Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 How frustrating for you and your daughter. I'm curious has she ever seen an infectious disease person when in a flare. That is the only thing I can think of. There has to be some kind of answer or solution for her that it reoccurs at this time every year. Wish I had some great ideas for you. Another thought is taking her to the Mayo clinic for a full work up. I hope you get some answers and she feels better soon. e, mom to 'joe' 20 poly/lupus sonia1md <sonia1md@...> wrote: Hello All, I have been pretty hit and miss lately with posting but thought I'd give an update. Aundrea enjoyed and awesome summer and early fall. Rarely had any pain and was able to do all the things that she loves. Lots of bike rides, swimming, hiking etc. The school year started off so much better than last year. She wasn't having any absences and she was excited about making honor roll and totally enjoying her new 7th grade teachers. November came and the signs of joint pain returned along with fatigue. By December she has begun to miss lots of school. 3 days last week and hasn't been able to go at all this week. The joint pain has returned to her fingers, wrists, knees, ankles and toes. She is taking lots of hot baths, heat pad, and sleeping. Sore throat and swollen lymph nodes again. I have a 504 meeting planned for Monday morning. Aundrea was kind of depressed yesterday and angry about being in pain. She is adamant that she is done with drugs and said they have never helped and only make her feel worse. (same story for 5 years now) So, it leaves me at a quandry as to what to do. We can always do the the therapeutic options but of course that is unlikely to ever take away the flare. So, at this point I am just hoping that it wont be as long-lasting as it was last year. I know there are so many others that I have followed on this list that have children with similar issues and few answers. If anyone ever comes across a specialist that helps children who have chronic joint and muscle pain with limited inflammation please let me know. Also if anyone comes across other diagnosis/treatment considerations I would love to hear it. Blessings, (Aundrea age 12 systemic jra/gerd for lack of a more conclusive dx. this is the one that we stick with) --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Hi e, She hasn't been to an infectious disease specialist. I remember when she was just a year old and was hospitalized for recurring fevers of unknown origin and they had suggested and infectious disease specialist. We ended up moving and she seemed to improve. We thought at the time that she must have had allergies or something and that the move from louisiana to Illinois was somehow helpful to her. The other option of Mayo Clinic has always been what I have thought of trying as sort of my last resort. My sister went there when noone could figure out what was wrong with her. She presented with atypical chrones disease. Her bowl was nearly perforated when they did the surgery for the iliostomy. Mayo clinic found the anwers when noone else could. (aundrea 12 systemic jra/gerd)- -- In , bound for london <boundforlondon@...> wrote: > > How frustrating for you and your daughter. I'm curious has she ever seen an infectious disease person when in a flare. That is the only thing I can think of. There has to be some kind of answer or solution for her that it reoccurs at this time every year. Wish I had some great ideas for you. Another thought is taking her to the Mayo clinic for a full work up. I hope you get some answers and she feels better soon. > > e, mom to 'joe' 20 poly/lupus > > sonia1md <sonia1md@...> wrote: Hello All, > > I have been pretty hit and miss lately with posting but thought I'd > give an update. > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > pain and was able to do all the things that she loves. Lots of bike > rides, swimming, hiking etc. > > The school year started off so much better than last year. She > wasn't having any absences and she was excited about making honor > roll and totally enjoying her new 7th grade teachers. > > November came and the signs of joint pain returned along with > fatigue. By December she has begun to miss lots of school. 3 days > last week and hasn't been able to go at all this week. The joint > pain has returned to her fingers, wrists, knees, ankles and toes. > She is taking lots of hot baths, heat pad, and sleeping. Sore throat > and swollen lymph nodes again. > > I have a 504 meeting planned for Monday morning. Aundrea was kind of > depressed yesterday and angry about being in pain. She is adamant > that she is done with drugs and said they have never helped and only > make her feel worse. (same story for 5 years now) > > So, it leaves me at a quandry as to what to do. We can always do the > the therapeutic options but of course that is unlikely to ever take > away the flare. So, at this point I am just hoping that it wont be > as long-lasting as it was last year. > > I know there are so many others that I have followed on this list > that have children with similar issues and few answers. If anyone > ever comes across a specialist that helps children who have chronic > joint and muscle pain with limited inflammation please let me know. > Also if anyone comes across other diagnosis/treatment considerations > I would love to hear it. > > Blessings, > > (Aundrea age 12 systemic jra/gerd for lack of a more conclusive > dx. this is the one that we stick with) > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 - I too have lax in my posting. What is Aundrea taking these days? Has you doctor talked with you about Orencia - our Rhuemy says it has been really helpful in systemics who don't respond to other drugs. I hope she feels better soon. Sandi Ken Hunter (9 Systemic) **************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 I'm so sorry to hear that Aundrea is flaring. I wish that someone would take the time to definitively diagnose her. I always wonder how she would do on Enbrel or the like..it sure would be interesting to find out. Please send her gentle hugs from us (in cold, icey Indiana!) and Rob 18 JAS update on Aundrea > Hello All, > > I have been pretty hit and miss lately with posting but thought > I'd > give an update. > > Aundrea enjoyed and awesome summer and early fall. Rarely > had any > pain and was able to do all the things that she loves. > Lots of bike > rides, swimming, hiking etc. > > The school year started off so much better than last year. > She > wasn't having any absences and she was excited about making > honor > roll and totally enjoying her new 7th grade teachers. > > November came and the signs of joint pain returned along with > fatigue. By December she has begun to miss lots of > school. 3 days > last week and hasn't been able to go at all this week. The > joint > pain has returned to her fingers, wrists, knees, ankles and > toes. > She is taking lots of hot baths, heat pad, and sleeping. > Sore throat > and swollen lymph nodes again. > > I have a 504 meeting planned for Monday morning. Aundrea > was kind of > depressed yesterday and angry about being in pain. She is > adamant > that she is done with drugs and said they have never helped and > only > make her feel worse. (same story for 5 years now) > > So, it leaves me at a quandry as to what to do. We can always do > the > the therapeutic options but of course that is unlikely to ever > take > away the flare. So, at this point I am just hoping that it > wont be > as long-lasting as it was last year. > > I know there are so many others that I have followed on this > list > that have children with similar issues and few answers. If > anyone > ever comes across a specialist that helps children who have > chronic > joint and muscle pain with limited inflammation please let me > know. > Also if anyone comes across other diagnosis/treatment > considerations > I would love to hear it. > > Blessings, > > (Aundrea age 12 systemic jra/gerd for lack of a more > conclusive > dx. this is the one that we stick with) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 : I feel so badly for Aundrea. Hope your school meeting next week goes well. Do you still have the option of home tutoring in place for her? Maybe a couple of weeks of rest at home would help greatly. Maybe we could take our girls to Mayo together. They are so very much the same in the way they present. Maybe together we could get them the help they both need! Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) update on Aundrea Hello All, I have been pretty hit and miss lately with posting but thought I'd give an update. Aundrea enjoyed and awesome summer and early fall. Rarely had any pain and was able to do all the things that she loves. Lots of bike rides, swimming, hiking etc. The school year started off so much better than last year. She wasn't having any absences and she was excited about making honor roll and totally enjoying her new 7th grade teachers. November came and the signs of joint pain returned along with fatigue. By December she has begun to miss lots of school. 3 days last week and hasn't been able to go at all this week. The joint pain has returned to her fingers, wrists, knees, ankles and toes. She is taking lots of hot baths, heat pad, and sleeping. Sore throat and swollen lymph nodes again. I have a 504 meeting planned for Monday morning. Aundrea was kind of depressed yesterday and angry about being in pain. She is adamant that she is done with drugs and said they have never helped and only make her feel worse. (same story for 5 years now) So, it leaves me at a quandry as to what to do. We can always do the the therapeutic options but of course that is unlikely to ever take away the flare. So, at this point I am just hoping that it wont be as long-lasting as it was last year. I know there are so many others that I have followed on this list that have children with similar issues and few answers. If anyone ever comes across a specialist that helps children who have chronic joint and muscle pain with limited inflammation please let me know. Also if anyone comes across other diagnosis/treatment considerations I would love to hear it. Blessings, (Aundrea age 12 systemic jra/gerd for lack of a more conclusive dx. this is the one that we stick with) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 -, Im sorry Drea is once again struggling. It alwasy seems to hit her this time of year. How frustating for her and it breaks my heart to hear her so down. Nick gets the same way. If hes feeling great, he doesnt want his meds because hes 'cured " or when hes flaring his mad at the meds because they " dont work anyhows " breaks my heart. I wish you had some answers, a definate, a plan of action and knowing exactly what you are delaing with. I pray 2008 is a better year for all the kids and those struggling with DX get an answer, whatever that may be and the kids have painfree days! love to all Helen and (10,systemic) -- In , " sonia1md " <sonia1md@...> wrote: > > Hello All, > > I have been pretty hit and miss lately with posting but thought I'd > give an update. > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > pain and was able to do all the things that she loves. Lots of bike > rides, swimming, hiking etc. > > The school year started off so much better than last year. She > wasn't having any absences and she was excited about making honor > roll and totally enjoying her new 7th grade teachers. > > November came and the signs of joint pain returned along with > fatigue. By December she has begun to miss lots of school. 3 days > last week and hasn't been able to go at all this week. The joint > pain has returned to her fingers, wrists, knees, ankles and toes. > She is taking lots of hot baths, heat pad, and sleeping. Sore throat > and swollen lymph nodes again. > > I have a 504 meeting planned for Monday morning. Aundrea was kind of > depressed yesterday and angry about being in pain. She is adamant > that she is done with drugs and said they have never helped and only > make her feel worse. (same story for 5 years now) > > So, it leaves me at a quandry as to what to do. We can always do the > the therapeutic options but of course that is unlikely to ever take > away the flare. So, at this point I am just hoping that it wont be > as long-lasting as it was last year. > > I know there are so many others that I have followed on this list > that have children with similar issues and few answers. If anyone > ever comes across a specialist that helps children who have chronic > joint and muscle pain with limited inflammation please let me know. > Also if anyone comes across other diagnosis/treatment considerations > I would love to hear it. > > Blessings, > > (Aundrea age 12 systemic jra/gerd for lack of a more conclusive > dx. this is the one that we stick with) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Hi , She was feeling better yesterday and was able to go to her school dance. She was pretty stiff by the time she got home but had such a good time. Of course now she is on her marathon of sleeping but that's ok. Enbrel might be a consideration. It seems to work for a lot of people. We will see how things go and just take it one day at a time I guess. Is Rob home yet for his Christmas break? (aundrea 12 systemic jra/gerd)- -- In , snooksmama@... wrote: > > > I'm so sorry to hear that Aundrea is flaring. I wish that someone would take the time to definitively diagnose her. I always wonder how she would do on Enbrel or the like..it sure would be interesting to find out. > Please send her gentle hugs from us (in cold, icey Indiana!) > and Rob 18 JAS > > update on Aundrea > > > > Hello All, > > > > I have been pretty hit and miss lately with posting but thought > > I'd > > give an update. > > > > Aundrea enjoyed and awesome summer and early fall. Rarely > > had any > > pain and was able to do all the things that she loves. > > Lots of bike > > rides, swimming, hiking etc. > > > > The school year started off so much better than last year. > > She > > wasn't having any absences and she was excited about making > > honor > > roll and totally enjoying her new 7th grade teachers. > > > > November came and the signs of joint pain returned along with > > fatigue. By December she has begun to miss lots of > > school. 3 days > > last week and hasn't been able to go at all this week. The > > joint > > pain has returned to her fingers, wrists, knees, ankles and > > toes. > > She is taking lots of hot baths, heat pad, and sleeping. > > Sore throat > > and swollen lymph nodes again. > > > > I have a 504 meeting planned for Monday morning. Aundrea > > was kind of > > depressed yesterday and angry about being in pain. She is > > adamant > > that she is done with drugs and said they have never helped and > > only > > make her feel worse. (same story for 5 years now) > > > > So, it leaves me at a quandry as to what to do. We can always do > > the > > the therapeutic options but of course that is unlikely to ever > > take > > away the flare. So, at this point I am just hoping that it > > wont be > > as long-lasting as it was last year. > > > > I know there are so many others that I have followed on this > > list > > that have children with similar issues and few answers. If > > anyone > > ever comes across a specialist that helps children who have > > chronic > > joint and muscle pain with limited inflammation please let me > > know. > > Also if anyone comes across other diagnosis/treatment > > considerations > > I would love to hear it. > > > > Blessings, > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > conclusive > > dx. this is the one that we stick with) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Hi Beth, Drea only has 2 full days next week and then 2 half days and then its chirstmas break for a couple of weeks. Hopefully, she will be able to return rested and doing much better. I would have to restart the whole home-tutor thing. You have to see the dr. and then get a letter to give to the district explaining the need. I wasn't to impressed with how things went last year with it. The tutor was only with her an hour a day for 3 or 4 days a week and a good portion of that time she just seemed to chat with drea. She only covered 1 subject and the other ones just went by the wayside. I would probably just home tutor her myself if needed. Now that I work full-time from home it would be much easier for me to do. Do you think that you might seriously consider taking Hannah to Mayo? (aundrea 12 systemic jra/gerd) > > : > I feel so badly for Aundrea. Hope your school meeting next week goes well. Do you still have the option of home tutoring in place for her? Maybe a couple of weeks of rest at home would help greatly. > > Maybe we could take our girls to Mayo together. They are so very much the same in the way they present. Maybe together we could get them the help they both need! > > Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines > > Sending prayers & happy thoughts, > Beth :-) > > > > update on Aundrea > > Hello All, > > I have been pretty hit and miss lately with posting but thought I'd > give an update. > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > pain and was able to do all the things that she loves. Lots of bike > rides, swimming, hiking etc. > > The school year started off so much better than last year. She > wasn't having any absences and she was excited about making honor > roll and totally enjoying her new 7th grade teachers. > > November came and the signs of joint pain returned along with > fatigue. By December she has begun to miss lots of school. 