagnosis. they took him off all meds until labs come > back > > due to the nosebleeds. I guess i am just confused about this > crazy > > disease. > > > > > > > > > > > > > > ---------------------------------------------------------- > ----------- > > > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > 1/23/2008 10:24 AM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 his pain is all of the time or he says it is he limps all of the time he just turns on when at the rheumys i think that this is partly the rheumys fault and he has told us that himself that from the get go they laughed and goofed off at this appts and caleb thinks that is how he is to be when he is there. the rheumy when i tell him that he was just on his last leg so to speak and then is meracously better when he gets there he assures us that he believes us and this is partly his fault for goofing off from the start, but this is typical for JRA........ Issadora <FlyfreeIzzie@...> wrote: oh yeh and re. video games... i was just trying to come up with some examples is all. I did read a study recently that said video games were great for pain management!! I was happy to read that as I enjoy them and they also help distract me from pain. I was just trying to make the point that is claimed that when kids are just saying they are in pain for attention, it ussualy shows up as an obvious excuse when one can see they pick and choose to have pain only during activities they dont wan tto do versus ones they want to do. Izzie On Jan 24, 2008 4:32 AM, nurse0300 <nurse0300@...> wrote: > his reply to this statement about arthritis is he wants to > physically see it present for 6 weeks before he will make an > official diagnosis that is see it 6 weeks consectuvily in the same > joint. the thing about hemetology is we have already been there and > already had all of that ruled out.and now we are going back to rule > all of that out again. as far as faking well this am claeb woke up > crying and asking for a shot he hates shot and blood draws he said > that if a shot can make him feel better he is asking for one. now i > really feel rotten. and now we have no meds to give him except > tylneol whcih pretty much does nothing. poor guy i feel horrible! > i guess when he feels better playing the video games he feels > better because it takes his mind off of it and he is sitting still. > > > > > > > > ....have you googled the nosebleeds? Does he have lymph > node > > > swollen? It is interesting cause this is kinda how our > grandaughter acts. It > > > is a 3 hour drive to her ped rheumy and when she gets there she > has been > > > cooped up in a carseat for 3 hours and is keyed up. The rheumy > doesn't see a > > > kid that is hurting or has a fever. The time before last..she > went downhill > > > right after the appt and got her regular fever and got listless. > It is > > > frustrating. Sorry you are going thru this. Have they mentioned > the > > > malignancy thing to you again? I know a week or so ago you were > asking about > > > that. When do you get your labs back? Hang in there...sometimes > the > > > arthritis thing shows up later after the onset of the other > stuff especially > > > with systemic. Let me know what happens with the labs. Do you go > get your > > > results before the doctor tells you? I always pick up the > results from the > > > lab or the medical records. That way I keep my own file so if I > change docs > > > or get a refereral to a specialist..I have all my records. Just > a thought... > > > Hugs.Flower > > > > > > one rotten mom? > > > > > > Ok well we went to see the rheumy again today. I am just getting > so > > > upset and having alot of trouble understanding this whole thing. > > > The dr still had jia at the top of his list but thinks that > seeing > > > hemog is a very good thing that they need to see him again, but > > > again thinks its probably jia. Now for the rotten mom thing. I > > > know that in the past parents have said that their kids turn off > and > > > on like a light bulb. Which they rheumy has said that he is just > > > waiting for the labs or for calebs joints to show definate > arthritis > > > that he has had some but the kind that has came and gone. Ok for > > > this rotten mom thing. I am just taken back at our dr > > > visits.....Caleb seems like he is having a bad day and can > barley go > > > and when we get to see the DR he acts fine. when asking him why > and > > > how things changed he says he acts like that because he is afraid > > > that he is going to get his blood drawn and if he acts ok that hw > > > wont have to get his blood drawn. Ok that kinda makes since but > he > > > knows that if they do not see anything that chances are they are > > > going to draw blood anyway. the dr has made a comment about caleb > > > being tight lipped about his sx because he knows that he dosent > want > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > these symptoms go. I guess i am just confused does he really feel > > > bad does he really hurt or does he just need a little more > > > attention. HE is adamenment that he has pain and always is > > > consistant with this and has fevers and rashes which i know that > > > this is definate you cant stretch or fake a fever or rash. Has > > > anyone ever thought this about your child or his symptoms i feel > > > awful about even suggesting such a thing i guess i am back to my > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > please dont think i am a bad parent and please tell me that you > have > > > thought this before or am i just going nuts and my mind is > > > wondering. when asking my mom or husband that was with caleb > today > > > as well as myself they agree something is wrong but why cant they > > > get us a diagnosis. they took him off all meds until labs come > back > > > due to the nosebleeds. I guess i am just confused about this > crazy > > > disease. > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > 1/23/2008 > > > 10:24 AM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 I agree withh Issadora, I would seek another opinion.If we had to wait for joint pain or any of that we would still be waiting, I am sure. I am a single mom of 3 and I could no longer take it when a diagnosis couldnt be made for Jordan and we had been in and out of the hospital for over 3 months spending the majority of that time as a patient or as a guinea pig.Finally I said enough and drove 8 hours to Boston to Childrens Hospital and we went to see hematology and oncology, the said it wasnt cancer, so we went to infectious disease doctors that afternoon and they said it wasnt any of their diseases either.The following morning we walked into rheumatology and that point I was ready to drop because my 9 year old daughter was dieing in front of me and I couldnt do anything.We waited for almost an hour in a little room and Jordan was sound asleep on the exam table, which at that point was all she did,sleep. Within 5 minutes of Dr Nigrovic walking in he said she has SOJRA and what is making her so sick is the MAS. He explained to us that not any 2 cases present themselves alike.That just because she does not have the joint symptoms doesnt mean its not arthritis.She had the classic stills rash all over her body, her fever wasnt the up and down it was a constant 102 to 105.He started us on Kineret the following monday and it has worked wonders,I had my daughter back in less than 24 hours of starting the medicine.She has been on it for over 14 months now and does her own nightly injections.We still hit the bumps in the roads and get the flares but its alot better than before the dx and treatment started. Sorry to be so drawn out , what Im trying to say is go for 2nd,3rd 4th opinions til you find the doctor that makes you and your child comfortable.I still drive to Boston every 3 to 4 months for our checkups, I dont mind the drive its beautiful country. Also remember if you need to travel out of town for a doctor, check on Mc house in the area , they can help with a place to stay. a Issadora <FlyfreeIzzie@...> wrote: Is there any way to get a 2nd opinion from another rheumy (peds) elsewhere? I can't rememeber for sure but as I recall, one doesn't have to have a joint showing arthritis for 6 weeks consecutiviely... yes, the primary symptoms should be present for at least 6 weeks but Arthritis present? It just seems so odd.... i would have to look at my Manual on Rheumatic diseases on this one... lol.. but it just seems like undue torture... Hugs Issadora On Jan 24, 2008 4:32 AM, nurse0300 <nurse0300@...