Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 wow thanks all my medical stuff has been going on since 1996 and yet to still find out diagnosis. i have been to pain specialist after specialist. physical therapy after therapy. and still no answers. i had a surgery in 1998 and now i have this burning pain. my knee has been said that my muscle flex and strength is at 25- 50 %. no real diagnosis just don't know, and they tried pain med after pain med. Lets just say now I can sympathies with women who have had morning sickness. I am a borderline diabetic I really need to watch my diet some days I am fine and other my blood sugar is 75 . Wow what a rollercoaster ride. i was told there is a guy in Baltimore that might be help me with this, but i really dot want to travel that far i live in Indiana and that is still a drive. has anyone here seen any one in land ??? thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Hi I live in Hudson's Lake ever heard of it. Just a little to the east of south bend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Hi . Interesting...I live in Indiana too. :-) Where bouts are you? Litrollnwheels@... wrote: > wow thanks all my medical stuff has been going on since 1996 and > yet to > still find out diagnosis. i have been to pain specialist after > specialist. > physical therapy after therapy. and still no answers. i had a surgery > in 1998 > and now i have this burning pain. my knee has been said that my muscle > flex > and strength is at 25- 50 %. no real diagnosis just don't know, and > they > tried pain med after pain med. Lets just say now I can sympathies with > women > who have had morning sickness. I am a borderline diabetic I really > need to > watch my diet some days I am fine and other my blood sugar is 75 . Wow > what a > rollercoaster ride. > > i was told there is a guy in Baltimore that might be help me with > this, but > i really dot want to travel that far i live in Indiana and that is > still a > drive. > has anyone here seen any one in land ??? > thanks > > ----------------------------------------------------------------------- > > ----------------------------------------------------------------------- > > The Being Sick Community > > Sharing our resources:- > Add a website URL you think may help another, or even add a link to > your own webpage. > > > Chat:- > Scheduled Daily Chats at # on IRC DALnet. > http://www.elderwyn.com/members/chat.html > > Egroups JAVA based chatroom for your use anytime:- > chat/ > (Anyone on web-tv will not be able to access java and it is very slow > compared to IRC.) > > Memorial Page:- > http://www.elderwyn.com/members/inlovingmemory.html > > Members Lounge:- > Medical resources, counselling via email, information on the daily > chat times, free psychic readings and the cartoon of the day. > http://www.elderwyn.com/members > > Members Profiles, pictures, and birthdays:- > > > Message Archives and Digest Attachment Pictures:- > messages/ > > Promoting This Community:- > Would you like people to be able to join from your webpage? > promote/ > > Subscription Details:- > 1) Individual email - means that every email sent to the list you > receive. > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your > convenience and receive no email. > > To modify your subscription settings please visit > mygroups > > To subscribe or unsubscribe > subscribe/ > > ~~~~~~~~~~~~~~~ > > “Hold on to what is good, even if it's a handful of earth. Hold on to > what you believe, even if it's a tree that stands by itself. Hold on > to what you must do even, if it's a long way from here. Hold on to > your life, even if it's easier to let go. " - Pueblo Prayer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hi , Oh, I'm so sorry that you're feeling that way. I'm having those bowel problems, but due to Endometriosis on my bowel. It's very awful, and I have been in heavy pain the last few days. It's so sd that your family doesn't understand. Feel free to contact us and scream in your message if you've to do that. You can Cry and vent here,so it will not make your condition worse. We understand and will support in any way we can. My thoughts are with you, , HUGS AND LOTS OF LOVE, Xiomi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 --Kirsty, Im so sorry to read that medical care is the way it is for you. It must be so frustrating. My sons rash was like sandpaper at 1st, then his feet and hands peeled. The doctors thought he had kawasakis disease at first, but he was eventually dx with systemic onset JRA. When you have a moment go look at the rash pictures on the website, theres a few different ones from different kids on the list. it might give you an idea what the rashes look like. A CRP of 17.9 is high, it tells that there is immflamation going on somewhere in her body. I am sure her sed rate is high too. It does sound like shes really struggling. A warm bath in the mornings will help loosen her joints and help her get going. My son LOVES his hot water bottle and rice filled gingerbread man ( we warm it in the microwave) that we put on his joints when they hurt. fatigue can be a big issue too so make sure she rests as much as she can. We never plan 2 days full of activities back to back as its just too much. Advil, motrin will help, but watch her tummy, these can be hard on it and you might want to also give something like prilosec to ward off any tummy issues from the meds. Are there any adult rheumatologists locally that see children in your area. They might be better than your regular ped. Do not believe ANY doctor that tells you a negative Rheumatiod factor means they cannot have JRA. Its just not true. Print out articles from the internet and take them with you if need be. If nothing else your ped. should be able to start your daughter on an NSAID to help. Ask that he do so. Just by looking at her CRP and SED should show them that she needs a stronger anti-imflamatory than advil. Theres a long list of NSAIDS but most start with naprosyn. keep in touch and keep fighting....you are doing an awesome job by trying to educate yourself and learning as much as you can. hugs Helen and (9,systemic) In , " Kirsty " <mccarron@...