3 days > last week and hasn't been able to go at all this week. The joint > pain has returned to her fingers, wrists, knees, ankles and toes. > She is taking lots of hot baths, heat pad, and sleeping. Sore throat > and swollen lymph nodes again. > > I have a 504 meeting planned for Monday morning. Aundrea was kind of > depressed yesterday and angry about being in pain. She is adamant > that she is done with drugs and said they have never helped and only > make her feel worse. (same story for 5 years now) > > So, it leaves me at a quandry as to what to do. We can always do the > the therapeutic options but of course that is unlikely to ever take > away the flare. So, at this point I am just hoping that it wont be > as long-lasting as it was last year. > > I know there are so many others that I have followed on this list > that have children with similar issues and few answers. If anyone > ever comes across a specialist that helps children who have chronic > joint and muscle pain with limited inflammation please let me know. > Also if anyone comes across other diagnosis/treatment considerations > I would love to hear it. > > Blessings, > > (Aundrea age 12 systemic jra/gerd for lack of a more conclusive > dx. this is the one that we stick with) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Hi sandi, She isn't on anything right now. We took her of mtx last spring I believe. She takes tylenol for pain..(no longer able to take NSAIDS) I haven't heard of Orencia. I will google it. (aundrea 12 systemic jra/gerd)- -- In , deerhuntert6@... wrote: > > - I too have lax in my posting. What is Aundrea taking these days? > Has you doctor talked with you about Orencia - our Rhuemy says it has been > really helpful in systemics who don't respond to other drugs. I hope she feels > better soon. Sandi Ken Hunter (9 Systemic) > > > > **************************************See AOL's top rated recipes > (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Thanks Helen. Thanks for your supportive words. It does get frustrating..same old roller coaster ride. But it could be so much worse. I am thankful that at this point her joints still seem good and she hasn't had any loss of range of motion. Her issues appear to be primarily pain related and as far as we have been told its not causing her any permanent damage due to the fact that she doesn't have much if any inflammation. How is Nick doing these days. Is the increased remicade helping. I hope so since I read that you are now maxed out on this dose. What other options does that leave you? sonia (aundrea 12 systemic jra/gerd)- -- In , " hburger64 " <hburger64@...> wrote: > > -, > > Im sorry Drea is once again struggling. It alwasy seems to hit her > this time of year. How frustating for her and it breaks my heart to > hear her so down. Nick gets the same way. If hes feeling great, he > doesnt want his meds because hes 'cured " or when hes flaring his mad > at the meds because they " dont work anyhows " breaks my heart. > > I wish you had some answers, a definate, a plan of action and knowing > exactly what you are delaing with. I pray 2008 is a better year for > all the kids and those struggling with DX get an answer, whatever > that may be and the kids have painfree days! > > love to all > Helen and (10,systemic) > > > -- In , " sonia1md " <sonia1md@> wrote: > > > > Hello All, > > > > I have been pretty hit and miss lately with posting but thought I'd > > give an update. > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > > pain and was able to do all the things that she loves. Lots of > bike > > rides, swimming, hiking etc. > > > > The school year started off so much better than last year. She > > wasn't having any absences and she was excited about making honor > > roll and totally enjoying her new 7th grade teachers. > > > > November came and the signs of joint pain returned along with > > fatigue. By December she has begun to miss lots of school. 3 days > > last week and hasn't been able to go at all this week. The joint > > pain has returned to her fingers, wrists, knees, ankles and toes. > > She is taking lots of hot baths, heat pad, and sleeping. Sore > throat > > and swollen lymph nodes again. > > > > I have a 504 meeting planned for Monday morning. Aundrea was kind > of > > depressed yesterday and angry about being in pain. She is adamant > > that she is done with drugs and said they have never helped and > only > > make her feel worse. (same story for 5 years now) > > > > So, it leaves me at a quandry as to what to do. We can always do > the > > the therapeutic options but of course that is unlikely to ever take > > away the flare. So, at this point I am just hoping that it wont be > > as long-lasting as it was last year. > > > > I know there are so many others that I have followed on this list > > that have children with similar issues and few answers. If anyone > > ever comes across a specialist that helps children who have chronic > > joint and muscle pain with limited inflammation please let me > know. > > Also if anyone comes across other diagnosis/treatment > considerations > > I would love to hear it. > > > > Blessings, > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > conclusive > > dx. this is the one that we stick with) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 I am so glad that she was able to go to the dance. I hope that this flare passes quickly and she is able to enjoy Christmas break. Rob will be home on Monday. He has one more final that day. I sure hope he cleans out his fridge before he comes home!! and Rob 18 JAS update on Aundrea > > > > > > > Hello All, > > > > > > I have been pretty hit and miss lately with posting but > thought > > > I'd > > > give an update. > > > > > > Aundrea enjoyed and awesome summer and early fall. > Rarely > > > had any > > > pain and was able to do all the things that she loves. > > > Lots of bike > > > rides, swimming, hiking etc. > > > > > > The school year started off so much better than last > year. > > > She > > > wasn't having any absences and she was excited about making > > > honor > > > roll and totally enjoying her new 7th grade teachers. > > > > > > November came and the signs of joint pain returned along > with > > > fatigue. By December she has begun to miss lots of > > > school. 3 days > > > last week and hasn't been able to go at all this week. > The > > > joint > > > pain has returned to her fingers, wrists, knees, ankles and > > > toes. > > > She is taking lots of hot baths, heat pad, and > sleeping. > > > Sore throat > > > and swollen lymph nodes again. > > > > > > I have a 504 meeting planned for Monday morning. > Aundrea > > > was kind of > > > depressed yesterday and angry about being in pain. She > is > > > adamant > > > that she is done with drugs and said they have never helped > and > > > only > > > make her feel worse. (same story for 5 years now) > > > > > > So, it leaves me at a quandry as to what to do. We can > always do > > > the > > > the therapeutic options but of course that is unlikely to > ever > > > take > > > away the flare. So, at this point I am just hoping > that it > > > wont be > > > as long-lasting as it was last year. > > > > > > I know there are so many others that I have followed on this > > > list > > > that have children with similar issues and few > answers. If > > > anyone > > > ever comes across a specialist that helps children who have > > > chronic > > > joint and muscle pain with limited inflammation please let > me > > > know. > > > Also if anyone comes across other diagnosis/treatment > > > considerations > > > I would love to hear it. > > > > > > Blessings, > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > > conclusive > > > dx. this is the one that we stick with) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 We have talked about it, even our ped mentioned it a few months back. It's a hard decision. I really think unless she is in significant pain, I'm just not sure what they will see. The good thing about Mayo is that they look at all the child's issues and for Hannah that would include her asthma; gerd; & probably her migraines in addition to her joints. We'll wait and see what the New Year brings. Right now we are just waiting for break so she can rest and take it easy. Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) update on Aundrea > > Hello All, > > I have been pretty hit and miss lately with posting but thought I'd > give an update. > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > pain and was able to do all the things that she loves. Lots of bike > rides, swimming, hiking etc. > > The school year started off so much better than last year. She > wasn't having any absences and she was excited about making honor > roll and totally enjoying her new 7th grade teachers. > > November came and the signs of joint pain returned along with > fatigue. By December she has begun to miss lots of school. 3 days > last week and hasn't been able to go at all this week. The joint > pain has returned to her fingers, wrists, knees, ankles and toes. > She is taking lots of hot baths, heat pad, and sleeping. Sore throat > and swollen lymph nodes again. > > I have a 504 meeting planned for Monday morning. Aundrea was kind of > depressed yesterday and angry about being in pain. She is adamant > that she is done with drugs and said they have never helped and only > make her feel worse. (same story for 5 years now) > > So, it leaves me at a quandry as to what to do. We can always do the > the therapeutic options but of course that is unlikely to ever take > away the flare. So, at this point I am just hoping that it wont be > as long-lasting as it was last year. > > I know there are so many others that I have followed on this list > that have children with similar issues and few answers. If anyone > ever comes across a specialist that helps children who have chronic > joint and muscle pain with limited inflammation please let me know. > Also if anyone comes across other diagnosis/treatment considerations > I would love to hear it. > > Blessings, > > (Aundrea age 12 systemic jra/gerd for lack of a more conclusive > dx. this is the one that we stick with) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 Gosh, I wish someone clean out my frige its a mess in there. In fact I'm wondering if on that bottom shelf that noone ever uses there still sits thanksgiving leftovers. I am getting as bas as grandma! lol I hope you have a wonderful christmas break with your boy and that you all enjoy some healthy days. Aundrea danced the night away and did have lots of fun. She said by the last 30 minutes her joints were killing her and she had to sit out but she partied til she dropped. She is hurting right now. Her fingers, wrists and knees keep popping. She has gone to soak in a hotbath. I hope the 504 mtg goes well. Truthfully, I am not even sure what I want to tell them. I guess perhaps I will just share with them about her struggles with flares and the importance of them doing their job in getting her the homework when she is absent. That has been our greatest struggle. She misses several days and I request homework every day but noone submits to the front office so she just keeps falling further behind which really frustrates her. It's just not near as easy in jr high. (aundrea 12 systemic jra/gerd- -- In , snooksmama@... wrote: > > > I am so glad that she was able to go to the dance. I hope that this flare passes quickly and she is able to enjoy Christmas break. > Rob will be home on Monday. He has one more final that day. I sure hope he cleans out his fridge before he comes home!! > and Rob 18 JAS > > update on Aundrea > > > > > > > > > > Hello All, > > > > > > > > I have been pretty hit and miss lately with posting but > > thought > > > > I'd > > > > give an update. > > > > > > > > Aundrea enjoyed and awesome summer and early fall. > > Rarely > > > > had any > > > > pain and was able to do all the things that she loves. > > > > Lots of bike > > > > rides, swimming, hiking etc. > > > > > > > > The school year started off so much better than last > > year. > > > > She > > > > wasn't having any absences and she was excited about making > > > > honor > > > > roll and totally enjoying her new 7th grade teachers. > > > > > > > > November came and the signs of joint pain returned along > > with > > > > fatigue. By December she has begun to miss lots of > > > > school. 3 days > > > > last week and hasn't been able to go at all this week. > > The > > > > joint > > > > pain has returned to her fingers, wrists, knees, ankles and > > > > toes. > > > > She is taking lots of hot baths, heat pad, and > > sleeping. > > > > Sore throat > > > > and swollen lymph nodes again. > > > > > > > > I have a 504 meeting planned for Monday morning. > > Aundrea > > > > was kind of > > > > depressed yesterday and angry about being in pain. She > > is > > > > adamant > > > > that she is done with drugs and said they have never helped > > and > > > > only > > > > make her feel worse. (same story for 5 years now) > > > > > > > > So, it leaves me at a quandry as to what to do. We can > > always do > > > > the > > > > the therapeutic options but of course that is unlikely to > > ever > > > > take > > > > away the flare. So, at this point I am just hoping > > that it > > > > wont be > > > > as long-lasting as it was last year. > > > > > > > > I know there are so many others that I have followed on this > > > > list > > > > that have children with similar issues and few > > answers. If > > > > anyone > > > > ever comes across a specialist that helps children who have > > > > chronic > > > > joint and muscle pain with limited inflammation please let > > me > > > > know. > > > > Also if anyone comes across other diagnosis/treatment > > > > considerations > > > > I would love to hear it. > > > > > > > > Blessings, > > > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > > > conclusive > > > > dx. this is the one that we stick with) > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 Things aren't getting any easier yet with Aundrea. She has been running a temp of 101-103 since Sat. Her joints were so severe yesterday that I had to help her out of the tub/chair and with walking. She is very dizzy and her lymph nodes are still swollen. Today she has been coughing more. She may be dealing with a virus on top of the flare. Her systemic rash is back on her face and neck. Currently we are treating with tylenol/arthritis (she can't tolerate NSAIDS due to GERD). She has been using heat pads and I let her take a luke warm bath for her joints but don't want it to hot due to her temp. Hopefully, things will improve soon. Of course its the end of this semester and her teachers gave me all of the tests that she needs to do so that they can lock grades. We are trying to get it done but she mostly just wants to sleep. (aundrea 12 systemic jra/gerd) > > > > : > > I feel so badly for Aundrea. Hope your school meeting next week > goes well. Do you still have the option of home tutoring in place > for her? Maybe a couple of weeks of rest at home would help greatly. > > > > Maybe we could take our girls to Mayo together. They are so very > much the same in the way they present. Maybe together we could get > them the help they both need! > > > > Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines > > > > Sending prayers & happy thoughts, > > Beth :-) > > > > > > > > update on Aundrea > > > > Hello All, > > > > I have been pretty hit and miss lately with posting but thought I'd > > give an update. > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > > pain and was able to do all the things that she loves. Lots of bike > > rides, swimming, hiking etc. > > > > The school year started off so much better than last year. She > > wasn't having any absences and she was excited about making honor > > roll and totally enjoying her new 7th grade teachers. > > > > November came and the signs of joint pain returned along with > > fatigue. By December she has begun to miss lots of school. 