> wrote: > his reply to this statement about arthritis is he wants to > physically see it present for 6 weeks before he will make an > official diagnosis that is see it 6 weeks consectuvily in the same > joint. the thing about hemetology is we have already been there and > already had all of that ruled out.and now we are going back to rule > all of that out again. as far as faking well this am claeb woke up > crying and asking for a shot he hates shot and blood draws he said > that if a shot can make him feel better he is asking for one. now i > really feel rotten. and now we have no meds to give him except > tylneol whcih pretty much does nothing. poor guy i feel horrible! > i guess when he feels better playing the video games he feels > better because it takes his mind off of it and he is sitting still. > > > > > > > ....have you googled the nosebleeds? Does he have lymph > node > > > swollen? It is interesting cause this is kinda how our > grandaughter acts. It > > > is a 3 hour drive to her ped rheumy and when she gets there she > has been > > > cooped up in a carseat for 3 hours and is keyed up. The rheumy > doesn't see a > > > kid that is hurting or has a fever. The time before last..she > went downhill > > > right after the appt and got her regular fever and got listless. > It is > > > frustrating. Sorry you are going thru this. Have they mentioned > the > > > malignancy thing to you again? I know a week or so ago you were > asking about > > > that. When do you get your labs back? Hang in there...sometimes > the > > > arthritis thing shows up later after the onset of the other > stuff especially > > > with systemic. Let me know what happens with the labs. Do you go > get your > > > results before the doctor tells you? I always pick up the > results from the > > > lab or the medical records. That way I keep my own file so if I > change docs > > > or get a refereral to a specialist..I have all my records. Just > a thought... > > > Hugs.Flower > > > > > > one rotten mom? > > > > > > Ok well we went to see the rheumy again today. I am just getting > so > > > upset and having alot of trouble understanding this whole thing. > > > The dr still had jia at the top of his list but thinks that > seeing > > > hemog is a very good thing that they need to see him again, but > > > again thinks its probably jia. Now for the rotten mom thing. I > > > know that in the past parents have said that their kids turn off > and > > > on like a light bulb. Which they rheumy has said that he is just > > > waiting for the labs or for calebs joints to show definate > arthritis > > > that he has had some but the kind that has came and gone. Ok for > > > this rotten mom thing. I am just taken back at our dr > > > visits.....Caleb seems like he is having a bad day and can > barley go > > > and when we get to see the DR he acts fine. when asking him why > and > > > how things changed he says he acts like that because he is afraid > > > that he is going to get his blood drawn and if he acts ok that hw > > > wont have to get his blood drawn. Ok that kinda makes since but > he > > > knows that if they do not see anything that chances are they are > > > going to draw blood anyway. the dr has made a comment about caleb > > > being tight lipped about his sx because he knows that he dosent > want > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > these symptoms go. I guess i am just confused does he really feel > > > bad does he really hurt or does he just need a little more > > > attention. HE is adamenment that he has pain and always is > > > consistant with this and has fevers and rashes which i know that > > > this is definate you cant stretch or fake a fever or rash. Has > > > anyone ever thought this about your child or his symptoms i feel > > > awful about even suggesting such a thing i guess i am back to my > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > please dont think i am a bad parent and please tell me that you > have > > > thought this before or am i just going nuts and my mind is > > > wondering. when asking my mom or husband that was with caleb > today > > > as well as myself they agree something is wrong but why cant they > > > get us a diagnosis. they took him off all meds until labs come > back > > > due to the nosebleeds. I guess i am just confused about this > crazy > > > disease. > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > 1/23/2008 > > > 10:24 AM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 What you are seeing in Caleb is the whole " I'm fine " thing these kids go through. We have often had discussions here about how the kids are in pain, or limping or struggling, but when the dr asks how they are doing the answer is always " I'm fine " . Makes you want to tear your hair out as a parent. I know did it all the time. They have many reasons for doing it - trying to seem better than they are so they don't have to take more meds, or go through more tests, or they are so used to feeling the way they do it feels normal to them. Believe me you are not a rotten mom, nor are you crazy. We have all had that frustration. The only thing I could do was to remind he must be honest with the dr. Keep your journal and bring it with, so you can pinpoint how you observe him between visits. Getting a diagnosis can be so hard and take so long. You know something is wrong; you will keep at it until it gets figured out. Hugs, Michele ( 20, spondy) ________________________________ From: [mailto: ] On Behalf Of nurse0300 Sent: Wednesday, January 23, 2008 10:11 PM Subject: one rotten mom? Ok well we went to see the rheumy again today. I am just getting so upset and having alot of trouble understanding this whole thing. The dr still had jia at the top of his list but thinks that seeing hemog is a very good thing that they need to see him again, but again thinks its probably jia. Now for the rotten mom thing. I know that in the past parents have said that their kids turn off and on like a light bulb. Which they rheumy has said that he is just waiting for the labs or for calebs joints to show definate arthritis that he has had some but the kind that has came and gone. Ok for this rotten mom thing. I am just taken back at our dr visits.....Caleb seems like he is having a bad day and can barley go and when we get to see the DR he acts fine. when asking him why and how things changed he says he acts like that because he is afraid that he is going to get his blood drawn and if he acts ok that hw wont have to get his blood drawn. Ok that kinda makes since but he knows that if they do not see anything that chances are they are going to draw blood anyway. the dr has made a comment about caleb being tight lipped about his sx because he knows that he dosent want the blood drawn or shots etc. Caleb just has puzzled be as far as these symptoms go. I guess i am just confused does he really feel bad does he really hurt or does he just need a little more attention. HE is adamenment that he has pain and always is consistant with this and has fevers and rashes which i know that this is definate you cant stretch or fake a fever or rash. Has anyone ever thought this about your child or his symptoms i feel awful about even suggesting such a thing i guess i am back to my denial phase. he has all sx of JIA except for the arthritis. oh please dont think i am a bad parent and please tell me that you have thought this before or am i just going nuts and my mind is wondering. when asking my mom or husband that was with caleb today as well as myself they agree something is wrong but why cant they get us a diagnosis. they took him off all meds until labs come back due to the nosebleeds. I guess i am just confused about this crazy disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 i just had a thought caleb the last 3 rheumy visits he has missed school the next dat due to pain/fever/rash. the pain is terrible the next day. has anyone else noticed the same thing? its after noon here and he is still in bed and hurting. poor guy. " Tepper, Michele " <MTepper@...