> wrote: > > Thank you for the welcome. > In just reading all the replies, a number of things have come together for me. > Firstly, we live in a beautiful place, but with a limited medical system. I live in PEI Canada. If you are ill or in an accident that requires much more than an IV, you are sent to another hospital 6 hours away, in another province. A pediatric Rheumatologist doesn't exist here. Devon's twin brother, Jordan, has diabetes, and it took us 3 yrs to see a endocrinologist at the hospital 6 hrs away. My husband has waited 7 months for an emergency MRI. These are just a few examples. > I have been keeping a diary, and recording all the temps and symptoms. I find that she has these episodes more often in the fall. Not sure why. This is the second one in two weeks. > Her temp was 105 last night, and is now 101. They do not have her on any meds at all. At first they would give her antibiotics because they thought it was some sort of infection. Now, she gets nothing. I have found that giving her ibuprofen helps with the pain, and fever control the best. > Along with sore knees, hips and left elbow, she also complains of a headache. I feel that is more because of the high temp. > She does have a type of rash, but the doctors tell me it is excema. This is on her legs, and tummy, but not in the joints, as excema typically is. To me, the rash feels like sandpaper, and is pink. She has had this on and off for about 2 yrs. At her last visit, the doctor said her Rhematoid Factor was negative, and she couldn't have JRA. I don't believe him. Also it doesn't explain the elevated ESR and CRP (yes, thank you, that was it). I can't remember her ESR level, but the CRP was 17.3, and they told me it should be below 5.5. > I asked Devon if she felt sore or stiff when she doesn't have the fever, and her response was 'no, not really'. Yesterday, it took her 20 mins to walk 2 blocks home. She said her legs hurt so bad, she had to keep stopping and resting. My oldest daughter said Devon cried all the way home. Unfortunately I was at work myself, otherwise I would of picked her up. These fevers appear without any warning. I called the doctor, but he was away until Monday (typical). Devon does have an appointment with him on the 18th, and I am going to take her to get more blood work this afternoon. > We have a standing order for TSH, CBC with differential, AMA, RF, ESR, CRP and some other one which I can't read his writing on, but looks like dsDNA. (I know I don't have that right). Anyhow, I find the whole thing very frustrating, and I am sort of at the end of my rope. Thanks for all the suggestions. > Kirsty > ---------- > > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.408 / Virus Database: 268.13.2/472 - Release Date: 10/11/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 n's hands and feet also peel. n also gets headaches with her disease. The doctors always say that she shouldn't have headaches. I have news for them---she gets headaches with the disease. Keep fighting. (n, 17, systemic) On Oct 14, 2006, at 2:49 PM, hburger64 wrote: > --Kirsty, > > Im so sorry to read that medical care is the way it is for you. It > must be so frustrating. > > My sons rash was like sandpaper at 1st, then his feet and hands > peeled. The doctors thought he had kawasakis disease at first, but > he was eventually dx with systemic onset JRA. > > When you have a moment go look at the rash pictures on the website, > theres a few different ones from different kids on the list. it > might give you an idea what the rashes look like. > > A CRP of 17.9 is high, it tells that there is immflamation going on > somewhere in her body. I am sure her sed rate is high too. > > It does sound like shes really struggling. A warm bath in the > mornings will help loosen her joints and help her get going. My son > LOVES his hot water bottle and rice filled gingerbread man ( we warm > it in the microwave) that we put on his joints when they hurt. > fatigue can be a big issue too so make sure she rests as much as she > can. We never plan 2 days full of activities back to back as its > just too much. > > Advil, motrin will help, but watch her tummy, these can be hard on > it and you might want to also give something like prilosec to ward > off any tummy issues from the meds. > > Are there any adult rheumatologists locally that see children in > your area. They might be better than your regular ped. Do not > believe ANY doctor that tells you a negative Rheumatiod factor means > they cannot have JRA. Its just not true. Print out articles from the > internet and take them with you if need be. If nothing else your > ped. should be able to start your daughter on an NSAID to help. Ask > that he do so. Just by looking at her CRP and SED should show them > that she needs a stronger anti-imflamatory than advil. Theres a long > list of NSAIDS but most start with naprosyn. > > keep in touch and keep fighting....you are doing an awesome job by > trying to educate yourself and learning as much as you can. > > hugs Helen and (9,systemic) > > In , " Kirsty " <mccarron@...> wrote: > > > > Thank you for the welcome. > > In just reading all the replies, a number of things have come > together for me. > > Firstly, we live in a beautiful place, but with a limited > medical system. I live in PEI Canada. If you are ill or in an > accident that requires much more than an IV, you are sent to another > hospital 6 hours away, in another province. A pediatric > Rheumatologist doesn't exist here. Devon's twin brother, Jordan, > has diabetes, and it took us 3 yrs to see a endocrinologist at the > hospital 6 hrs away. My husband has waited 7 months for an > emergency MRI. These are just a few examples. > > I have been keeping a diary, and recording all the temps and > symptoms. I find that she has these episodes more often in the > fall. Not sure why. This is the second one in two weeks. > > Her temp was 105 last night, and is now 101. They do not have > her on any meds at all. At first they would give her antibiotics > because they thought it was some sort of infection. Now, she gets > nothing. I have found that giving her ibuprofen helps with the > pain, and fever control the best. > > Along with sore knees, hips and left elbow, she also complains of > a headache. I feel that is more because of the high temp. > > She does have a type of rash, but the doctors tell me it is > excema. This is on her legs, and tummy, but not in the joints, as > excema typically is. To me, the rash feels like sandpaper, and is > pink. She has had this on