3 days > > last week and hasn't been able to go at all this week. The joint > > pain has returned to her fingers, wrists, knees, ankles and toes. > > She is taking lots of hot baths, heat pad, and sleeping. Sore > throat > > and swollen lymph nodes again. > > > > I have a 504 meeting planned for Monday morning. Aundrea was kind > of > > depressed yesterday and angry about being in pain. She is adamant > > that she is done with drugs and said they have never helped and > only > > make her feel worse. (same story for 5 years now) > > > > So, it leaves me at a quandry as to what to do. We can always do > the > > the therapeutic options but of course that is unlikely to ever take > > away the flare. So, at this point I am just hoping that it wont be > > as long-lasting as it was last year. > > > > I know there are so many others that I have followed on this list > > that have children with similar issues and few answers. If anyone > > ever comes across a specialist that helps children who have chronic > > joint and muscle pain with limited inflammation please let me know. > > Also if anyone comes across other diagnosis/treatment > considerations > > I would love to hear it. > > > > Blessings, > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > conclusive > > dx. this is the one that we stick with) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 Sorry to hear of Aundrea's illness. I have not been able to keep up with all the posts, but after catching this one I was wondering if she had been tested for mono? If her throat is very sore, that or strep could be a possibility. This sounds like how was feeling when he had mono. Just a thought, I'll keep her in my prayers. Michele ( 20, spondy) ________________________________ From: [mailto: ] On Behalf Of sonia1md Sent: Tuesday, December 18, 2007 12:13 PM Subject: Re: update on Aundrea Things aren't getting any easier yet with Aundrea. She has been running a temp of 101-103 since Sat. Her joints were so severe yesterday that I had to help her out of the tub/chair and with walking. She is very dizzy and her lymph nodes are still swollen. Today she has been coughing more. She may be dealing with a virus on top of the flare. Her systemic rash is back on her face and neck. Currently we are treating with tylenol/arthritis (she can't tolerate NSAIDS due to GERD). She has been using heat pads and I let her take a luke warm bath for her joints but don't want it to hot due to her temp. Hopefully, things will improve soon. Of course its the end of this semester and her teachers gave me all of the tests that she needs to do so that they can lock grades. We are trying to get it done but she mostly just wants to sleep. (aundrea 12 systemic jra/gerd) > > > > : > > I feel so badly for Aundrea. Hope your school meeting next week > goes well. Do you still have the option of home tutoring in place > for her? Maybe a couple of weeks of rest at home would help greatly. > > > > Maybe we could take our girls to Mayo together. They are so very > much the same in the way they present. Maybe together we could get > them the help they both need! > > > > Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines > > > > Sending prayers & happy thoughts, > > Beth :-) > > > > > > > > update on Aundrea > > > > Hello All, > > > > I have been pretty hit and miss lately with posting but thought I'd > > give an update. > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > > pain and was able to do all the things that she loves. Lots of bike > > rides, swimming, hiking etc. > > > > The school year started off so much better than last year. She > > wasn't having any absences and she was excited about making honor > > roll and totally enjoying her new 7th grade teachers. > > > > November came and the signs of joint pain returned along with > > fatigue. By December she has begun to miss lots of school. 3 days > > last week and hasn't been able to go at all this week. The joint > > pain has returned to her fingers, wrists, knees, ankles and toes. > > She is taking lots of hot baths, heat pad, and sleeping. Sore > throat > > and swollen lymph nodes again. > > > > I have a 504 meeting planned for Monday morning. Aundrea was kind > of > > depressed yesterday and angry about being in pain. She is adamant > > that she is done with drugs and said they have never helped and > only > > make her feel worse. (same story for 5 years now) > > > > So, it leaves me at a quandry as to what to do. We can always do > the > > the therapeutic options but of course that is unlikely to ever take > > away the flare. So, at this point I am just hoping that it wont be > > as long-lasting as it was last year. > > > > I know there are so many others that I have followed on this list > > that have children with similar issues and few answers. If anyone > > ever comes across a specialist that helps children who have chronic > > joint and muscle pain with limited inflammation please let me know. > > Also if anyone comes across other diagnosis/treatment > considerations > > I would love to hear it. > > > > Blessings, > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > conclusive > > dx. this is the one that we stick with) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 I was thinking if the fever doesn't break by tomorrow then I should take her in and have some lab work done. It seems as though most viruses tend to run their course within 24-28 hours. She started running a high fever on Sunday evening. She was having sore throat and joint pain prior to that so maybe there is something else going on. I will ask about mono if I have to take her in. I know there has been lots of stuff going around at school. Her joints have been causing her severe pain and she said it hurts if her arms are even touched. Not much of an appetite either. She is getting some juice down. (aundrea 12 systemic jra/gerd) > > > > > > : > > > I feel so badly for Aundrea. Hope your school meeting next week > > goes well. Do you still have the option of home tutoring in place > > for her? Maybe a couple of weeks of rest at home would help greatly. > > > > > > Maybe we could take our girls to Mayo together. They are so very > > much the same in the way they present. Maybe together we could get > > them the help they both need! > > > > > > Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines > > > > > > Sending prayers & happy thoughts, > > > Beth :-) > > > > > > > > > > > > update on Aundrea > > > > > > Hello All, > > > > > > I have been pretty hit and miss lately with posting but thought > I'd > > > give an update. > > > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > > > pain and was able to do all the things that she loves. Lots of > bike > > > rides, swimming, hiking etc. > > > > > > The school year started off so much better than last year. She > > > wasn't having any absences and she was excited about making honor > > > roll and totally enjoying her new 7th grade teachers. > > > > > > November came and the signs of joint pain returned along with > > > fatigue. By December she has begun to miss lots of school. 3 days > > > last week and hasn't been able to go at all this week. The joint > > > pain has returned to her fingers, wrists, knees, ankles and toes. > > > She is taking lots of hot baths, heat pad, and sleeping. Sore > > throat > > > and swollen lymph nodes again. > > > > > > I have a 504 meeting planned for Monday morning. Aundrea was kind > > of > > > depressed yesterday and angry about being in pain. She is adamant > > > that she is done with drugs and said they have never helped and > > only > > > make her feel worse. (same story for 5 years now) > > > > > > So, it leaves me at a quandry as to what to do. We can always do > > the > > > the therapeutic options but of course that is unlikely to ever > take > > > away the flare. So, at this point I am just hoping that it wont > be > > > as long-lasting as it was last year. > > > > > > I know there are so many others that I have followed on this list > > > that have children with similar issues and few answers. If anyone > > > ever comes across a specialist that helps children who have > chronic > > > joint and muscle pain with limited inflammation please let me > know. > > > Also if anyone comes across other diagnosis/treatment > > considerations > > > I would love to hear it. > > > > > > Blessings, > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > conclusive > > > dx. this is the one that we stick with) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 Aubrey, had a viral thing. Took her down for a few days. Praying no one else gets this ugly monster..>Terri update on Aundrea > > > > > > Hello All, > > > > > > I have been pretty hit and miss lately with posting but thought > I'd > > > give an update. > > > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > > > pain and was able to do all the things that she loves. Lots of > bike > > > rides, swimming, hiking etc. > > > > > > The school year started off so much better than last year. She > > > wasn't having any absences and she was excited about making honor > > > roll and totally enjoying her new 7th grade teachers. > > > > > > November came and the signs of joint pain returned along with > > > fatigue. By December she has begun to miss lots of school. 