Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 I remember you!!!!!! Nice to hear from you, but I am sorry I can't answer your question. (n,22,systemic) Sent from my iPhone On Jan 25, 2011, at 3:44 PM, " skyleysmom1 " <skyley@...> wrote: > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > Thanks, > Ellie and Riley 13 poly jra and type 1 diabetes > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 I have a friend who has it and she has had tailbone injections through a anestigolist sp. Her last shot has lasted a year. They can do therapy but it is tailbone therapy. Ok think about it. She does have Fibro. I hope this helps. They have two types of injections that they perform on tailbone I can find out more if you would like. It is quite painful. Terri B From: Price Sent: Tuesday, January 25, 2011 7:37 PM Subject: Re: Riley tailbone pain I remember you!!!!!! Nice to hear from you, but I am sorry I can't answer your question. (n,22,systemic) Sent from my iPhone On Jan 25, 2011, at 3:44 PM, " skyleysmom1 " <mailto:skyley%40sbcglobal.net> wrote: > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > Thanks, > Ellie and Riley 13 poly jra and type 1 diabetes > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Hi Ellie, This may or may not be the problem but I felt impressed to tell you our experience. My daughter had been complaining about tail bone pain for weeks or longer. She was seen by her rheumy who ordered xrays, MRI, etc and they couldn't find anything. They sent her to a pain clinic thinking it was part of her JRA but she just needed to learn to deal with the pain, etc. They wanted her to see a counselor, to do swim therapy, you name it. So we saw at least 4 or 5 docs over weeks and months. And the pain was no better. They had adjusted her medications, gave her pain meds, etc. One night she sat down to do her homework and just started to sob. She was in so much pain. I asked her if she wanted to go to the ER but she had such a bad experience there for another JRA issue that she said no. I asked if she wanted to see our ped (who was SO amazing--so sad that he retired) and she said yes, because he was the most amazing doctor ever!!! So I helped her to bed and she cried herself to sleep. I got up early and called the pediatrician's office and explained the situation and they had me bring her right in. He asked 'has anyone really looked at the area " ---I said no, not really, they just sent us for all kinds of tests, etc. Well he had a guess of what it was and when he looked at it, he confirmed it. She was diagnosed with Pilondial Cyst. By the time my daughter's cyst was diagnosed it had advanced quite severely and needed emergency surgery, etc. I don't say that to scare you but to have your doctor evaluate it now so that it doesn't become something much more serious later. The doctors all chalked it up to her JRA and didn't even consider something else sadly. I would question the same with your daughter--if her disease is not active then it is likely something else. My daughters disease was/is still active so that is all they considered. I would hate to see anyone have to go through what she did when it could have been caught early and treated much more simply. I have regretted this for years that I didn't realize it was something else than " just JRA " . Hope that you find a solution to end the pain soon. e, mom to 'joe' 24 poly JRA+ From: skyleysmom1 <skyley@...> Subject: Riley tailbone pain Date: Tuesday, January 25, 2011, 3:44 PM Â Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. Thanks, Ellie and Riley 13 poly jra and type 1 diabetes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Juvenile ankylosing spondylitis affects the tailbone/SI (sacroiliac) joints. Rob has some fusion there. A simple xray will show it if that is true. Wish Riley were feeling better! and Rob 21 Re: Riley tailbone pain " " < > > I remember you!!!!!! > Nice to hear from you, but I am sorry I can't answer your > question. (n,22,systemic) > > Sent from my iPhone > > On Jan 25, 2011, at 3:44 PM, " skyleysmom1 " > <skyley@...