> wrote: What you are seeing in Caleb is the whole " I'm fine " thing these kids go through. We have often had discussions here about how the kids are in pain, or limping or struggling, but when the dr asks how they are doing the answer is always " I'm fine " . Makes you want to tear your hair out as a parent. I know did it all the time. They have many reasons for doing it - trying to seem better than they are so they don't have to take more meds, or go through more tests, or they are so used to feeling the way they do it feels normal to them. Believe me you are not a rotten mom, nor are you crazy. We have all had that frustration. The only thing I could do was to remind he must be honest with the dr. Keep your journal and bring it with, so you can pinpoint how you observe him between visits. Getting a diagnosis can be so hard and take so long. You know something is wrong; you will keep at it until it gets figured out. Hugs, Michele ( 20, spondy) ________________________________ From: [mailto: ] On Behalf Of nurse0300 Sent: Wednesday, January 23, 2008 10:11 PM Subject: one rotten mom? Ok well we went to see the rheumy again today. I am just getting so upset and having alot of trouble understanding this whole thing. The dr still had jia at the top of his list but thinks that seeing hemog is a very good thing that they need to see him again, but again thinks its probably jia. Now for the rotten mom thing. I know that in the past parents have said that their kids turn off and on like a light bulb. Which they rheumy has said that he is just waiting for the labs or for calebs joints to show definate arthritis that he has had some but the kind that has came and gone. Ok for this rotten mom thing. I am just taken back at our dr visits.....Caleb seems like he is having a bad day and can barley go and when we get to see the DR he acts fine. when asking him why and how things changed he says he acts like that because he is afraid that he is going to get his blood drawn and if he acts ok that hw wont have to get his blood drawn. Ok that kinda makes since but he knows that if they do not see anything that chances are they are going to draw blood anyway. the dr has made a comment about caleb being tight lipped about his sx because he knows that he dosent want the blood drawn or shots etc. Caleb just has puzzled be as far as these symptoms go. I guess i am just confused does he really feel bad does he really hurt or does he just need a little more attention. HE is adamenment that he has pain and always is consistant with this and has fevers and rashes which i know that this is definate you cant stretch or fake a fever or rash. Has anyone ever thought this about your child or his symptoms i feel awful about even suggesting such a thing i guess i am back to my denial phase. he has all sx of JIA except for the arthritis. oh please dont think i am a bad parent and please tell me that you have thought this before or am i just going nuts and my mind is wondering. when asking my mom or husband that was with caleb today as well as myself they agree something is wrong but why cant they get us a diagnosis. they took him off all meds until labs come back due to the nosebleeds. I guess i am just confused about this crazy disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 I prefer to think that Iam crazy...My daughter does the same thing. Some days she is good then next all hell is breaking loose. YOUR NOT A BAD MOM. This thing that our children have is horrible my only saving grace is that her symptoms come out around other people, not just me. In the begining it was only me. My family thought that I was making a mountain out of a mole hill, until she had a flare around them. Then they saw first hand what we were dealing with. I document everything for the rheumy.Pictures of the rashes, logs of fevers rashes and behavior. We are very close with our ped. She has seen Mckenna on good days and bad. She can not believe the difference in behavior on good days and bad ones. Dont worry your not a bad mom for thinking that. BREATH. it will be ok. Widner <nurse0300@...> wrote: his pain is all of the time or he says it is he limps all of the time he just turns on when at the rheumys i think that this is partly the rheumys fault and he has told us that himself that from the get go they laughed and goofed off at this appts and caleb thinks that is how he is to be when he is there. the rheumy when i tell him that he was just on his last leg so to speak and then is meracously better when he gets there he assures us that he believes us and this is partly his fault for goofing off from the start, but this is typical for JRA........ Issadora <FlyfreeIzzie@...> wrote: oh yeh and re. video games... i was just trying to come up with some examples is all. I did read a study recently that said video games were great for pain management!! I was happy to read that as I enjoy them and they also help distract me from pain. I was just trying to make the point that is claimed that when kids are just saying they are in pain for attention, it ussualy shows up as an obvious excuse when one can see they pick and choose to have pain only during activities they dont wan tto do versus ones they want to do. Izzie On Jan 24, 2008 4:32 AM, nurse0300 <nurse0300@...> wrote: > his reply to this statement about arthritis is he wants to > physically see it present for 6 weeks before he will make an > official diagnosis that is see it 6 weeks consectuvily in the same > joint. the thing about hemetology is we have already been there and > already had all of that ruled out.and now we are going back to rule > all of that out again. as far as faking well this am claeb woke up > crying and asking for a shot he hates shot and blood draws he said > that if a shot can make him feel better he is asking for one. now i > really feel rotten. and now we have no meds to give him except > tylneol whcih pretty much does nothing. poor guy i feel horrible! > i guess when he feels better playing the video games he feels > better because it takes his mind off of it and he is sitting still. > > > > > > > > ....have you googled the nosebleeds? Does he have lymph > node > > > swollen? It is interesting cause this is kinda how our > grandaughter acts. It > > > is a 3 hour drive to her ped rheumy and when she gets there she > has been > > > cooped up in a carseat for 3 hours and is keyed up. The rheumy > doesn't see a > > > kid that is hurting or has a fever. The time before last..she > went downhill > > > right after the appt and got her regular fever and got listless. > It is > > > frustrating. Sorry you are going thru this. Have they mentioned > the > > > malignancy thing to you again? I know a week or so ago you were > asking about > > > that. When do you get your labs back? Hang in there...sometimes > the > > > arthritis thing shows up later after the onset of the other > stuff especially > > > with systemic. Let me know what happens with the labs. Do you go > get your > > > results before the doctor tells you? I always pick up the > results from the > > > lab or the medical records. That way I keep my own file so if I > change docs > > > or get a refereral to a specialist..I have all my records. Just > a thought... > > > Hugs.Flower > > > > > > one rotten mom? > > > > > > Ok well we went to see the rheumy again today. I am just getting > so > > > upset and having alot of trouble understanding this whole thing. > > > The dr still had jia at the top of his list but thinks that > seeing > > > hemog is a very good thing that they need to see him again, but > > > again thinks its probably jia. Now for the rotten mom thing. I > > > know that in the past parents have said that their kids turn off > and > > > on like a light bulb. Which they rheumy has said that he is just > > > waiting for the labs or for calebs joints to show definate > arthritis > > > that he has had some but the kind that has came and gone. Ok for > > > this rotten mom thing. I am just taken back at our dr > > > visits.....Caleb seems like he is having a bad day and can > barley go > > > and when we get to see the DR he acts fine. when asking him why > and > > > how things changed he says he acts like that because he is afraid > > > that he is going to get his blood drawn and if he acts ok that hw > > > wont have to get his blood drawn. Ok that kinda makes since but > he > > > knows that if they do not see anything that chances are they are > > > going to draw blood anyway. the dr has made a comment about caleb > > > being tight lipped about his sx because he knows that he dosent > want > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > these symptoms go. I guess i am just confused does he really feel > > > bad does he really hurt or does he just need a little more > > > attention. HE is adamenment that he has pain and always is > > > consistant with this and has fevers and rashes which i know that > > > this is