3 days > > > last week and hasn't been able to go at all this week. The joint > > > pain has returned to her fingers, wrists, knees, ankles and toes. > > > She is taking lots of hot baths, heat pad, and sleeping. Sore > > throat > > > and swollen lymph nodes again. > > > > > > I have a 504 meeting planned for Monday morning. Aundrea was kind > > of > > > depressed yesterday and angry about being in pain. She is adamant > > > that she is done with drugs and said they have never helped and > > only > > > make her feel worse. (same story for 5 years now) > > > > > > So, it leaves me at a quandry as to what to do. We can always do > > the > > > the therapeutic options but of course that is unlikely to ever > take > > > away the flare. So, at this point I am just hoping that it wont > be > > > as long-lasting as it was last year. > > > > > > I know there are so many others that I have followed on this list > > > that have children with similar issues and few answers. If anyone > > > ever comes across a specialist that helps children who have > chronic > > > joint and muscle pain with limited inflammation please let me > know. > > > Also if anyone comes across other diagnosis/treatment > > considerations > > > I would love to hear it. > > > > > > Blessings, > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > conclusive > > > dx. this is the one that we stick with) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 Oh , I am so sorry to hear this. I had hoped that you were letting us know that things were improving greatly. I hope she turns a corner really soon. Let us know what you decide and how things turn out. If you can go to Mayo or Infectious Disease that would be wonderful. It sounds like what she needs and if you can go in the fall to late winter when she flairs. e sonia1md <sonia1md@...> wrote: I was thinking if the fever doesn't break by tomorrow then I should take her in and have some lab work done. It seems as though most viruses tend to run their course within 24-28 hours. She started running a high fever on Sunday evening. She was having sore throat and joint pain prior to that so maybe there is something else going on. I will ask about mono if I have to take her in. I know there has been lots of stuff going around at school. Her joints have been causing her severe pain and she said it hurts if her arms are even touched. Not much of an appetite either. She is getting some juice down. (aundrea 12 systemic jra/gerd) > > > > > > : > > > I feel so badly for Aundrea. Hope your school meeting next week > > goes well. Do you still have the option of home tutoring in place > > for her? Maybe a couple of weeks of rest at home would help greatly. > > > > > > Maybe we could take our girls to Mayo together. They are so very > > much the same in the way they present. Maybe together we could get > > them the help they both need! > > > > > > Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines > > > > > > Sending prayers & happy thoughts, > > > Beth :-) > > > > > > > > > > > > update on Aundrea > > > > > > Hello All, > > > > > > I have been pretty hit and miss lately with posting but thought > I'd > > > give an update. > > > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > > > pain and was able to do all the things that she loves. Lots of > bike > > > rides, swimming, hiking etc. > > > > > > The school year started off so much better than last year. She > > > wasn't having any absences and she was excited about making honor > > > roll and totally enjoying her new 7th grade teachers. > > > > > > November came and the signs of joint pain returned along with > > > fatigue. By December she has begun to miss lots of school. 3 days > > > last week and hasn't been able to go at all this week. The joint > > > pain has returned to her fingers, wrists, knees, ankles and toes. > > > She is taking lots of hot baths, heat pad, and sleeping. Sore > > throat > > > and swollen lymph nodes again. > > > > > > I have a 504 meeting planned for Monday morning. Aundrea was kind > > of > > > depressed yesterday and angry about being in pain. She is adamant > > > that she is done with drugs and said they have never helped and > > only > > > make her feel worse. (same story for 5 years now) > > > > > > So, it leaves me at a quandry as to what to do. We can always do > > the > > > the therapeutic options but of course that is unlikely to ever > take > > > away the flare. So, at this point I am just hoping that it wont > be > > > as long-lasting as it was last year. > > > > > > I know there are so many others that I have followed on this list > > > that have children with similar issues and few answers. If anyone > > > ever comes across a specialist that helps children who have > chronic > > > joint and muscle pain with limited inflammation please let me > know. > > > Also if anyone comes across other diagnosis/treatment > > considerations > > > I would love to hear it. > > > > > > Blessings, > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > conclusive > > > dx. this is the one that we stick with) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2007 Report Share Posted December 19, 2007 : How is Drea doing? Sending prayers & happy thoughts, Beth :-) update on Aundrea > > > > > > Hello All, > > > > > > I have been pretty hit and miss lately with posting but thought > I'd > > > give an update. > > > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had any > > > pain and was able to do all the things that she loves. Lots of > bike > > > rides, swimming, hiking etc. > > > > > > The school year started off so much better than last year. She > > > wasn't having any absences and she was excited about making honor > > > roll and totally enjoying her new 7th grade teachers. > > > > > > November came and the signs of joint pain returned along with > > > fatigue. By December she has begun to miss lots of school. 3 days > > > last week and hasn't been able to go at all this week. The joint > > > pain has returned to her fingers, wrists, knees, ankles and toes. > > > She is taking lots of hot baths, heat pad, and sleeping. Sore > > throat > > > and swollen lymph nodes again. > > > > > > I have a 504 meeting planned for Monday morning. Aundrea was kind > > of > > > depressed yesterday and angry about being in pain. She is adamant > > > that she is done with drugs and said they have never helped and > > only > > > make her feel worse. (same story for 5 years now) > > > > > > So, it leaves me at a quandry as to what to do. We can always do > > the > > > the therapeutic options but of course that is unlikely to ever > take > > > away the flare. So, at this point I am just hoping that it wont > be > > > as long-lasting as it was last year. > > > > > > I know there are so many others that I have followed on this list > > > that have children with similar issues and few answers. If anyone > > > ever comes across a specialist that helps children who have > chronic > > > joint and muscle pain with limited inflammation please let me > know. > > > Also if anyone comes across other diagnosis/treatment > > considerations > > > I would love to hear it. > > > > > > Blessings, > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > conclusive > > > dx. this is the one that we stick with) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2007 Report Share Posted December 19, 2007 Hi Beth, Aundrea seems to be doing better this evening. She still ran a fever all day between 100-102 but her joints aren't hurting nearly as bad and her energy is returning. She wants to go to school tomorrow. She has been coughing quite a bit. I will see what morning brings. If the fever is down I might let her go for an hour or two. It's their last day of school before Christmas break. By the way have you ever tried arthritis tylenol for Hannah or yourself? Aundrea seemed to notice some improvement with her joint pain and it did bring the fever down a degree or so. I received your christmas card in the mail today. It was such a pleasant surprise. I loved all the pictures. You have a beautiful family! (aundrea 12 systemic jra/gerd)- -- In , Beth Yohnk <yohnkmom@...> wrote: > > : > How is Drea doing? > > Sending prayers & happy thoughts, > Beth :-) > > > > update on Aundrea > > > > > > > > Hello All, > > > > > > > > I have been pretty hit and miss lately with posting but thought > > I'd > > > > give an update. > > > > > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had > any > > > > pain and was able to do all the things that she loves. Lots of > > bike > > > > rides, swimming, hiking etc. > > > > > > > > The school year started off so much better than last year. She > > > > wasn't having any absences and she was excited about making > honor > > > > roll and totally enjoying her new 7th grade teachers. > > > > > > > > November came and the signs of joint pain returned along with > > > > fatigue. By December she has begun to miss lots of school. 