> wrote: > > > Hi, it has been a long time since I have posted here. Some of > you may remember us. My daughter Riley was diagnosed with poly > JRA when she was 4. She is now 13 and has been in clinical > remission for about 4-5 years. Riley was diagnosed with > type 1 diabetes on March 18, 2009. She has been complaining of > pain in her tailbone for the past few months and her > Endocrinologist asked her Rheumatologist about it today and he > said it might be related to her arthritis. She has no other > arthritic symptoms and is on no medication other than insulin. > Has anybody here or their children experienced arthritis related > tailbone while in remission and with no other symptoms? Any > advice? We are going to get a pelvic xray. > > > > Thanks, > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 This type of pain can happen from spondylitis/spondyloarthropy. often has lower back pain. It is the tendons in the area that become inflamed. Michele ( 23, spondy) From: [mailto: ] On Behalf Of Price Sent: Tuesday, January 25, 2011 6:37 PM Subject: Re: Riley tailbone pain I remember you!!!!!! Nice to hear from you, but I am sorry I can't answer your question. (n,22,systemic) Sent from my iPhone On Jan 25, 2011, at 3:44 PM, " skyleysmom1 " <skyley@...<mailto:skyley%40sbcglobal.net>> wrote: > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > Thanks, > Ellie and Riley 13 poly jra and type 1 diabetes > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Hi ! I remember you too I can't believe n is 22! Thanks Michele, I also remember you & Chris. I am just wondering if after several years with no active disease and no dx of spondy when her arthritis was active it is likely that that is what it is. I guess I won't know until she sees her rheumy and has an xray. Will an xray determine weather or not it is spondy? If not how do they determine it? Thanks, Ellie (Riley 13 poly & type 1 diabetes) > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > Thanks, > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Hi ! I didn't read this until after I saw and replied to Michele's post. Thanks for the sweet wishes! I hope it is just growing pains! And thanks for the info, guess we'd better get that xray... How is your handsome son? Ellie & Riley poly & type 1 diabetes > > > > > Hi, it has been a long time since I have posted here. Some of > > you may remember us. My daughter Riley was diagnosed with poly > > JRA when she was 4. She is now 13 and has been in clinical > > remission for about 4-5 years. Riley was diagnosed with > > type 1 diabetes on March 18, 2009. She has been complaining of > > pain in her tailbone for the past few months and her > > Endocrinologist asked her Rheumatologist about it today and he > > said it might be related to her arthritis. She has no other > > arthritic symptoms and is on no medication other than insulin. > > Has anybody here or their children experienced arthritis related > > tailbone while in remission and with no other symptoms? Any > > advice? We are going to get a pelvic xray. > > > > > > Thanks, > > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Hi Terri, Oh! That makes me nervous! I will let you know if I need more info on that. Thanks! Ellie & Riley poly & type 1 diabetes > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > Thanks, > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 With the dr felt the inflammation in the pelvic rim. He did not have an xray. Then the change in diagnosis from pauci to spondy was based on the other areas of pain and inflammation. As said, if there is any fusion happening in the spine that will show up on the xray. Given Riley's age, I am wondering if unfortunately something triggered in her system. Plus with the addition of another auto immune disease, I wonder if that could set the arthritis off also? I hope you get some answers and that the JA has stayed in remission. Let us know how it goes, Michele From: [mailto: ] On Behalf Of skyleysmom1 Sent: Wednesday, January 26, 2011 10:20 AM Subject: Re: Riley tailbone pain Hi ! I remember you too I can't believe n is 22! Thanks Michele, I also remember you & Chris. I am just wondering if after several years with no active disease and no dx of spondy when her arthritis was active it is likely that that is what it is. I guess I won't know until she sees her rheumy and has an xray. Will an xray determine weather or not it is spondy? If not how do they determine it? Thanks, Ellie (Riley 13 poly & type 1 diabetes) > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > Thanks, > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Wow, thanks e for sharing that story. I will absolutely mention that to her ped. He misdiagnosed her arthritis all those years ago and he chalked this up to growing pains. So frustrating. I really appreciate your post. I also remember you and " Joe " ! Ellie & Riley poly & type 1 diabetes > > From: skyleysmom1 <skyley@...