definate you cant stretch or fake a fever or rash. Has > > > anyone ever thought this about your child or his symptoms i feel > > > awful about even suggesting such a thing i guess i am back to my > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > please dont think i am a bad parent and please tell me that you > have > > > thought this before or am i just going nuts and my mind is > > > wondering. when asking my mom or husband that was with caleb > today > > > as well as myself they agree something is wrong but why cant they > > > get us a diagnosis. they took him off all meds until labs come > back > > > due to the nosebleeds. I guess i am just confused about this > crazy > > > disease. > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > 1/23/2008 > > > 10:24 AM > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Yes, would have more pain after the visit. I always attributed it to the manipulations the dr had to do feel for any swelling. would say it wasn't hurting until after the dr moved it around. Plus, we often had residents in the room and of course they had to do an exam and the dr would then do an even more detailed exam. Plus, if he is feeling stressed from the visit, that can also cause a flare. Michele ________________________________ From: [mailto: ] On Behalf Of Widner Sent: Thursday, January 24, 2008 11:16 AM Subject: RE: one rotten mom? i just had a thought caleb the last 3 rheumy visits he has missed school the next dat due to pain/fever/rash. the pain is terrible the next day. has anyone else noticed the same thing? its after noon here and he is still in bed and hurting. poor guy. " Tepper, Michele " <MTepper@... <mailto:MTepper%40ftportfolios.com> > wrote: What you are seeing in Caleb is the whole " I'm fine " thing these kids go through. We have often had discussions here about how the kids are in pain, or limping or struggling, but when the dr asks how they are doing the answer is always " I'm fine " . Makes you want to tear your hair out as a parent. I know did it all the time. They have many reasons for doing it - trying to seem better than they are so they don't have to take more meds, or go through more tests, or they are so used to feeling the way they do it feels normal to them. Believe me you are not a rotten mom, nor are you crazy. We have all had that frustration. The only thing I could do was to remind he must be honest with the dr. Keep your journal and bring it with, so you can pinpoint how you observe him between visits. Getting a diagnosis can be so hard and take so long. You know something is wrong; you will keep at it until it gets figured out. Hugs, Michele ( 20, spondy) ________________________________ From: <mailto: %40> [mailto: <mailto: %40> ] On Behalf Of nurse0300 Sent: Wednesday, January 23, 2008 10:11 PM <mailto: %40> Subject: one rotten mom? Ok well we went to see the rheumy again today. I am just getting so upset and having alot of trouble understanding this whole thing. The dr still had jia at the top of his list but thinks that seeing hemog is a very good thing that they need to see him again, but again thinks its probably jia. Now for the rotten mom thing. I know that in the past parents have said that their kids turn off and on like a light bulb. Which they rheumy has said that he is just waiting for the labs or for calebs joints to show definate arthritis that he has had some but the kind that has came and gone. Ok for this rotten mom thing. I am just taken back at our dr visits.....Caleb seems like he is having a bad day and can barley go and when we get to see the DR he acts fine. when asking him why and how things changed he says he acts like that because he is afraid that he is going to get his blood drawn and if he acts ok that hw wont have to get his blood drawn. Ok that kinda makes since but he knows that if they do not see anything that chances are they are going to draw blood anyway. the dr has made a comment about caleb being tight lipped about his sx because he knows that he dosent want the blood drawn or shots etc. Caleb just has puzzled be as far as these symptoms go. I guess i am just confused does he really feel bad does he really hurt or does he just need a little more attention. HE is adamenment that he has pain and always is consistant with this and has fevers and rashes which i know that this is definate you cant stretch or fake a fever or rash. Has anyone ever thought this about your child or his symptoms i feel awful about even suggesting such a thing i guess i am back to my denial phase. he has all sx of JIA except for the arthritis. oh please dont think i am a bad parent and please tell me that you have thought this before or am i just going nuts and my mind is wondering. when asking my mom or husband that was with caleb today as well as myself they agree something is wrong but why cant they get us a diagnosis. they took him off all meds until labs come back due to the nosebleeds. I guess i am just confused about this crazy disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 - Grant is the same way when we go to appt's. He is always " good " and he isn't scared of having blood drawn! As far as the diagnosis goes. On our 1st visit to the rheumy he found swollen joints in Grant and told us that he suspected PsA but couldn't give us a definate dx until we came back in 6 weeks and he found inflammation then as well. He also told me once that it is the patients that come in with pain and no inflammation that it is really hard to diagnose. Take that for whatever its worth. I hope you get a diagnosis really soon! and Grant/10/PsA/Uveitis > > > > > > > ....have you googled the nosebleeds? Does he have lymph > > node > > > > swollen? It is interesting cause this is kinda how our > > grandaughter acts. It > > > > is a 3 hour drive to her ped rheumy and when she gets there she > > has been > > > > cooped up in a carseat for 3 hours and is keyed up. The rheumy > > doesn't see a > > > > kid that is hurting or has a fever. The time before last..she > > went downhill > > > > right after the appt and got her regular fever and got listless. > > It is > > > > frustrating. Sorry you are going thru this. Have they mentioned > > the > > > > malignancy thing to you again? I know a week or so ago you were > > asking about > > > > that. When do you get your labs back? Hang in there...sometimes > > the > > > > arthritis thing shows up later after the onset of the other > > stuff especially > > > > with systemic. Let me know what happens with the labs. Do you go > > get your > > > > results before the doctor tells you? I always pick up the > > results from the > > > > lab or the medical records. That way I keep my own file so if I > > change docs > > > > or get a refereral to a specialist..I have all my records. Just > > a thought... > > > > Hugs.Flower > > > > > > > > one rotten mom? > > > > > > > > Ok well we went to see the rheumy again today. I am just getting > > so > > > > upset and having alot of trouble understanding this whole thing. > > > > The dr still had jia at the top of his list but thinks that > > seeing > > > > hemog is a very good thing that they need to see him again, but > > > > again thinks its probably jia. Now for the rotten mom thing. I > > > > know that in the past parents have said that their kids turn off > > and > > > > on like a light bulb. Which they rheumy has said that he is just > > > > waiting for the labs or for calebs joints to show definate > > arthritis > > > > that he has had some but the kind that has came and gone. Ok for > > > > this rotten mom thing. I am just taken back at our dr > > > > visits.....Caleb seems like he is having a bad day and can > > barley go > > > > and when we get to see the DR he acts fine. when asking him why > > and > > > > how things changed he says he acts like that because he is afraid > > > > that he is going to get his blood drawn and if he acts ok that hw > > > > wont have to get his blood drawn. Ok that kinda makes since but > > he > > > > knows that if they do not see anything that chances are they are > > > > going to draw blood anyway. the dr has made a comment about caleb > > > > being tight lipped about his sx because he knows that he dosent > > want > > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > > these symptoms go. I guess i am just confused does he really feel > > > > bad does he really hurt or does he just need a little more > > > > attention. HE is adamenment that he has pain and always is > > > > consistant with this and has fevers and