3 > days > > > > last week and hasn't been able to go at all this week. The > joint > > > > pain has returned to her fingers, wrists, knees, ankles and > toes. > > > > She is taking lots of hot baths, heat pad, and sleeping. Sore > > > throat > > > > and swollen lymph nodes again. > > > > > > > > I have a 504 meeting planned for Monday morning. Aundrea was > kind > > > of > > > > depressed yesterday and angry about being in pain. She is > adamant > > > > that she is done with drugs and said they have never helped and > > > only > > > > make her feel worse. (same story for 5 years now) > > > > > > > > So, it leaves me at a quandry as to what to do. We can always > do > > > the > > > > the therapeutic options but of course that is unlikely to ever > > take > > > > away the flare. So, at this point I am just hoping that it wont > > be > > > > as long-lasting as it was last year. > > > > > > > > I know there are so many others that I have followed on this > list > > > > that have children with similar issues and few answers. If > anyone > > > > ever comes across a specialist that helps children who have > > chronic > > > > joint and muscle pain with limited inflammation please let me > > know. > > > > Also if anyone comes across other diagnosis/treatment > > > considerations > > > > I would love to hear it. > > > > > > > > Blessings, > > > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > > conclusive > > > > dx. this is the one that we stick with) > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2007 Report Share Posted December 20, 2007 Hi : I hope she was able to make school today. Let's hope a nice long break does the trick for her. I use Tylenol Arthritis along with my other med that I am prescribed. I was told the dose is too high for Hannah. She's only 80 lbs. I love it and use it almost daily. It's not supposed to be harsh on the stomach and it works quite well for me. I'm glad you received your card. I was hoping that was your current address. And thank you for the compliment! Beth & Hannah, 11, unspecified arhtritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) update on Aundrea > > > > > > > > Hello All, > > > > > > > > I have been pretty hit and miss lately with posting but thought > > I'd > > > > give an update. > > > > > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had > any > > > > pain and was able to do all the things that she loves. Lots of > > bike > > > > rides, swimming, hiking etc. > > > > > > > > The school year started off so much better than last year. She > > > > wasn't having any absences and she was excited about making > honor > > > > roll and totally enjoying her new 7th grade teachers. > > > > > > > > November came and the signs of joint pain returned along with > > > > fatigue. By December she has begun to miss lots of school. 3 > days > > > > last week and hasn't been able to go at all this week. The > joint > > > > pain has returned to her fingers, wrists, knees, ankles and > toes. > > > > She is taking lots of hot baths, heat pad, and sleeping. Sore > > > throat > > > > and swollen lymph nodes again. > > > > > > > > I have a 504 meeting planned for Monday morning. Aundrea was > kind > > > of > > > > depressed yesterday and angry about being in pain. She is > adamant > > > > that she is done with drugs and said they have never helped and > > > only > > > > make her feel worse. (same story for 5 years now) > > > > > > > > So, it leaves me at a quandry as to what to do. We can always > do > > > the > > > > the therapeutic options but of course that is unlikely to ever > > take > > > > away the flare. So, at this point I am just hoping that it wont > > be > > > > as long-lasting as it was last year. > > > > > > > > I know there are so many others that I have followed on this > list > > > > that have children with similar issues and few answers. If > anyone > > > > ever comes across a specialist that helps children who have > > chronic > > > > joint and muscle pain with limited inflammation please let me > > know. > > > > Also if anyone comes across other diagnosis/treatment > > > considerations > > > > I would love to hear it. > > > > > > > > Blessings, > > > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > > conclusive > > > > dx. this is the one that we stick with) > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2007 Report Share Posted December 20, 2007 Aundrea doesn't seem to have any tummy issues with it either. What a relief that she can at least take something, and it is continuing to bring her fever down at least 1 degree. Aundrea is 123 lbs (5' 7 " ) so I have been giving her two pills up to twice a day. She didn't make it to her final day of school. They were just having a pizza party and doing year end stuff. She had planned to go but her fever was still present and she didn't have the energy. I looked at her semester report card and I was surprised that she has already missed a month of school since the start of the year. It sure doesn't seem like she has been out that much but I guess it adds up quickly. On a positive note she did keep her grades up to All A's and to B's. She was satisfied with that. (Aundrea 12 systemic jra/gerd)- -- In , Beth Yohnk <yohnkmom@...> wrote: > > Hi : > I hope she was able to make school today. Let's hope a nice long break does the trick for her. I use Tylenol Arthritis along with my other med that I am prescribed. I was told the dose is too high for Hannah. She's only 80 lbs. I love it and use it almost daily. It's not supposed to be harsh on the stomach and it works quite well for me. > > I'm glad you received your card. I was hoping that was your current address. And thank you for the compliment! > > Beth & Hannah, 11, unspecified arhtritis; asthma; gerd; migraines > Sending prayers & happy thoughts, > Beth :-) > > > > update on Aundrea > > > > > > > > > > Hello All, > > > > > > > > > > I have been pretty hit and miss lately with posting but > thought > > > I'd > > > > > give an update. > > > > > > > > > > Aundrea enjoyed and awesome summer and early fall. Rarely had > > any > > > > > pain and was able to do all the things that she loves. Lots > of > > > bike > > > > > rides, swimming, hiking etc. > > > > > > > > > > The school year started off so much better than last year. > She > > > > > wasn't having any absences and she was excited about making > > honor > > > > > roll and totally enjoying her new 7th grade teachers. > > > > > > > > > > November came and the signs of joint pain returned along with > > > > > fatigue. By December she has begun to miss lots of school. 3 > > days > > > > > last week and hasn't been able to go at all this week. The > > joint > > > > > pain has returned to her fingers, wrists, knees, ankles and > > toes. > > > > > She is taking lots of hot baths, heat pad, and sleeping. Sore > > > > throat > > > > > and swollen lymph nodes again. > > > > > > > > > > I have a 504 meeting planned for Monday morning. Aundrea was > > kind > > > > of > > > > > depressed yesterday and angry about being in pain. She is > > adamant > > > > > that she is done with drugs and said they have never helped > and > > > > only > > > > > make her feel worse. (same story for 5 years now) > > > > > > > > > > So, it leaves me at a quandry as to what to do. We can always > > do > > > > the > > > > > the therapeutic options but of course that is unlikely to > ever > > > take > > > > > away the flare. So, at this point I am just hoping that it > wont > > > be > > > > > as long-lasting as it was last year. > > > > > > > > > > I know there are so many others that I have followed on this > > list > > > > > that have children with similar issues and few answers. If > > anyone > > > > > ever comes across a specialist that helps children who have > > > chronic > > > > > joint and muscle pain with limited inflammation please let me > > > know. > > > > > Also if anyone comes across other diagnosis/treatment > > > > considerations > > > > > I would love to hear it. > > > > > > > > > > Blessings, > > > > > > > > > > (Aundrea age 12 systemic jra/gerd for lack of a more > > > > conclusive > > > > > dx. this is the one that we stick with) > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 It's interesting that he came to this conclusion given