Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 i had a immunologist that said i had fms when i was 7 actually.... but he was forward thinking.. and than none of the other doctors belived it.... but no 7 isnt technically too early but of course the medical world thinks they know everthing... lol Issadora On Wed, Mar 26, 2008 at 11:38 PM, sonia1md <sonia1md@...> wrote: > 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 > > > > < %40> > > > > > > > > > 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 hi , thought I would offer my 2 cents worth....I have had fibro for years....at first they told us had fibro.... The only two absolute criteria for a fibro diagnosis are the duration of the pain, and the minimum number of trigger points - everything else may or may not be present (e.g. your reference to depression and anxiety). More specifically, the pediatric fibro...we were told by the pain dr at Children's Hosp. L.A. that it is not always lifelong for children - they sometimes outgrow it (I have not read literature saying this, however). An article I am including says it has been documented in children as young as 2. It also talks about dermatological symptoms I thought you might find interesting, considering Aundrea's rashes. As I said, at first we were told had fibro. She does have the trigger points. She does have severe fatigue. but they no longer mention fibro. He labs have never beenn particularly definitive....her RF sits a few pts below " positive " , her ANA is positive, and sometimes her CRP has been elevated, sometimes not)...she does have swelling, but not horrible swelling, her fingers have lost mobility in the distal joints. She is now on mtx and Enbrel and her joints are finally feeling/showing some relief, yet she is still terribly fatigued! Some might say - aha! it is fibro..or it's depression...(she was slow to present and we were told all sorts of things along the way)....only we took her to an endocrinologist (she's been making antibodies against her thyroid) - the endo called to say has extremely low levels of cortisol, suspects her adrenal glands....asks if she is still fatigued....there are other things explained by the low cortisol levels as well (very low bp, etc). My point in sharing all of this with you , is, while it may indeed be fibro for Aundrea, I would not rule anything out based on one set of labs, one exam , or one drs opinion. I know you said you wanted more tests - good! If I have done my homework, not having positive results, does not " rule out " jra, positive results just confirms it.... it is amazing me how many things we are finding with ....her comment to me today was, how so many of the jra kids have more than just jra...(don't get me wrong, it would be great if Aundrea doesn't have jra...) My mom instincts told me, there was more than fibro going on with her. You sound like such a sensible woman and a great mom - trust your " mom instincts " about Aundrea and the dr(s) and diagnosis.... Please keep us posted. http://www.enotalone.com/article/3394.html 'Hives, red blotches, tiny bumps, blisters, eczema, seborrheic dermatitis, neurodermatitis, and acne are common. Itching occurs with or without rashes. The skin may be supersensitive to touch or to temperature changes. Sudden flushing of the ears, face, or upper front chest is frequently observed. Patients experience prickling, tingling, numbness, or burning anywhere, but especially in their palms or soles, with or without redness. ' Take care, (, 17, poly, cvid, migraines) sonia1md <sonia1md@...> wrote: Hi maria, You know the more I am researching fibromyalgia it actually is fitting aundrea's symptoms pretty well....surprisingly well. The rahses are another mystery but Aundrea does have super sensitive skin. she always has had. So if she is in pain, then maybe the fact that her face flushes is just her bodies reaction to the pain. Another possibility could be the hot/cold flashes that she gets which also is increasing the facial rash. I actually feel excited about trying the treatment plans. At least he didn't just jump to narcotics..because we just aren't willing to do that. But we will try physical therapy, biofeedback, and I am going to research the amiltyrptiline. One thing that did show up very cosnistent with fibromyalgia was the trigger points for pain. The diagnosing criteria is 3 months or more of widespread pain severe pain in 5-11 tirgger points increased pain aggravated by overactivity increased subjective swelling increased pain by colder weather or humidity or illness changes by weather stiffness skin tenderness headaches brusing Raynaud phenomenon irritable bowel syndrome fatigue morning fatigue numbness lack of energy widespread pain or aching abdominal pain Aundrea has all of the above. That seems pretty remarkable to me the things that she doesn't seem to have are the anxity, stress, depression, - of course there is no mention of the rashes. I am going to start making calls tomorrow for the therapy recommendation and getting an appt with the new ped. He did say that fibro is a life long disease with no known cure but it also doesn't cause deformity, structural damage or shortenend life span. The trick will be to give her a good quality of life in spite of the pain and to diminish it as best as we can. (Aundrea 12 fibromyalgia/gerd) -- In , and Schulz <snooksmama@...