rashes which i know that > > > > this is definate you cant stretch or fake a fever or rash. Has > > > > anyone ever thought this about your child or his symptoms i feel > > > > awful about even suggesting such a thing i guess i am back to my > > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > > please dont think i am a bad parent and please tell me that you > > have > > > > thought this before or am i just going nuts and my mind is > > > > wondering. when asking my mom or husband that was with caleb > > today > > > > as well as myself they agree something is wrong but why cant they > > > > get us a diagnosis. they took him off all meds until labs come > > back > > > > due to the nosebleeds. I guess i am just confused about this > > crazy > > > > disease. > > > > > > > > ---------------------------------------------------------- > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > > 1/23/2008 > > > > 10:24 AM > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 ...does a high sed rate count for sign of inflammation?? one rotten mom? > > > > > > > > Ok well we went to see the rheumy again today. I am just getting > > so > > > > upset and having alot of trouble understanding this whole thing. > > > > The dr still had jia at the top of his list but thinks that > > seeing > > > > hemog is a very good thing that they need to see him again, but > > > > again thinks its probably jia. Now for the rotten mom thing. I > > > > know that in the past parents have said that their kids turn off > > and > > > > on like a light bulb. Which they rheumy has said that he is just > > > > waiting for the labs or for calebs joints to show definate > > arthritis > > > > that he has had some but the kind that has came and gone. Ok for > > > > this rotten mom thing. I am just taken back at our dr > > > > visits.....Caleb seems like he is having a bad day and can > > barley go > > > > and when we get to see the DR he acts fine. when asking him why > > and > > > > how things changed he says he acts like that because he is afraid > > > > that he is going to get his blood drawn and if he acts ok that hw > > > > wont have to get his blood drawn. Ok that kinda makes since but > > he > > > > knows that if they do not see anything that chances are they are > > > > going to draw blood anyway. the dr has made a comment about caleb > > > > being tight lipped about his sx because he knows that he dosent > > want > > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > > these symptoms go. I guess i am just confused does he really feel > > > > bad does he really hurt or does he just need a little more > > > > attention. HE is adamenment that he has pain and always is > > > > consistant with this and has fevers and rashes which i know that > > > > this is definate you cant stretch or fake a fever or rash. Has > > > > anyone ever thought this about your child or his symptoms i feel > > > > awful about even suggesting such a thing i guess i am back to my > > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > > please dont think i am a bad parent and please tell me that you > > have > > > > thought this before or am i just going nuts and my mind is > > > > wondering. when asking my mom or husband that was with caleb > > today > > > > as well as myself they agree something is wrong but why cant they > > > > get us a diagnosis. they took him off all meds until labs come > > back > > > > due to the nosebleeds. I guess i am just confused about this > > crazy > > > > disease. > > > > > > > > ---------------------------------------------------------- > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > > 1/23/2008 > > > > 10:24 AM > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 I know you are very very frustrated, and maybe Dr. Passo is not a good fit for you, but he was a godsend to us...he is among the very best in the world and I trust him implicitly....I know that this is so hard for you, but I just wanted to offer you encouragement...if you do decide on a 2nd opinion I would get someone in the same practice...odd that I suggest that but these docs are world renowned! If one of them thought differently than Dr. Passo they would certainly not be afraid to say so...you just can't find any better ped rheumy's than right there at Cincy Childrens... Just my 2 cents and Rob 18 JAS one rotten mom? > > > > > > > > > Ok well we went to see the rheumy again today. I am just getting > > so > > > upset and having alot of trouble understanding this whole thing. > > > The dr still had jia at the top of his list but thinks that > > seeing > > > hemog is a very good thing that they need to see him again, but > > > again thinks its probably jia. Now for the rotten mom thing. I > > > know that in the past parents have said that their kids turn off > > and > > > on like a light bulb. Which they rheumy has said that he is just > > > waiting for the labs or for calebs joints to show definate > > arthritis > > > that he has had some but the kind that has came and gone. Ok for > > > this rotten mom thing. I am just taken back at our dr > > > visits.....Caleb seems like he is having a bad day and can > > barley go > > > and when we get to see the DR he acts fine. when asking him why > > and > > > how things changed he says he acts like that because he is > > afraid > > > that he is going to get his blood drawn and if he acts ok that > > hw > > > wont have to get his blood drawn. Ok that kinda makes since but > > he > > > knows that if they do not see anything that chances are they are > > > going to draw blood anyway. the dr has made a comment about > > caleb > > > being tight lipped about his sx because he knows that he dosent > > want > > > the blood drawn or shots etc. Caleb just has puzzled be as far > > as > > > these symptoms go. I guess i am just confused does he really > > feel > > > bad does he really hurt or does he just need a little more > > > attention. HE is adamenment that he has pain and always is > > > consistant with this and has fevers and rashes which i know that > > > this is definate you cant stretch or fake a fever or rash. Has > > > anyone ever thought this about your child or his symptoms i feel > > > awful about even suggesting such a thing i guess i am back > to my > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > please dont think i am a bad parent and please tell me that you > > have > > > thought this before or am i just going nuts and my mind is > > > wondering. when asking my mom or husband that was with caleb > > today > > > as well as myself they agree something is wrong but why cant > > they > > > get us a diagnosis. they took him off all meds until labs come > > back > > > due to the nosebleeds. I guess i am just confused about this > > crazy > > > disease. > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ----------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > > 1/23/2008 10:24 AM > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 : you wrote " He also told me once that it is the patients that come in with pain and no inflammation that it is really hard to diagnose. Take that for whatever its worth. " Let me just say AMEN to that! Although I can tell you Hannah's knuckles are showing signs of swelling, just not enough to get in a picture. I can see it because I know what her hands look like every day. : you are not a rotten a mom, you are a normal mom. I've shared our story with you so know I can relate. 99% of kids do not fake their pain. I hope Celebrex works for you little one and he feels better soon. Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) one rotten mom? > > > > > > > > Ok well we went to see the rheumy again today. I am just getting > > so > > > > upset and having alot of trouble understanding this whole thing. > > > > The dr still had jia at the top of his list but thinks that > > seeing > > > > hemog is a very good thing that they need to see him again, but > > > > again thinks its probably jia. Now for the rotten mom thing. I > > > > know that in the past parents have said that their kids turn off > > and > > > > on like a light bulb. Which they rheumy has said that he is just > > > > waiting for the labs or for calebs joints to show definate > > arthritis > > > > that he has had some but the kind that has came and gone. Ok for > > > > this rotten mom thing. I am just taken back at our dr > > > > visits.....Caleb seems like he is having a bad day and can > > barley go > > > > and when we get to see the DR he acts fine. when asking him why > > and > > > > how things changed he says he acts like that because he is afraid > > > > that he is going to get his blood drawn and if he acts ok that hw > > > > wont have to get his blood drawn. Ok that kinda makes since but > > he > > > > knows that if they do not see anything that chances are they are > > > > going to draw blood anyway. the dr has made a comment about caleb > > > > being tight lipped about his sx because he knows that he dosent > > want > > > > the blood drawn or shots etc. Caleb just has puzzled be as far as > > > > these symptoms go. I guess i am just confused does he really feel > > > > bad does he really hurt or does he just need a little more > > > > attention. HE is adamenment that he has pain and always is > > > > consistant with this and has fevers and rashes which i know that > > > > this is definate you cant stretch or fake a fever or rash. Has > > > > anyone ever thought this about your child or his symptoms i feel > > > > awful about even suggesting such a thing i guess i am back to my > > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > > please dont think i am a bad parent and please tell me that you > > have > > > > thought this before or am i just going nuts and my mind is > > > > wondering. when asking my mom or husband that was with caleb > > today > > > > as well as myself they agree something is wrong but why cant they > > > > get us a diagnosis. they took him off all meds until labs come > > back > > > > due to the nosebleeds. I guess i am just confused about this > > crazy > > > > disease. > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > > 1/23/2008 > > > > 10:24 AM > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Cynde Lee - I don't know for sure. Our rheumy could just feel it in Grants joints. His ankle was visibly swollen but he also found inflammation in his knee that we had no idea about. and Grant 10/PsA/Uveitis > > > > > > > > > ....have you googled the nosebleeds? Does he have > lymph > > > node > > > > > swollen? It is interesting cause this is kinda how our > > > grandaughter acts. It > > > > > is a 3 hour drive to her ped rheumy and when she gets there > she > > > has been > > > > > cooped up in a carseat for 3 hours and is keyed up. The > rheumy > > > doesn't see a > > > > > kid that is hurting or has a fever. The time before last..she > > > went downhill > > > > > right after the appt and got her regular fever and got > listless. > > > It is > > > > > frustrating. Sorry you are going thru this. Have they > mentioned > > > the > > > > > malignancy thing to you again? I know a week or so ago you > were > > > asking about > > > > > that. When do you get your labs back? Hang in > there...sometimes > > > the > > > > > arthritis thing shows up later after the onset of the other > > > stuff especially > > > > > with systemic. Let me know what happens with the labs. Do > you go > > > get your > > > > > results before the doctor tells you? I always pick up the > > > results from the > > > > > lab or the medical records. That way I keep my own file so > if I > > > change docs > > > > > or get a refereral to a specialist..I have all my records. > Just > > > a thought... > > > > > Hugs.Flower > > > > > > > > > > one rotten mom? > > > > > > > > > > Ok well we went to see the rheumy again today. I am just > getting > > > so > > > > > upset and having alot of trouble understanding this whole > thing. > > > > > The dr still had jia at the top of his list but thinks that > > > seeing > > > > > hemog is a very good thing that they need to see him again, > but > > > > > again thinks its probably jia. Now for the rotten mom thing. > I > > > > > know that in the past parents have said that their kids turn > off > > > and > > > > > on like a light bulb. Which they rheumy has said that he is > just > > > > > waiting for the labs or for calebs joints to show definate > > > arthritis > > > > > that he has had some but the kind that has came and gone. Ok > for > > > > > this rotten mom thing. I am just taken back at our dr > > > > > visits.....Caleb seems like he is having a bad day and can > > > barley go > > > > > and when we get to see the DR he acts fine. when asking him > why > > > and > > > > > how things changed he says he acts like that because he is > afraid > > > > > that he is going to get his blood drawn and if he acts ok > that hw > > > > > wont have to get his blood drawn. Ok that kinda makes since > but > > > he > > > > > knows that if they do not see anything that chances are they > are > > > > > going to draw blood anyway. the dr has made a comment about > caleb > > > > > being tight lipped about his sx because he knows that he > dosent > > > want > > > > > the blood drawn or shots etc. Caleb just has puzzled be as > far as > > > > > these symptoms go. I guess i am just confused does he really > feel > > > > > bad does he really hurt or does he just need a little more > > > > > attention. HE is adamenment that he has pain and always is > > > > > consistant with this and has fevers and rashes which i know > that > > > > > this is definate you cant stretch or fake a fever or rash. > Has > > > > > anyone ever thought this about your child or his symptoms i > feel > > > > > awful about even suggesting such a thing i guess i am back > to my > > > > > denial phase. he has all sx of JIA except for the arthritis. > oh > > > > > please dont think i am a bad parent and please tell me that > you > > > have > > > > > thought this before or am i just going nuts and my mind is > > > > > wondering. when asking my mom or husband that was with caleb > > > today > > > > > as well as myself they agree something is wrong but why cant > they > > > > > get us a diagnosis. they took him off all meds until labs > come > > > back > > > > > due to the nosebleeds. I guess i am just confused about this > > > crazy > > > > > disease. > > > > > > > > > > --------------------------------------------------------- - > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG Free Edition. > > > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release > Date: > > > 1/23/2008 > > > > > 10:24 AM > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 , I agree with .You have the best ped rheumies in the world at your fingertips,why go elsewhere?We travel from middle Tn. to see Dr.Lovell.Cinci and Lovell didn't save my childs life but they definately saved his childhood.You can read 's story on CCHMC change the outcome paige.He was also 2 when diagnosed with systemic. Dr.Lovell welcomes phone calls from parents and not just his patiants.He gives his direct # on his buisiness cards so you can call him direct if you wish.It's (513)636-8071 and the best time to reach him is after hours.5:00-6:00 pm. Hang in there and remember you are not alone. Hugs Becki and 9 systemic one rotten mom? > > > > > > > > > Ok well we went to see the rheumy again today. I am just getting > > so > > > upset and having alot of trouble understanding this whole thing. > > > The dr still had jia at the top of his list but thinks that > > seeing > > > hemog is a very good thing that they need to see him again, but > > > again thinks its probably jia. Now for the rotten mom thing. I > > > know that in the past parents have said that their kids turn off > > and > > > on like a light bulb. Which they rheumy has said that he is just > > > waiting for the labs or for calebs joints to show definate > > arthritis > > > that he has had some but the kind that has came and gone. Ok for > > > this rotten mom thing. I am just taken back at our dr > > > visits.....Caleb seems like he is having a bad day and can > > barley go > > > and when we get to see the DR he acts fine. when asking him why > > and > > > how things changed he says he acts like that because he is > > afraid > > > that he is going to get his blood drawn and if he acts ok that > > hw > > > wont have to get his blood drawn. Ok that kinda makes since but > > he > > > knows that if they do not see anything that chances are they are > > > going to draw blood anyway. the dr has made a comment about > > caleb > > > being tight lipped about his sx because he knows that he dosent > > want > > > the blood drawn or shots etc. Caleb just has puzzled be as far > > as > > > these symptoms go. I guess i am just confused does he really > > feel > > > bad does he really hurt or does he just need a little more > > > attention. HE is adamenment that he has pain and always is > > > consistant with this and has fevers and rashes which i know that > > > this is definate