and off for about 2 yrs. At her last > visit, the doctor said her Rhematoid Factor was negative, and she > couldn't have JRA. I don't believe him. Also it doesn't explain > the elevated ESR and CRP (yes, thank you, that was it). I can't > remember her ESR level, but the CRP was 17.3, and they told me it > should be below 5.5. > > I asked Devon if she felt sore or stiff when she doesn't have > the fever, and her response was 'no, not really'. Yesterday, it > took her 20 mins to walk 2 blocks home. She said her legs hurt so > bad, she had to keep stopping and resting. My oldest daughter said > Devon cried all the way home. Unfortunately I was at work myself, > otherwise I would of picked her up. These fevers appear without any > warning. I called the doctor, but he was away until Monday > (typical). Devon does have an appointment with him on the 18th, and > I am going to take her to get more blood work this afternoon. > > We have a standing order for TSH, CBC with differential, AMA, RF, > ESR, CRP and some other one which I can't read his writing on, but > looks like dsDNA. (I know I don't have that right). Anyhow, I find > the whole thing very frustrating, and I am sort of at the end of my > rope. Thanks for all the suggestions. > > Kirsty > > ---------- > > > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.1.408 / Virus Database: 268.13.2/472 - Release Date: > 10/11/2006 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 Thanks. I printed off a bunch of things to take with me on Wednesday. I also sent some info to my mother, who was also shocked at how many things Devon had in common. I looked at the rashes, but they don't look like Devon's. I shall have to take a pic of hers. Funny enough, the pads of her fingers, and toes peel, and the pads also split, but again, the doctor tells me this is a form of excema. We have often laughed at the fact that Devon switches off at 7:30pm every night. It doesn't matter what is going on, it is like someone unplugs her energy supply, and she is out. Maybe there is more to it than we thought. I will definitely check out the Rheumatologist here. I am sure there must be one in Charlottetown. I wish they would start catering to the children, so many of them are struggling here for medical care. I am only giving Devon the Ibuprofen when she is having an episode, the other times she does quite well. Have you noticed a seasonal effect with the fevers? Kirsty Re: Warm Welcome --Kirsty, Im so sorry to read that medical care is the way it is for you. It must be so frustrating. My sons rash was like sandpaper at 1st, then his feet and hands peeled. The doctors thought he had kawasakis disease at first, but he was eventually dx with systemic onset JRA. When you have a moment go look at the rash pictures on the website, theres a few different ones from different kids on the list. it might give you an idea what the rashes look like. A CRP of 17.9 is high, it tells that there is immflamation going on somewhere in her body. I am sure her sed rate is high too. It does sound like shes really struggling. A warm bath in the mornings will help loosen her joints and help her get going. My son LOVES his hot water bottle and rice filled gingerbread man ( we warm it in the microwave) that we put on his joints when they hurt. fatigue can be a big issue too so make sure she rests as much as she can. We never plan 2 days full of activities back to back as its just too much. Advil, motrin will help, but watch her tummy, these can be hard on it and you might want to also give something like prilosec to ward off any tummy issues from the meds. Are there any adult rheumatologists locally that see children in your area. They might be better than your regular ped. Do not believe ANY doctor that tells you a negative Rheumatiod factor means they cannot have JRA. Its just not true. Print out articles from the internet and take them with you if need be. If nothing else your ped. should be able to start your daughter on an NSAID to help. Ask that he do so. Just by looking at her CRP and SED should show them that she needs a stronger anti-imflamatory than advil. Theres a long list of NSAIDS but most start with naprosyn. keep in touch and keep fighting....you are doing an awesome job by trying to educate yourself and learning as much as you can. hugs Helen and (9,systemic) In , " Kirsty " <mccarron@...> wrote: > > Thank you for the welcome. > In just reading all the replies, a number of things have come together for me. > Firstly, we live in a beautiful place, but with a limited medical system. I live in PEI Canada. If you are ill or in an accident that requires much more than an IV, you are sent to another hospital 6 hours away, in another province. A pediatric Rheumatologist doesn't exist here. Devon's twin brother, Jordan, has diabetes, and it took us 3 yrs to see a endocrinologist at the hospital 6 hrs away. My husband has waited 7 months for an emergency MRI. These are just a few examples. > I have been keeping a diary, and recording all the temps and symptoms. I find that she has these episodes more often in the fall. Not sure why. This is the second one in two weeks. > Her temp was 105 last night, and is now 101. They do not have her on any meds at all. At first they would give her antibiotics because they thought it was some sort of infection. Now, she gets nothing. I have found that giving her ibuprofen helps with the pain, and fever control the best. > Along with sore knees, hips and left elbow, she also complains of a headache. I feel that is more because of the high temp. > She does have a type of rash, but the doctors tell me it is excema. This is on her legs, and tummy, but not in the joints, as excema typically is. To me, the rash feels like sandpaper, and is pink. She has had this on and off for about 2 yrs. At her last visit, the doctor said her Rhematoid Factor was negative, and she couldn't have JRA. I don't believe him. Also it doesn't explain the elevated ESR and CRP (yes, thank you, that was it). I can't remember her ESR level, but the CRP was 17.3, and they told me it should be below 5.5. > I asked Devon if she felt sore or stiff when she doesn't have the fever, and her response was 'no, not really'. Yesterday, it took her 20 mins to walk 2 blocks home. She said her legs hurt so bad, she had to keep stopping and resting. My oldest daughter said Devon