her rashes. I don't think rashes fit with fibro at all. Maybe fibro is part of it, but I don't think that's the whole diagnosis. I'm sure you are so frustrated, I know we've been told the same things they told you. What tests are they running? Hang in there, I'll be very curious what labs show. Beth & Hannah, 11,unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Update on Aundrea Hi gang, thank you all for your prayers and well wishes regarding Aundre'a appointment today with the pediatric rheumatologist. It was an interesting visit. The dr. said he doesn't believe Aundrea has ANY rheumatoid type of disease. He said that his exam on her show know restriction with range of motion or inflammation. He did another exam with is something they due to test for fibromyalgia. She was positive for this. He said that in his opinion Aundrea has chronic pain aka fibromyalgia. I told him about all the symptoms that she has had and contnues to have. He said her pain is real and that there isn't a cure for this. He did say that he would like us to get her physical therapy, a psyc eval for biofeedback and he gave us a script for amitryptiline which is used to help with sleep disorders. (in higher doses it's also used as an anti-depressant) He gave us the name of a pediatrician that specializes in adolescence and is good with Chronic pain issues. I told him I was concerned, because when the doctors couldn't determine what was wrong with my sister they started suggesting chronic pain and psyc visits. I told him that my mom took her to mayo where they discovered she nearly had a perforated bowel and one of the worst cases of chrones that they had seen. So, I told him that if he is certain that all other possibilities have been exclueded and that she wouldn't have damage due to improper treatment then I would accept his diagnosis. He said he would run one more battery of tests to check out everything under the sun. If that turns up negative then he is confident with the diagnosis of fibromyalgia. We are suppose to follow up with him in a month. So what are your thoughts about this????? (aundrea 12 fibromyalgia/ gerd) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 I'm sorry , I didn't mean to sound so negative. I'm glad that you are feeling excited. What, if anything, did he say about her rashes? I am really curious... I have also known someone with a fibromyalgia diagnosis and she swears by guafenesin (it is actually a cough medicine, go figure) but it was instrumental in her achieving remission. and Rob 18 JAS Update on Aundrea > > > > > > > Hi gang, > > > > > > thank you all for your prayers and well wishes regarding > > > Aundre'a > > > appointment today with the pediatric rheumatologist. > It > > > was an > > > interesting visit. > > > > > > The dr. said he doesn't believe Aundrea has ANY rheumatoid > type > > > of > > > disease. He said that his exam on her show know > > > restriction with > > > range of motion or inflammation. > > > > > > He did another exam with is something they due to test for > > > fibromyalgia. She was positive for this. He said > > > that in his > > > opinion Aundrea has chronic pain aka fibromyalgia. > > > > > > I told him about all the symptoms that she has had and > contnues > > > to > > > have. He said her pain is real and that there isn't a > cure > > > for this. > > > > > > He did say that he would like us to get her physical > therapy, a > > > psyc > > > eval for biofeedback and he gave us a script for > amitryptiline > > > which > > > is used to help with sleep disorders. (in higher doses > > > it's also > > > used as an anti-depressant) > > > > > > He gave us the name of a pediatrician that specializes in > > > adolescence > > > and is good with Chronic pain issues. > > > > > > I told him I was concerned, because when the doctors > couldn't > > > determine what was wrong with my sister they started > suggesting > > > chronic pain and psyc visits. I told him that my mom > took > > > her to > > > mayo where they discovered she nearly had a perforated bowel > and > > > one > > > of the worst cases of chrones that they had seen. > > > > > > So, I told him that if he is certain that all other > > > possibilities > > > have been exclueded and that she wouldn't have damage due to > > > improper > > > treatment then I would accept his diagnosis. He said > he > > > would run > > > one more battery of tests to check out everything under the > > > sun. If > > > that turns up negative then he is confident with the > diagnosis of > > > fibromyalgia. > > > > > > We are suppose to follow up with him in a month. > > > > > > So what are your thoughts about this????? > > > > > > (aundrea 12 fibromyalgia/gerd) > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Oh, I didn't take you as negative and believe me I was just doing my best to condense my post regarding the dr. visit. It really through Aundea and I both for a spin and we felt a bit out of sorts. The only point where I started to get excited about a diagnosis was when I came home and did research on pediatric fibro and a lot of it started making sense. The dr. didn't say anything about her rashes. He didn't comment on her intense pain from cracking joints. He said people pop their knuckles all the time. this made drea mad because it was trival to him but for her it's causing sharp shooting pain. I am looking forward to seeking out the opinions of the other professionals and hoping someone can help us to reduce her pain. The dr. also couldn't explain why this has been going on since age 7. A tad early for fibro and I guess he is just chalking the first two major flares with spiking fevers, rash etc. as scarlet fever. We go back the first week of May and we will see what the lab results show. (aundrea 12 Fibromyalgia) > > > > > > > > > How in the world would fibromyalgia and chronic pain explain > > her > > rashes that are consistent when she has joint pain? > > > I am glad he is running more tests. I don't know what else to > > say. > > I " m sure that you are once again feeling let down and I don't > > blame > > you. Maybe the testing will turn up something. Did he run the > > lupus > > panel as well?? > > > and Rob 18 JAS > > > > > > Update on Aundrea > > > > > > > > > > Hi gang, > > > > > > > > thank you all for your prayers and well wishes regarding > > > > Aundre'a > > > > appointment today with the pediatric rheumatologist. > > It > > > > was an > > > > interesting visit. > > > > > > > > The dr. said he doesn't believe Aundrea has ANY rheumatoid > > type > > > > of > > > > disease. He said that his exam on her show know > > > > restriction with > > > > range of motion or inflammation. > > > > > > > > He did another exam with is something they due to test for > > > > fibromyalgia. She was positive for this. He said > > > > that in his > > > > opinion Aundrea has chronic pain aka fibromyalgia. > > > > > > > > I told him about all the symptoms that she has had and > > contnues > > > > to > > > > have. He said her pain is real and that there isn't a > > cure > > > > for this. > > > > > > > > He did say that he would like us to get her physical > > therapy, a > > > > psyc > > > > eval for biofeedback and he gave us a script for > > amitryptiline > > > > which > > > > is used to help with sleep disorders. (in higher doses > > > > it's also > > > > used as an anti-depressant) > > > > > > > > He gave us the name of a pediatrician that specializes in > > > > adolescence > > > > and is good with Chronic pain issues. > > > > > > > > I told him I was concerned, because when the doctors > > couldn't > > > > determine what was wrong with my sister they started > > suggesting > > > > chronic pain and psyc visits. I told him that my mom > > took > > > > her to > > > > mayo where they discovered she nearly had a perforated bowel > > and > > > > one > > > > of the worst cases of chrones that they had seen. > > > > > > > > So, I told him that if he is certain that all other > > > > possibilities > > > > have been exclueded and that she wouldn't have damage due to > > > > improper > > > > treatment then I would accept his diagnosis. He said > > he > > > > would run > > > > one more battery of tests to check out everything under the > > > > sun. If > > > > that turns up negative then he is confident with the > > diagnosis of > > > > fibromyalgia. > > > > > > > > We are suppose to follow up with him in a month. > > > > > > > > So what are your thoughts about this????? > > > > > > > > (aundrea 12 fibromyalgia/gerd) > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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