you cant stretch or fake a fever or rash. Has > > > anyone ever thought this about your child or his symptoms i feel > > > awful about even suggesting such a thing i guess i am back > to my > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > please dont think i am a bad parent and please tell me that you > > have > > > thought this before or am i just going nuts and my mind is > > > wondering. when asking my mom or husband that was with caleb > > today > > > as well as myself they agree something is wrong but why cant > > they > > > get us a diagnosis. they took him off all meds until labs come > > back > > > due to the nosebleeds. I guess i am just confused about this > > crazy > > > disease. > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > ----------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > > 1/23/2008 10:24 AM > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 you know I think that our big problem is with the fellow that we have. I think that the problem with communication is the fellow not dr passo. When he actually gets to call us her is very nice and caring but that fellow that is a whole different can of worms so to speak. LOL I guess when your child has been sick over 3 months and you really dont have any answers you tend to get a little discruntal i know breathe. Dr Passo in our last visit really thought it was the right thing to do is to see hemog. he kept saying well i can tell you what i think but he said well nevermind I will just let hemog explain it to you its their area of expirtese. what to think of that..... > > > > > > > > ....have you googled the nosebleeds? Does he have lymph > > > node swollen? It is interesting cause this is kinda how our > > > grandaughter acts. It is a 3 hour drive to her ped rheumy and when > > > she gets there she has been cooped up in a carseat for 3 hours and > > > is keyed up. The rheumy doesn't see a kid that is hurting or > > has a > > > fever. The time before last..she went downhill right after the appt > > > and got her regular fever and got listless. It is frustrating. Sorry > > > you are going thru this. Have they mentioned the malignancy > > thing to > > > you again? I know a week or so ago you were asking about that. When > > > do you get your labs back? Hang in there...sometimes the arthritis > > > thing shows up later after the onset of the other stuff especially > > > with systemic. Let me know what happens with the labs. Do you > > go get > > > your results before the doctor tells you? I always pick up the > > > results from the lab or the medical records. That way I keep > > my own > > > file so if I change docs or get a refereral to a specialist.. I have > > > all my records. Just a thought... > > > > Hugs.Flower > > > > one rotten mom? > > > > > > > > > > > > Ok well we went to see the rheumy again today. I am just getting > > > so > > > > upset and having alot of trouble understanding this whole thing. > > > > The dr still had jia at the top of his list but thinks that > > > seeing > > > > hemog is a very good thing that they need to see him again, but > > > > again thinks its probably jia. Now for the rotten mom thing. I > > > > know that in the past parents have said that their kids turn off > > > and > > > > on like a light bulb. Which they rheumy has said that he is just > > > > waiting for the labs or for calebs joints to show definate > > > arthritis > > > > that he has had some but the kind that has came and gone. Ok for > > > > this rotten mom thing. I am just taken back at our dr > > > > visits.....Caleb seems like he is having a bad day and can > > > barley go > > > > and when we get to see the DR he acts fine. when asking him why > > > and > > > > how things changed he says he acts like that because he is > > > afraid > > > > that he is going to get his blood drawn and if he acts ok that > > > hw > > > > wont have to get his blood drawn. Ok that kinda makes since but > > > he > > > > knows that if they do not see anything that chances are they are > > > > going to draw blood anyway. the dr has made a comment about > > > caleb > > > > being tight lipped about his sx because he knows that he dosent > > > want > > > > the blood drawn or shots etc. Caleb just has puzzled be as far > > > as > > > > these symptoms go. I guess i am just confused does he really > > > feel > > > > bad does he really hurt or does he just need a little more > > > > attention. HE is adamenment that he has pain and always is > > > > consistant with this and has fevers and rashes which i know that > > > > this is definate you cant stretch or fake a fever or rash. Has > > > > anyone ever thought this about your child or his symptoms i feel > > > > awful about even suggesting such a thing i guess i am back > > to my > > > > denial phase. he has all sx of JIA except for the arthritis. oh > > > > please dont think i am a bad parent and please tell me that you > > > have > > > > thought this before or am i just going nuts and my mind is > > > > wondering. when asking my mom or husband that was with caleb > > > today > > > > as well as myself they agree something is wrong but why cant > > > they > > > > get us a diagnosis. they took him off all meds until labs come > > > back > > > > due to the nosebleeds. I guess i am just confused about this > > > crazy > > > > disease. > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > ----------- > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: > > > 1/23/2008 10:24 AM > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 ..I am really concerned about little Caleb! Does he have any bruising? If they are thinking malignancy..did the blood work support that dx? Are they doing another bone marrow test on Monday?? What particular cancer marker test did they do?? Hang in there...I am praying for you and your family and little ones! hugs,Cynde one rotten mom? > > > Ok well we went to see the rheumy again today. I am just getting so > upset and having alot of trouble understanding this whole thing. > The dr still had jia at the top of his list but thinks that seeing > hemog is a very good thing that they need to see him again, but > again thinks its probably jia. Now for the rotten mom thing. I > know that in the past parents have said that their kids turn off and > on like a light bulb. Which they rheumy has said that he is just > waiting for the labs or for calebs joints to show definate arthritis > that he has had some but the kind that has came and gone. Ok for > this rotten mom thing. I am just taken back at our dr > visits.....Caleb seems like he is having a bad day and can barley go > and when we get to see the DR he acts fine. when asking him why and > how things changed he says he acts like that because he is afraid > that he is going to get his blood drawn and if he acts ok that hw > wont have to get his blood drawn. Ok that kinda makes since but he > knows that if they do not see anything that chances are they are > going to draw blood anyway. the dr has made a comment about caleb > being tight lipped about his sx because he knows that he dosent want > the blood drawn or shots etc. Caleb just has puzzled be as far as > these symptoms go. I guess i am just confused does he really feel > bad does he really hurt or does he just need a little more > attention. HE is adamenment that he has pain and always is > consistant with this and has fevers and rashes which i know that > this is definate you cant stretch or fake a fever or rash. Has > anyone ever thought this about your child or his symptoms i feel > awful about even suggesting such a thing i guess i am back to my > denial phase. he has all sx of JIA except for the arthritis. oh > please dont think i am a bad parent and please tell me that you have > thought this before or am i just going nuts and my mind is > wondering. when asking my mom or husband that was with caleb today > as well as myself they agree something is wrong but why cant they > get us a diagnosis. they took him off all meds until labs come back > due to the nosebleeds. I guess i am just confused about this crazy > disease. > > > > > > > ---------------------------------------------------------- ----------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: 1/23/2008 10:24 AM > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 ps....did he stick to his first dx of JRA? hugs,cynde one rotten mom? > > > Ok well we went to see the rheumy again today. I am just getting so > upset and having alot of trouble understanding this whole thing. > The dr still