cried all the way home. Unfortunately I was at work myself, otherwise I would of picked her up. These fevers appear without any warning. I called the doctor, but he was away until Monday (typical). Devon does have an appointment with him on the 18th, and I am going to take her to get more blood work this afternoon. > We have a standing order for TSH, CBC with differential, AMA, RF, ESR, CRP and some other one which I can't read his writing on, but looks like dsDNA. (I know I don't have that right). Anyhow, I find the whole thing very frustrating, and I am sort of at the end of my rope. Thanks for all the suggestions. > Kirsty > ---------- > > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.408 / Virus Database: 268.13.2/472 - Release Date: 10/11/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 This is all too familiar. I wish I had joined this list a year ago, maybe Devon wouldn't of had such a rough time. Kirsty Re: Re: Warm Welcome n's hands and feet also peel. n also gets headaches with her disease. The doctors always say that she shouldn't have headaches. I have news for them---she gets headaches with the disease. Keep fighting. (n, 17, systemic) On Oct 14, 2006, at 2:49 PM, hburger64 wrote: > --Kirsty, > > Im so sorry to read that medical care is the way it is for you. It > must be so frustrating. > > My sons rash was like sandpaper at 1st, then his feet and hands > peeled. The doctors thought he had kawasakis disease at first, but > he was eventually dx with systemic onset JRA. > > When you have a moment go look at the rash pictures on the website, > theres a few different ones from different kids on the list. it > might give you an idea what the rashes look like. > > A CRP of 17.9 is high, it tells that there is immflamation going on > somewhere in her body. I am sure her sed rate is high too. > > It does sound like shes really struggling. A warm bath in the > mornings will help loosen her joints and help her get going. My son > LOVES his hot water bottle and rice filled gingerbread man ( we warm > it in the microwave) that we put on his joints when they hurt. > fatigue can be a big issue too so make sure she rests as much as she > can. We never plan 2 days full of activities back to back as its > just too much. > > Advil, motrin will help, but watch her tummy, these can be hard on > it and you might want to also give something like prilosec to ward > off any tummy issues from the meds. > > Are there any adult rheumatologists locally that see children in > your area. They might be better than your regular ped. Do not > believe ANY doctor that tells you a negative Rheumatiod factor means > they cannot have JRA. Its just not true. Print out articles from the > internet and take them with you if need be. If nothing else your > ped. should be able to start your daughter on an NSAID to help. Ask > that he do so. Just by looking at her CRP and SED should show them > that she needs a stronger anti-imflamatory than advil. Theres a long > list of NSAIDS but most start with naprosyn. > > keep in touch and keep fighting....you are doing an awesome job by > trying to educate yourself and learning as much as you can. > > hugs Helen and (9,systemic) > > In , " Kirsty " <mccarron@...> wrote: > > > > Thank you for the welcome. > > In just reading all the replies, a number of things have come > together for me. > > Firstly, we live in a beautiful place, but with a limited > medical system. I live in PEI Canada. If you are ill or in an > accident that requires much more than an IV, you are sent to another > hospital 6 hours away, in another province. A pediatric > Rheumatologist doesn't exist here. Devon's twin brother, Jordan, > has diabetes, and it took us 3 yrs to see a endocrinologist at the > hospital 6 hrs away. My husband has waited 7 months for an > emergency MRI. These are just a few examples. > > I have been keeping a diary, and recording all the temps and > symptoms. I find that she has these episodes more often in the > fall. Not sure why. This is the second one in two weeks. > > Her temp was 105 last night, and is now 101. They do not have > her on any meds at all. At first they would give her antibiotics > because they thought it was some sort of infection. Now, she gets > nothing. I have found that giving her ibuprofen helps with the > pain, and fever control the best. > > Along with sore knees, hips and left elbow, she also complains of > a headache. I feel that is more because of the high temp. > > She does have a type of rash, but the doctors tell me it is > excema. This is on her legs, and tummy, but not in the joints, as > excema typically is. To me, the rash feels like sandpaper, and is > pink. She has had this on and off for about 2 yrs. At her last > visit, the doctor said her Rhematoid Factor was negative, and she > couldn't have JRA. I don't believe him. Also it doesn't explain > the elevated ESR and CRP (yes, thank you, that was it). I can't > remember her ESR level, but the CRP was 17.3, and they told me it > should be below 5.5. > > I asked Devon if she felt sore or stiff when she doesn't have > the fever, and her response was 'no, not really'. Yesterday, it > took her 20 mins to walk 2 blocks home. She said her legs hurt so > bad, she had to keep stopping and resting. My oldest daughter said > Devon cried all the way home. Unfortunately I was at work myself, > otherwise I would of picked her up. These fevers appear without any > warning. I called the doctor, but he was away until Monday > (typical). Devon does have an appointment with him on the 18th, and > I am going to take her to get more blood work this afternoon. > > We have a standing order for TSH, CBC with differential, AMA, RF, > ESR, CRP and some other one which I can't read his writing on, but > looks like dsDNA. (I know I don't have that right). Anyhow, I find > the whole thing very frustrating, and I am sort of at the end of my > rope. Thanks for all the suggestions. > > Kirsty > > ---------- > > > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.1.408 / Virus Database: 268.13.2/472 - Release Date: > 10/11/2006 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 -, Nick has always struggled with headaches too.... hugs Helen and (9,systemic) -- In , Price <bc.price@...