> > Subject: Riley tailbone pain > > Date: Tuesday, January 25, 2011, 3:44 PM > > > > > > > > Â > > > > > > > > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > Thanks, > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 HLA-B27 is the marker for spondy, but even if it is negative a person can have it. Makes no sense, huh? Rob was +HLA B27. He is doing fine. Still claims to be in remission. Got his car towed on campus yesterday. Has a year of school left then he plans on moving to San Diego! lol Love and hugs, and Rob 21 Re: Riley tailbone pain > Hi ! > I didn't read this until after I saw and replied to Michele's > post. > Thanks for the sweet wishes! I hope it is just growing pains! > And thanks for the info, guess we'd better get that xray... > How is your handsome son? > Ellie & Riley poly & type 1 diabetes > > > > > > > > > Hi, it has been a long time since I have posted here. Some > of > > > you may remember us. My daughter Riley was diagnosed with > poly > > > JRA when she was 4. She is now 13 and has been in clinical > > > remission for about 4-5 years. Riley was diagnosed > with > > > type 1 diabetes on March 18, 2009. She has been complaining > of > > > pain in her tailbone for the past few months and her > > > Endocrinologist asked her Rheumatologist about it today and > he > > > said it might be related to her arthritis. She has no other > > > arthritic symptoms and is on no medication other than > insulin. > > > Has anybody here or their children experienced arthritis > related > > > tailbone while in remission and with no other symptoms? Any > > > advice? We are going to get a pelvic xray. > > > > > > > > Thanks, > > > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 e, This really strange..... my daughter (non RA) has been complaining off and on about her tailbone hurting and mentioned it again last night. She had a hard time getting off the floor and brought it up again. She said that she has a hard time sitting in the school seats and bleachers. I have a basic discription of the area, tell me if it is in the right place. It is just above where the " crack " of her buttocks is... and when I poked around there she didn't complain of too much pain but when she bent over slightly that hurt and when I touched the same area then she yelled out in pain. I can't see anything there, but I am no doc either. Let me know if I am in the ball park with this...... > > From: skyleysmom1 <skyley@...> > Subject: Riley tailbone pain > > Date: Tuesday, January 25, 2011, 3:44 PM > > > > > > > > Â > > > > > > > > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > Thanks, > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Thanks Michele. I am worried. I will keep you all posted. I think a visit with her rheumy is probably in order. Ellie & Riley 13 > > > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > > > Thanks, > > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Oh dear! We will have to visit when he is in San Diego! > > > > > > > > > Hi, it has been a long time since I have posted here. Some > > of > > > > you may remember us. My daughter Riley was diagnosed with > > poly > > > > JRA when she was 4. She is now 13 and has been in clinical > > > > remission for about 4-5 years. Riley was diagnosed > > with > > > > type 1 diabetes on March 18, 2009. She has been complaining > > of > > > > pain in her tailbone for the past few months and her > > > > Endocrinologist asked her Rheumatologist about it today and > > he > > > > said it might be related to her arthritis. She has no other > > > > arthritic symptoms and is on no medication other than > > insulin. > > > > Has anybody here or their children experienced arthritis > > related > > > > tailbone while in remission and with no other symptoms? Any > > > > advice? We are going to get a pelvic xray. > > > > > > > > > > Thanks, > > > > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 e, do you know what your pediatrician saw that confirmed his diagnosis? Could he see or feel the cyst? Thanks, Ellie & Riley > > > > From: skyleysmom1 <skyley@> > > Subject: Riley tailbone pain > > > > Date: Tuesday, January 25, 2011, 3:44 PM > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > > > > > Thanks, > > > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 Hi , This is the area that is common for a Pilondal Cyst. You can find pictures and descriptions and some are pretty graphic. It can certainly be this because it is in the right area. Thin people can complain of pain when sitting on bleachers etc too just because they don't have any padding there. Another potential cause could be sciatica. Make an appointment with your pediatrician and see what happens. Pain in anyone isn't normal. Let us know what you find out. e, mom to " joe " 24 poly+ From: <mariamaul08@...