> wrote: > > > 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...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 yeh.... i agree.... with that.... I know that is the case with me.... i dont have fibro only.... and some doctors easily dismiss the other symptoms because you don't 'fit' that criteria... With the joint issues, rash,,,, etc.... to me, that is a reason to make sure or pursue other opinions even with the existance of Fibro too Issadora On Thu, Mar 27, 2008 at 2:30 AM, nancy barnes <nancyb315@...> wrote: > hi , > > thought I would offer my 2 cents worth....I have had fibro for years....at > first they told us had fibro.... > The only two absolute criteria for a fibro diagnosis are the duration of > the pain, and the minimum number of trigger points - everything else may or > may not be present (e.g. your reference to depression and anxiety). > > More specifically, the pediatric fibro...we were told by the pain dr at > Children's Hosp. L.A. that it is not always lifelong for children - they > sometimes outgrow it (I have not read literature saying this, however). An > article I am including says it has been documented in children as young as > 2. It also talks about dermatological symptoms I thought you might find > interesting, considering Aundrea's rashes. > > As I said, at first we were told had fibro. She does have the > trigger points. She does have severe fatigue. but they no longer mention > fibro. He labs have never beenn particularly definitive....her RF sits a few > pts below " positive " , her ANA is positive, and sometimes her CRP has been > elevated, sometimes not)...she does have swelling, but not horrible > swelling, her fingers have lost mobility in the distal joints. She is now on > mtx and Enbrel and her joints are finally feeling/showing some relief, yet > she is still terribly fatigued! Some might say - aha! it is fibro..or it's > depression...(she was slow to present and we were told all sorts of things > along the way)....only we took her to an endocrinologist (she's been making > antibodies against her thyroid) - the endo called to say has > extremely low levels of cortisol, suspects her adrenal glands....asks if she > is still fatigued....there are other things explained by the low cortisol > levels as well (very > low bp, etc). > > My point in sharing all of this with you , is, while it may indeed be > fibro for Aundrea, I would not rule anything out based on one set of labs, > one exam , or one drs opinion. I know you said you wanted more tests - good! > If I have done my homework, not having positive results, does not " rule out " > jra, positive results just confirms it.... it is amazing me how many things > we are finding with ....her comment to me today was, how so many of > the jra kids have more than just jra...(don't get me wrong, it would be > great if Aundrea doesn't have jra...) My mom instincts told me, there was > more than fibro going on with her. You sound like such a sensible woman and > a great mom - trust your " mom instincts " about Aundrea and the dr(s) and > diagnosis.... > > Please keep us posted. > > http://www.enotalone.com/article/3394.html > > 'Hives, red blotches, tiny bumps, blisters, eczema, seborrheic dermatitis, > neurodermatitis, and acne are common. Itching occurs with or without rashes. > The skin may be supersensitive to touch or to temperature changes. Sudden > flushing of the ears, face, or upper front chest is frequently observed. > Patients experience prickling, tingling, numbness, or burning anywhere, but > especially in their palms or soles, with or without redness. ' > > Take care, > > (, 17, poly, cvid, migraines) > > sonia1md <sonia1md@... <sonia1md%40>> wrote: Hi maria, > > > You know the more I am researching fibromyalgia it actually is > fitting aundrea's symptoms pretty well....surprisingly well. > > The rahses are another mystery but Aundrea does have super sensitive > skin. she always has had. So if she is in pain, then maybe the fact > that her face flushes is just her bodies reaction to the pain. > > Another possibility could be the hot/cold flashes that she gets which > also is increasing the facial rash. > > I actually feel excited about trying the treatment plans. At least > he didn't just jump to narcotics..because we just aren't willing to > do that. But we will try physical therapy, biofeedback, and I am > going to research the amiltyrptiline. > > One thing that did show up very cosnistent with fibromyalgia was the > trigger points for pain. > > The diagnosing criteria is > > 3 months or more of widespread pain > severe pain in 5-11 tirgger points > increased pain aggravated by overactivity > increased subjective swelling > increased pain by colder weather or humidity or > illness changes by weather > stiffness > skin tenderness > headaches > brusing > Raynaud phenomenon > irritable bowel syndrome > fatigue > morning fatigue > numbness > lack of energy > widespread pain or aching > abdominal pain > > Aundrea has all of the above. That seems pretty remarkable to me > > the things that she doesn't seem to have are the > anxity, stress, depression, - > > of course there is no mention of the rashes. > > I am going to start making calls tomorrow for the therapy > recommendation and getting an appt with the new ped. > > He did say that fibro is a life long disease with no known cure but > it also doesn't cause deformity, structural damage or shortenend life > span. The trick will be to give her a good quality of life in spite > of the pain and to diminish it as best as we can. > > (Aundrea 12 fibromyalgia/gerd) > > -- In < %40>, and > Schulz > <snooksmama@...