> wrote: > > n's hands and feet also peel. n also gets headaches with > her disease. The doctors always say that she shouldn't have > headaches. I have news for them---she gets headaches with the disease. > > Keep fighting. (n, 17, systemic) > > > > On Oct 14, 2006, at 2:49 PM, hburger64 wrote: > > > --Kirsty, > > > > Im so sorry to read that medical care is the way it is for you. It > > must be so frustrating. > > > > My sons rash was like sandpaper at 1st, then his feet and hands > > peeled. The doctors thought he had kawasakis disease at first, but > > he was eventually dx with systemic onset JRA. > > > > When you have a moment go look at the rash pictures on the website, > > theres a few different ones from different kids on the list. it > > might give you an idea what the rashes look like. > > > > A CRP of 17.9 is high, it tells that there is immflamation going on > > somewhere in her body. I am sure her sed rate is high too. > > > > It does sound like shes really struggling. A warm bath in the > > mornings will help loosen her joints and help her get going. My son > > LOVES his hot water bottle and rice filled gingerbread man ( we warm > > it in the microwave) that we put on his joints when they hurt. > > fatigue can be a big issue too so make sure she rests as much as she > > can. We never plan 2 days full of activities back to back as its > > just too much. > > > > Advil, motrin will help, but watch her tummy, these can be hard on > > it and you might want to also give something like prilosec to ward > > off any tummy issues from the meds. > > > > Are there any adult rheumatologists locally that see children in > > your area. They might be better than your regular ped. Do not > > believe ANY doctor that tells you a negative Rheumatiod factor means > > they cannot have JRA. Its just not true. Print out articles from the > > internet and take them with you if need be. If nothing else your > > ped. should be able to start your daughter on an NSAID to help. Ask > > that he do so. Just by looking at her CRP and SED should show them > > that she needs a stronger anti-imflamatory than advil. Theres a long > > list of NSAIDS but most start with naprosyn. > > > > keep in touch and keep fighting....you are doing an awesome job by > > trying to educate yourself and learning as much as you can. > > > > hugs Helen and (9,systemic) > > > > In , " Kirsty " <mccarron@> wrote: > > > > > > Thank you for the welcome. > > > In just reading all the replies, a number of things have come > > together for me. > > > Firstly, we live in a beautiful place, but with a limited > > medical system. I live in PEI Canada. If you are ill or in an > > accident that requires much more than an IV, you are sent to another > > hospital 6 hours away, in another province. A pediatric > > Rheumatologist doesn't exist here. Devon's twin brother, Jordan, > > has diabetes, and it took us 3 yrs to see a endocrinologist at the > > hospital 6 hrs away. My husband has waited 7 months for an > > emergency MRI. These are just a few examples. > > > I have been keeping a diary, and recording all the temps and > > symptoms. I find that she has these episodes more often in the > > fall. Not sure why. This is the second one in two weeks. > > > Her temp was 105 last night, and is now 101. They do not have > > her on any meds at all. At first they would give her antibiotics > > because they thought it was some sort of infection. Now, she gets > > nothing. I have found that giving her ibuprofen helps with the > > pain, and fever control the best. > > > Along with sore knees, hips and left elbow, she also complains of > > a headache. I feel that is more because of the high temp. > > > She does have a type of rash, but the doctors tell me it is > > excema. This is on her legs, and tummy, but not in the joints, as > > excema typically is. To me, the rash feels like sandpaper, and is > > pink. She has had this on and off for about 2 yrs. At her last > > visit, the doctor said her Rhematoid Factor was negative, and she > > couldn't have JRA. I don't believe him. Also it doesn't explain > > the elevated ESR and CRP (yes, thank you, that was it). I can't > > remember her ESR level, but the CRP was 17.3, and they told me it > > should be below 5.5. > > > I asked Devon if she felt sore or stiff when she doesn't have > > the fever, and her response was 'no, not really'. Yesterday, it > > took her 20 mins to walk 2 blocks home. She said her legs hurt so > > bad, she had to keep stopping and resting. My oldest daughter said > > Devon cried all the way home. Unfortunately I was at work myself, > > otherwise I would of picked her up. These fevers appear without any > > warning. I called the doctor, but he was away until Monday > > (typical). Devon does have an appointment with him on the 18th, and > > I am going to take her to get more blood work this afternoon. > > > We have a standing order for TSH, CBC with differential, AMA, RF, > > ESR, CRP and some other one which I can't read his writing on, but > > looks like dsDNA. (I know I don't have that right). Anyhow, I find > > the whole thing very frustrating, and I am sort of at the end of my > > rope. Thanks for all the suggestions. > > > Kirsty > > > ---------- > > > > > > No virus found in this outgoing message. > > > Checked by AVG Free Edition. > > > Version: 7.1.408 / Virus Database: 268.13.2/472 - Release Date: > > 10/11/2006 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 We need to give these doctors a course on systemic JRA. On Oct 14, 2006, at 5:04 PM, hburger64 wrote: > -, > > Nick has always struggled with headaches too.... > > hugs Helen and (9,systemic) > > -- In , Price <bc.price@...