> Subject: Re: Riley tailbone pain Date: Wednesday, January 26, 2011, 10:24 AM  e, This really strange..... my daughter (non RA) has been complaining off and on about her tailbone hurting and mentioned it again last night. She had a hard time getting off the floor and brought it up again. She said that she has a hard time sitting in the school seats and bleachers. I have a basic discription of the area, tell me if it is in the right place. It is just above where the " crack " of her buttocks is... and when I poked around there she didn't complain of too much pain but when she bent over slightly that hurt and when I touched the same area then she yelled out in pain. I can't see anything there, but I am no doc either. Let me know if I am in the ball park with this...... > > From: skyleysmom1 <skyley@...> > Subject: Riley tailbone pain > > Date: Tuesday, January 25, 2011, 3:44 PM > > > > > > > >  > > > > > > > > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > Thanks, > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 For one thing--my ped was the most amazing doctor ever! We had seen many many people and been treated by many before we even went to him about the JRA (originally thought it was a dance injury) and finally gave up on all of them. He is the one who diagnosed her. And he diagnosed my premie with the things that helped us to find treatment for him. So part of it was just his knowledge--he was an old school doc who didn't rely on testing but his knowledge. Even before he looked at the area--he knew what was likely the problem. And you have to realize too that hers was very advanced by the time we went in. It was swollen and obviously an issue for her. But it you mention it to your doctor as a possible diagnosis he or she should know what to look for. And it could not be this at all---I just wish someone would have known about this and told us so my poor girl didn't have to go through so much pain and agony. Good luck and let us know what you find out! e, mom to " joe " 24 poly+ From: skyleysmom1 <skyley@...> Subject: Re: Riley tailbone pain Date: Wednesday, January 26, 2011, 5:37 PM  e, do you know what your pediatrician saw that confirmed his diagnosis? Could he see or feel the cyst? Thanks, Ellie & Riley > > > > From: skyleysmom1 <skyley@> > > Subject: Riley tailbone pain > > > > Date: Tuesday, January 25, 2011, 3:44 PM > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > Hi, it has been a long time since I have posted here. Some of you may remember us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 and has been in clinical remission for about 4-5 years. Riley was diagnosed with type 1 diabetes on March 18, 2009. She has been complaining of pain in her tailbone for the past few months and her Endocrinologist asked her Rheumatologist about it today and he said it might be related to her arthritis. She has no other arthritic symptoms and is on no medication other than insulin. Has anybody here or their children experienced arthritis related tailbone while in remission and with no other symptoms? Any advice? We are going to get a pelvic xray. > > > > > > > > Thanks, > > > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 Thanks. I am going to call and have it checked out... I have had sciatic pain for most of my life off and on. It seems to me to be more of the cyst area. I don't see any lumps or bumps but she has the pain so I have to get it checked out.. you're right. I will let you know what they say.... Thank you so much for responding....  ________________________________ From: bound for london <boundforlondon@...> Sent: Thu, January 27, 2011 4:55:03 AM Subject: Re: Riley tailbone pain  Hi , This is the area that is common for a Pilondal Cyst. You can find pictures and descriptions and some are pretty graphic. It can certainly be this because it is in the right area. Thin people can complain of pain when sitting on bleachers etc too just because they don't have any padding there. Another potential cause could be sciatica. Make an appointment with your pediatrician and see what happens. Pain in anyone isn't normal. Let us know what you find out. e, mom to " joe " 24 poly+ From: <mariamaul08@...> Subject: Re: Riley tailbone pain Date: Wednesday, January 26, 2011, 10:24 AM  e, This really strange..... my daughter (non RA) has been complaining off and on about her tailbone hurting and mentioned it again last night. She had a hard time getting off the floor and brought it up again. She said that she has a hard time sitting in the school seats and bleachers. I have a basic discription of the area, tell me if it is in the right place. It is just above where the " crack " of her buttocks is... and when I poked around there she didn't complain of too much pain but when she bent over slightly that hurt and when I touched the same area then she yelled out in pain. I can't see anything there, but I am no doc either. Let me know if I am in the ball park with this...... > > From: skyleysmom1 <skyley@...