had jia at the top of his list but thinks that seeing > hemog is a very good thing that they need to see him again, but > again thinks its probably jia. Now for the rotten mom thing. I > know that in the past parents have said that their kids turn off and > on like a light bulb. Which they rheumy has said that he is just > waiting for the labs or for calebs joints to show definate arthritis > that he has had some but the kind that has came and gone. Ok for > this rotten mom thing. I am just taken back at our dr > visits.....Caleb seems like he is having a bad day and can barley go > and when we get to see the DR he acts fine. when asking him why and > how things changed he says he acts like that because he is afraid > that he is going to get his blood drawn and if he acts ok that hw > wont have to get his blood drawn. Ok that kinda makes since but he > knows that if they do not see anything that chances are they are > going to draw blood anyway. the dr has made a comment about caleb > being tight lipped about his sx because he knows that he dosent want > the blood drawn or shots etc. Caleb just has puzzled be as far as > these symptoms go. I guess i am just confused does he really feel > bad does he really hurt or does he just need a little more > attention. HE is adamenment that he has pain and always is > consistant with this and has fevers and rashes which i know that > this is definate you cant stretch or fake a fever or rash. Has > anyone ever thought this about your child or his symptoms i feel > awful about even suggesting such a thing i guess i am back to my > denial phase. he has all sx of JIA except for the arthritis. oh > please dont think i am a bad parent and please tell me that you have > thought this before or am i just going nuts and my mind is > wondering. when asking my mom or husband that was with caleb today > as well as myself they agree something is wrong but why cant they > get us a diagnosis. they took him off all meds until labs come back > due to the nosebleeds. I guess i am just confused about this crazy > disease. > > > > > > > ---------------------------------------------------------- ----------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: 1/23/2008 10:24 AM > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 well we are admitted we came for the hemog visit and they direct admitted us. They are really still not sure what they are thinking ? lymphoma or another cancer or still JRA we just seen neuro which they ordered at MRI of the body and oncology ordered a PET scan, they said we will be here at least 3 days.ugh...keep up the prayers! will spost more when I can, he had a severe nose bleed and lots of bruising last week.when the hemog dr saw him today he took one look at him and said we are admitting him that he has had a great decline in the past month, we are goign to keep him and see what we can find. cynde lee <blooms@...> wrote: ..I am really concerned about little Caleb! Does he have any bruising? If they are thinking malignancy..did the blood work support that dx? Are they doing another bone marrow test on Monday?? What particular cancer marker test did they do?? Hang in there...I am praying for you and your family and little ones! hugs,Cynde one rotten mom? > > > Ok well we went to see the rheumy again today. I am just getting so > upset and having alot of trouble understanding this whole thing. > The dr still had jia at the top of his list but thinks that seeing > hemog is a very good thing that they need to see him again, but > again thinks its probably jia. Now for the rotten mom thing. I > know that in the past parents have said that their kids turn off and > on like a light bulb. Which they rheumy has said that he is just > waiting for the labs or for calebs joints to show definate arthritis > that he has had some but the kind that has came and gone. Ok for > this rotten mom thing. I am just taken back at our dr > visits.....Caleb seems like he is having a bad day and can barley go > and when we get to see the DR he acts fine. when asking him why and > how things changed he says he acts like that because he is afraid > that he is going to get his blood drawn and if he acts ok that hw > wont have to get his blood drawn. Ok that kinda makes since but he > knows that if they do not see anything that chances are they are > going to draw blood anyway. the dr has made a comment about caleb > being tight lipped about his sx because he knows that he dosent want > the blood drawn or shots etc. Caleb just has puzzled be as far as > these symptoms go. I guess i am just confused does he really feel > bad does he really hurt or does he just need a little more > attention. HE is adamenment that he has pain and always is > consistant with this and has fevers and rashes which i know that > this is definate you cant stretch or fake a fever or rash. Has > anyone ever thought this about your child or his symptoms i feel > awful about even suggesting such a thing i guess i am back to my > denial phase. he has all sx of JIA except for the arthritis. oh > please dont think i am a bad parent and please tell me that you have > thought this before or am i just going nuts and my mind is > wondering. when asking my mom or husband that was with caleb today > as well as myself they agree something is wrong but why cant they > get us a diagnosis. they took him off all meds until labs come back > due to the nosebleeds. I guess i am just confused about this crazy > disease. > > > > > > > ---------------------------------------------------------- ----------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: 1/23/2008 10:24 AM > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 ...our thoughts and prayers are with you. I know how difficult it is to have your little one at the hospital. do you have any support from family etc? Just know we are thinking of you and praying for a good result from these tests..if JRA can be " good " ???? Hang in there! Hugs,Cynde one rotten mom? > > > Ok well we went to see the rheumy again today. I am just getting so > upset and having alot of trouble understanding this whole thing. > The dr still had jia at the top of his list but thinks that seeing > hemog is a very good thing that they need to see him again, but > again thinks its probably jia. Now for the rotten mom thing. I > know that in the past parents have said that their kids turn off and > on like a light bulb. Which they rheumy has said that he is just > waiting for the labs or for calebs joints to show definate arthritis > that he has had some but the kind that has came and gone. Ok for > this rotten mom thing. I am just taken back at our dr > visits.....Caleb seems like he is having a bad day and can barley go > and when we get to see the DR he acts fine. when asking him why and > how things changed he says he acts like that because he is afraid > that he is going to get his blood drawn and if he acts ok that hw > wont have to get his blood drawn. Ok that kinda makes since but he > knows that if they do not see anything that chances are they are > going to draw blood anyway. the dr has made a comment about caleb > being tight lipped about his sx because he knows that he dosent want > the blood drawn or shots etc. Caleb just has puzzled be as far as > these symptoms go. I guess i am just confused does he really feel > bad does he really hurt or does he just need a little more > attention. HE is adamenment that he has pain and always is > consistant with this and has fevers and rashes which i know that > this is definate you cant stretch or fake a fever or rash. Has > anyone ever thought this about your child or his symptoms i feel > awful about even suggesting such a thing i guess i am back to my > denial phase. he has all sx of JIA except for the arthritis. oh > please dont think i am a bad parent and please tell me that you have > thought this before or am i just going nuts and my mind is > wondering. when asking my mom or husband that was with caleb today > as well as myself they agree something is wrong but why cant they > get us a diagnosis. they took him off all meds until labs come back > due to the nosebleeds. I guess i am just confused about this crazy > disease. > > > > > > > ---------------------------------------------------------- ----------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.9/1239 - Release Date: 1/23/2008 10:24 AM > > > Quote Link to comment Share on other sites More sharing options...
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