> wrote: > > > > n's hands and feet also peel. n also gets headaches > with > > her disease. The doctors always say that she shouldn't have > > headaches. I have news for them---she gets headaches with the > disease. > > > > Keep fighting. (n, 17, systemic) > > > > > > > > On Oct 14, 2006, at 2:49 PM, hburger64 wrote: > > > > > --Kirsty, > > > > > > Im so sorry to read that medical care is the way it is for you. > It > > > must be so frustrating. > > > > > > My sons rash was like sandpaper at 1st, then his feet and hands > > > peeled. The doctors thought he had kawasakis disease at first, > but > > > he was eventually dx with systemic onset JRA. > > > > > > When you have a moment go look at the rash pictures on the > website, > > > theres a few different ones from different kids on the list. it > > > might give you an idea what the rashes look like. > > > > > > A CRP of 17.9 is high, it tells that there is immflamation going > on > > > somewhere in her body. I am sure her sed rate is high too. > > > > > > It does sound like shes really struggling. A warm bath in the > > > mornings will help loosen her joints and help her get going. My > son > > > LOVES his hot water bottle and rice filled gingerbread man ( we > warm > > > it in the microwave) that we put on his joints when they hurt. > > > fatigue can be a big issue too so make sure she rests as much as > she > > > can. We never plan 2 days full of activities back to back as its > > > just too much. > > > > > > Advil, motrin will help, but watch her tummy, these can be hard > on > > > it and you might want to also give something like prilosec to > ward > > > off any tummy issues from the meds. > > > > > > Are there any adult rheumatologists locally that see children in > > > your area. They might be better than your regular ped. Do not > > > believe ANY doctor that tells you a negative Rheumatiod factor > means > > > they cannot have JRA. Its just not true. Print out articles from > the > > > internet and take them with you if need be. If nothing else your > > > ped. should be able to start your daughter on an NSAID to help. > Ask > > > that he do so. Just by looking at her CRP and SED should show > them > > > that she needs a stronger anti-imflamatory than advil. Theres a > long > > > list of NSAIDS but most start with naprosyn. > > > > > > keep in touch and keep fighting....you are doing an awesome job > by > > > trying to educate yourself and learning as much as you can. > > > > > > hugs Helen and (9,systemic) > > > > > > In , " Kirsty " <mccarron@> wrote: > > > > > > > > Thank you for the welcome. > > > > In just reading all the replies, a number of things have come > > > together for me. > > > > Firstly, we live in a beautiful place, but with a limited > > > medical system. I live in PEI Canada. If you are ill or in an > > > accident that requires much more than an IV, you are sent to > another > > > hospital 6 hours away, in another province. A pediatric > > > Rheumatologist doesn't exist here. Devon's twin brother, Jordan, > > > has diabetes, and it took us 3 yrs to see a endocrinologist at > the > > > hospital 6 hrs away. My husband has waited 7 months for an > > > emergency MRI. These are just a few examples. > > > > I have been keeping a diary, and recording all the temps and > > > symptoms. I find that she has these episodes more often in the > > > fall. Not sure why. This is the second one in two weeks. > > > > Her temp was 105 last night, and is now 101. They do not have > > > her on any meds at all. At first they would give her antibiotics > > > because they thought it was some sort of infection. Now, she gets > > > nothing. I have found that giving her ibuprofen helps with the > > > pain, and fever control the best. > > > > Along with sore knees, hips and left elbow, she also complains > of > > > a headache. I feel that is more because of the high temp. > > > > She does have a type of rash, but the doctors tell me it is > > > excema. This is on her legs, and tummy, but not in the joints, as > > > excema typically is. To me, the rash feels like sandpaper, and is > > > pink. She has had this on and off for about 2 yrs. At her last > > > visit, the doctor said her Rhematoid Factor was negative, and she > > > couldn't have JRA. I don't believe him. Also it doesn't explain > > > the elevated ESR and CRP (yes, thank you, that was it). I can't > > > remember her ESR level, but the CRP was 17.3, and they told me it > > > should be below 5.5. > > > > I asked Devon if she felt sore or stiff when she doesn't have > > > the fever, and her response was 'no, not really'. Yesterday, it > > > took her 20 mins to walk 2 blocks home. She said her legs hurt so > > > bad, she had to keep stopping and resting. My oldest daughter > said > > > Devon cried all the way home. Unfortunately I was at work myself, > > > otherwise I would of picked her up. These fevers appear without > any > > > warning. I called the doctor, but he was away until Monday > > > (typical). Devon does have an appointment with him on the 18th, > and > > > I am going to take her to get more blood work this afternoon. > > > > We have a standing order for TSH, CBC with differential, AMA, > RF, > > > ESR, CRP and some other one which I can't read his writing on, > but > > > looks like dsDNA. (I know I don't have that right). Anyhow, I > find > > > the whole thing very frustrating, and I am sort of at the end of > my > > > rope. Thanks for all the suggestions. > > > > Kirsty > > > > ---------- > > > > > > > > No virus found in this outgoing message. > > > > Checked by AVG Free Edition. > > > > Version: 7.1.408 / Virus Database: 268.13.2/472 - Release Date: > > > 10/11/2006 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 -Kirsty, Nick has been dealing with JRA for 3 1/2 years now. It has been awhile since we have had to deal with the rashes and fevers. But you could set your clock by his fevers in the begining. He would have 101-102 early morning and would then be fever free all day until supper time and you could watch him go from no fever to 104-105 in a matter of minutes, every single supper time. He was started on naprosyn and then switched to vioxx until about 8 months into it when we finally saw actual joint swelling in all his fingers and wrist joints on both hands. He was then started on methatrexate, prednisone, folic acid. It can be quite a battle finding the right combo of drugs, we maxed out the methatrexate and added enbrel which worked well for 9 months and then was becoming less effective. A year ago we switched to remicade infusions and Nick has been doing well on those, we have had to tweak the dosing and the intervals between infusions, but hes doing well currently going to the hosptial every 4 weeks for the remicade. Just the past week we were finally able to stop the prednisone 2 years and nearly 8 months after we started it ( it was only suppose to be for a few weeks) Also look online for any rash pictures, I have noticed that quite a few look a little different with each child. Nicks would move around. He would have a rash on his leg and then a few hours later it would be gone from the leg, but re-appear on his torso. Some have said its itchy, but some say its not. Nick was itchy. As I said its been quite awhile since ive seen his rash. Hugs Helen and (9,systemic) -- In , " Kirsty " <mccarron@...