> > Subject: Riley tailbone pain > > Date: Tuesday, January 25, 2011, 3:44 PM > > > > > > > >  > > > > > > > > > > Hi, it has been a long time since I have posted here. Some of you may remember >us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 >and has been in clinical remission for about 4-5 years. Riley was diagnosed with >type 1 diabetes on March 18, 2009. She has been complaining of pain in her >tailbone for the past few months and her Endocrinologist asked her >Rheumatologist about it today and he said it might be related to her arthritis. >She has no other arthritic symptoms and is on no medication other than insulin. >Has anybody here or their children experienced arthritis related tailbone while >in remission and with no other symptoms? Any advice? We are going to get a >pelvic xray. > > > > Thanks, > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 There was nothing seen by the doc, it wasn't painful for her at this visit, so we plan to call back to be seen the day she feels the pain, and maybe there will be some swelling then.... I did read some where that until it really shows itself there isn't much that they can do anyway.... so we will just wait.... Thanks again, > > > > > > From: skyleysmom1 <skyley@> > > > Subject: Riley tailbone pain > > > > > > Date: Tuesday, January 25, 2011, 3:44 PM > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, it has been a long time since I have posted here. Some of you may remember > >us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 > >and has been in clinical remission for about 4-5 years. Riley was diagnosed with > >type 1 diabetes on March 18, 2009. She has been complaining of pain in her > >tailbone for the past few months and her Endocrinologist asked her > >Rheumatologist about it today and he said it might be related to her arthritis. > >She has no other arthritic symptoms and is on no medication other than insulin. > >Has anybody here or their children experienced arthritis related tailbone while > >in remission and with no other symptoms? Any advice? We are going to get a > >pelvic xray. > > > > > > > > > > > > Thanks, > > > > > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2011 Report Share Posted January 31, 2011 I guess the good news is that it was okay for now. Just keep an eye on it---my poor daughter's was horrible when it finally was treated so when ever someone mentions the possibility of it I feel I should respond and prevent it. Call it my motto to never let anyone else suffer like she did. Our ped was livid at the other profressionals and chewed them all out. Our rheumy called to apologize profusely afterwards. It was a very bad experience. Glad your daughter is feeling better. e, mom to 'joe' 24 poly+ From: <mariamaul08@...> Subject: Re: Riley tailbone pain Date: Sunday, January 30, 2011, 7:20 PM  There was nothing seen by the doc, it wasn't painful for her at this visit, so we plan to call back to be seen the day she feels the pain, and maybe there will be some swelling then.... I did read some where that until it really shows itself there isn't much that they can do anyway.... so we will just wait.... Thanks again, > > > > > > From: skyleysmom1 <skyley@> > > > Subject: Riley tailbone pain > > > > > > Date: Tuesday, January 25, 2011, 3:44 PM > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, it has been a long time since I have posted here. Some of you may remember > >us. My daughter Riley was diagnosed with poly JRA when she was 4. She is now 13 > >and has been in clinical remission for about 4-5 years. Riley was diagnosed with > >type 1 diabetes on March 18, 2009. She has been complaining of pain in her > >tailbone for the past few months and her Endocrinologist asked her > >Rheumatologist about it today and he said it might be related to her arthritis. > >She has no other arthritic symptoms and is on no medication other than insulin. > >Has anybody here or their children experienced arthritis related tailbone while > >in remission and with no other symptoms? Any advice? We are going to get a > >pelvic xray. > > > > > > > > > > > > Thanks, > > > > > > Ellie and Riley 13 poly jra and type 1 diabetes > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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