> wrote: > > > > > > 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 > > < %40> > > > > > 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 Hi and Issadora, Somehow I had missed your posts yesterday. Thank you for your insight. what you said about the endocrinologist makes a lot of sense. I do think that the hot cold flashes she is getting indication some sort of hormonal imbalance. Given that I have hypothryoid as does my mom along with my grandfather, I think its probably prudent to explore this area further. The pedi rheumy pretty much entirely dismissed this concern. My thought it to follow up these things with the peditrician that he refereed us to. Supposedly she specializes with adolesences and has experience with chronic pain. I think we need a doc who is willing to take a full history and acutally listen to Aundrea. That hasn't happened for us yet and because of that I think she has been improperly cared for for years. I am going to check out the website that you gave me...thanks. Issadora I appreciate your comments as well. I am wondering if either of you felt that aquatic therapy was helpful. Did you ever do this with ? I thought that I would try to find a pt that offered this service as well. The part that I am happy about is that at least it seems we have a few more tools on trying to decrease aundrea's pain. For that I am grateful and hoping something will help. (Aundrea 12 Fibromyalgia/gerd) > > > > > > > > > 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 > > > < %40> > > > > > > > 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 : the rheumy you saw sounds like what we have been dealing with. They just don't seem to listen and they dismiss too many things! I know there is a doc out there for both our girls, we just have to find them. Tell Drea that we are going to conference with no real diagnosis so she should not feel bad about going to camp. They are designed for anyone with joint issues, not just JRA. Tell her Hannah will be online most of the day today, since she can't do anything else if she wants to talk. Sending prayers & happy thoughts, Beth :-) Update on Aundrea > > > @group s.com < %40gr oups.com> > > > > > > > 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 Beth, I was just so tired of dealing with the docs and so was drea. We took 7 months off from seeing them and that part was nice. I am wondering if we will find better support with the pain management team that I am currently working on. I sure hope so. Drea went to school for 2 hours today. It's a half day, so I guess she made it for 1/2 of a 1/2. lol How is Hannah's knee today? Its nice that she is at least on spring break. drea was on it last week and was mad about spending it sick. (Aundrea Fibromyalgia 12) - -- In , Beth Yohnk <yohnkmom@...> wrote: > > : > the rheumy you saw sounds like what we have been dealing with. They just don't seem to listen and they dismiss too many things! I know there is a doc out there for both our girls, we just have to find them. Tell Drea that we are going to conference with no real diagnosis so she should not feel bad about going to camp. They are designed for anyone with joint issues, not just JRA. Tell her Hannah will be online most of the day today, since she can't do anything else if she wants to talk. > > Sending prayers & happy thoughts, > Beth :-) > > > > Update on Aundrea > > > > @group s.com < %40gr oups.com> > > > > > > > > > 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 Hannah's knee is still very swollen. She said this morning it hurt more today than it did yesterday and she said it feels like its on fire on the inside. She is icing it, elevating it and staying off it today. Jay is waiting on her and spoiling her today, what a great brother! Sending prayers & happy thoughts, Beth :-) Update on Aundrea > > > > @group s.com < %40gr oups.com> > > > > > > > > > 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 I absolutely love aquatic therapy and swimming... heated pool.. Issadora On Thu, Mar 27, 2008 at 12:37 PM, Beth Yohnk <yohnkmom@...> wrote: > Hannah's knee is still very swollen. She said this morning it hurt more > today than it did yesterday and she said it feels like its on fire on the > inside. She is icing it, elevating it and staying off it today. Jay is > waiting on her and spoiling her today, what a great brother! > > Sending prayers & happy thoughts, > Beth :-) > > Update on Aundrea > > > > > @group s.com < %40gr oups.com> > > > > > > > > > > > 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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