> wrote: > > Thanks. I printed off a bunch of things to take with me on > Wednesday. I also sent some info to my mother, who was also shocked at how many things Devon had in common. > I looked at the rashes, but they don't look like Devon's. I shall have to take a pic of hers. Funny enough, the pads of her fingers, and toes peel, and the pads also split, but again, the doctor tells me this is a form of excema. > We have often laughed at the fact that Devon switches off at 7:30pm every night. It doesn't matter what is going on, it is like someone unplugs her energy supply, and she is out. Maybe there is more to it than we thought. > I will definitely check out the Rheumatologist here. I am sure there must be one in Charlottetown. I wish they would start catering to the children, so many of them are struggling here for medical care. > I am only giving Devon the Ibuprofen when she is having an episode, the other times she does quite well. > Have you noticed a seasonal effect with the fevers? > Kirsty > Re: Warm Welcome > > > --Kirsty, > > Im so sorry to read that medical care is the way it is for you. It > must be so frustrating. > > My sons rash was like sandpaper at 1st, then his feet and hands > peeled. The doctors thought he had kawasakis disease at first, but > he was eventually dx with systemic onset JRA. > > When you have a moment go look at the rash pictures on the website, > theres a few different ones from different kids on the list. it > might give you an idea what the rashes look like. > > A CRP of 17.9 is high, it tells that there is immflamation going on > somewhere in her body. I am sure her sed rate is high too. > > It does sound like shes really struggling. A warm bath in the > mornings will help loosen her joints and help her get going. My son > LOVES his hot water bottle and rice filled gingerbread man ( we warm > it in the microwave) that we put on his joints when they hurt. > fatigue can be a big issue too so make sure she rests as much as she > can. We never plan 2 days full of activities back to back as its > just too much. > > Advil, motrin will help, but watch her tummy, these can be hard on > it and you might want to also give something like prilosec to ward > off any tummy issues from the meds. > > Are there any adult rheumatologists locally that see children in > your area. They might be better than your regular ped. Do not > believe ANY doctor that tells you a negative Rheumatiod factor means > they cannot have JRA. Its just not true. Print out articles from the > internet and take them with you if need be. If nothing else your > ped. should be able to start your daughter on an NSAID to help. Ask > that he do so. Just by looking at her CRP and SED should show them > that she needs a stronger anti-imflamatory than advil. Theres a long > list of NSAIDS but most start with naprosyn. > > keep in touch and keep fighting....you are doing an awesome job by > trying to educate yourself and learning as much as you can. > > hugs Helen and (9,systemic) > > In , " Kirsty " <mccarron@> wrote: > > > > Thank you for the welcome. > > In just reading all the replies, a number of things have come > together for me. > > Firstly, we live in a beautiful place, but with a limited > medical system. I live in PEI Canada. If you are ill or in an > accident that requires much more than an IV, you are sent to another > hospital 6 hours away, in another province. A pediatric > Rheumatologist doesn't exist here. Devon's twin brother, Jordan, > has diabetes, and it took us 3 yrs to see a endocrinologist at the > hospital 6 hrs away. My husband has waited 7 months for an > emergency MRI. These are just a few examples. > > I have been keeping a diary, and recording all the temps and > symptoms. I find that she has these episodes more often in the > fall. Not sure why. This is the second one in two weeks. > > Her temp was 105 last night, and is now 101. They do not have > her on any meds at all. At first they would give her antibiotics > because they thought it was some sort of infection. Now, she gets > nothing. I have found that giving her ibuprofen helps with the > pain, and fever control the best. > > Along with sore knees, hips and left elbow, she also complains of > a headache. I feel that is more because of the high temp. > > She does have a type of rash, but the doctors tell me it is > excema. This is on her legs, and tummy, but not in the joints, as > excema typically is. To me, the rash feels like sandpaper, and is > pink. She has had this on and off for about 2 yrs. At her last > visit, the doctor said her Rhematoid Factor was negative, and she > couldn't have JRA. I don't believe him. Also it doesn't explain > the elevated ESR and CRP (yes, thank you, that was it). I can't > remember her ESR level, but the CRP was 17.3, and they told me it > should be below 5.5. > > I asked Devon if she felt sore or stiff when she doesn't have > the fever, and her response was 'no, not really'. Yesterday, it > took her 20 mins to walk 2 blocks home. She said her legs hurt so > bad, she had to keep stopping and resting. My oldest daughter said > Devon cried all the way home. Unfortunately I was at work myself, > otherwise I would of picked her up. These fevers appear without any > warning. I called the doctor, but he was away until Monday > (typical). Devon does have an appointment with him on the 18th, and > I am going to take her to get more blood work this afternoon. > > We have a standing order for TSH, CBC with differential, AMA, RF, > ESR, CRP and some other one which I can't read his writing on, but > looks like dsDNA. (I know I don't have that right). Anyhow, I find > the whole thing very frustrating, and I am sort of at the end of my > rope. Thanks for all the suggestions. > > Kirsty > > ---------- > > > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.1.408 / Virus Database: 268.13.2/472 - Release Date: > 10/11/2006 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 Drea also had peeling skin on ankles, knees and fingers. It followed the sandpaper rash and only occured the first year of disease when she ran really high fevers. I don't have those pictures posted on the site. I should try and do that sometime. Aundrea has had so many different types of looking rashes with this disease its crazy....and yes, we too have heard its excema..that is more likely to come from a dermatologist or ped. than a rheumatologist. Good for you on getting all the info together to take to the doctor appt. (Aundrea 11 systemic jra/gerd)- -- In , " Kirsty " <mccarron@...> wrote: > > Thanks. I printed off a bunch of things to take with me on > Wednesday. I also sent some info to my mother, who was also shocked at how many things Devon had in common. > I looked at the rashes, but they don't look like Devon's. I shall have to take a pic of hers. Funny enough, the pads of her fingers, and toes peel, and the pads also split, but again, the doctor tells me this is a form of excema. > We have often laughed at the fact that Devon switches off at 7:30pm every night. It doesn't matter what is going on, it is like someone unplugs her energy supply, and she is out. Maybe there is more to it than we thought. > I will definitely check out the Rheumatologist here. I am sure there must be one in Charlottetown. I wish they would start catering to the children, so many of them are struggling here for medical care. > I am only giving Devon the Ibuprofen when she is having an episode, the other times she does quite well. > Have you noticed a seasonal effect with the fevers? > Kirsty > Re: Warm Welcome > > > --Kirsty, > > Im so sorry to read that medical care is the way it is for you. It > must be so frustrating. > > My sons rash was like sandpaper at 1st, then his feet and hands > peeled. The doctors thought he had kawasakis disease at first, but > he was eventually dx with systemic onset JRA. > > When you have a moment go look at the rash pictures on the website, > theres a few different ones from different kids on the list. it > might give you an idea what the rashes look like. > > A CRP of 17.9 is high, it tells that there is immflamation going on > somewhere in her body. I am sure her sed rate is high too. > > It does sound like shes really struggling. A warm bath in the > mornings will help loosen her joints and help her get going. My son > LOVES his hot water bottle and rice filled gingerbread man ( we warm > it in the microwave) that we put on his joints when they hurt. > fatigue can be a big issue too so make sure she rests as much as she > can. We never plan 2 days full of activities back to back as its > just too much. > > Advil, motrin will help, but watch her tummy, these can be hard on > it and you might want to also give something like prilosec to ward > off any tummy issues from the meds. > > Are there any adult rheumatologists locally that see children in > your area. They might be better than your regular ped. Do not > believe ANY doctor that tells you a negative Rheumatiod factor means > they cannot have JRA. Its just not true. Print out articles from the > internet and take them with you if need be. If nothing else your > ped. should be able to start your daughter on an NSAID to help. Ask > that he do so. Just by looking at her CRP and SED should show them > that she needs a stronger anti-imflamatory than advil. Theres a long > list of NSAIDS but most start with naprosyn. > > keep in touch and keep fighting....you are doing an awesome job by > trying to educate yourself and learning as much as you can. > > hugs Helen and (9,systemic) > > In , " Kirsty " <mccarron@> wrote: > > > > Thank you for the welcome. > > In just reading all the replies, a number of things have come > together for me. > > Firstly, we live in a beautiful place, but with a limited > medical system. I live in PEI Canada. If you are ill or in an > accident that requires much more than an IV, you are sent to another > hospital 6 hours away, in another province. A pediatric > Rheumatologist doesn't exist here. Devon's twin brother, Jordan, > has diabetes, and it took us 3 yrs to see a endocrinologist at the > hospital 6 hrs away. My husband has waited 7 months for an > emergency MRI. These are just a few examples. > > I have been keeping a diary, and recording all the temps and > symptoms. I find that she has these episodes more often in the > fall. Not sure why. This is the second one in two weeks. > > Her temp was 105 last night, and is now 101. They do not have > her on any meds at all. At first they would give her antibiotics > because they thought it was some sort of infection. Now, she gets > nothing. I have found that giving her ibuprofen helps with the > pain, and fever control the best. > > Along with sore knees, hips and left elbow, she also complains of > a headache. I feel that is more because of the high temp. > > She does have a type of rash, but the doctors tell me it is > excema. This is on her legs, and tummy, but not in the joints, as > excema typically is. To me, the rash feels like sandpaper, and is > pink. She has had this on and off for about 2 yrs. At her last > visit, the doctor said her Rhematoid Factor was negative, and she > couldn't have JRA. I don't believe him. Also it doesn't explain > the elevated ESR and CRP (yes, thank you, that was it). I can't > remember her ESR level, but the CRP was 17.3, and they told me it > should be below 5.5. > > I asked Devon if she felt sore or stiff when she doesn't have > the fever, and her response was 'no, not really'. Yesterday, it > took her 20 mins to walk 2 blocks home. She said her legs hurt so > bad, she had to keep stopping and resting. My oldest daughter said > Devon cried all the way home. Unfortunately I was at work myself, > otherwise I would of picked her up. These fevers appear without any > warning. I called the doctor, but he was away until Monday > (typical). Devon does have an appointment with him on the 18th, and > I am going to take her to get more blood work this afternoon. > > We have a standing order for TSH, CBC with differential, AMA, RF, > ESR, CRP and some other one which I can't read his writing on, but > looks like dsDNA. (I know I don't have that right). Anyhow, I find > the whole thing very frustrating, and I am sort of at the end of my > rope. Thanks for all the suggestions. > > Kirsty > > ---------- > > > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.1.408 / Virus Database: 268.13.2/472 - Release Date: > 10/11/2006 > > > > > > Quote Link to comment Share on other sites More sharing options...
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