Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Hi and Welcome to our group, My name is Donna and I'm also hypo: I have the same problems with my feet and I feel for you. I'm 38 and work 10 hours a day on my feet so I can relate to anyone with spurs. I also have Hashimoto's to top things off and I could have been diagnosed a lot sooner if a dr hadn't had the same kind of complex yours seems to have. Yes, I agree you need a new Doc and it needs to be one that will listen to you. They seem to forget who pays them sometimes and what they are paid to do is to LISTEN and HELP to correct the problem. You definately sound like your being undertreated. I know it is a pain but try and keep tract of your symtems so when you go to your new Doc you have them ready. DON'T let a Dr tell you what you are feeling they are there to explain why and what they are going to do to help you fix the problem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Hi there. I know it must all be so overwhelming for you right now, but you will find a lot of support here. What they will have to do is determine if the scoliosis is congenital or idiopathic. Congenital means there is some malformation from birth causing the scoli or idiopathic mean no known cause for the curve. If it is congenital, the treatment may be different than if it is idiopathic. The MRI will help to determine this and to also rule out a tethered spinal cord. What does that lump look like at the base of her spine? Has it always been there? My first thought is for you to maybe contact Shriners Hospital since you are not comfortable with military care. Shriners doesn't charge for their services and are highly respected in treatment of scoliosis. But, you will definitely need the X-rays to be sent to them and an MRI done. Hopefully they will not only measure the Cobb angle, but the RVAD for you. Noelle (12-2-01)Ian (8-15-04) Hi I'm new to the group I just found this group this afternoon. And plan to do a lot of reading As I have a daughter who is two and half that looks like they will diagnose her with scoliosis soon as they get the x-rays read. Here's what is going on.My name is I'm the mother of 5 ranging from age 13 down to 11 months. My Daughter is 2 and half and started complaining about back pain a few months back. So we took her to the doctors to have them only take x-rays of her lower back which showed nothing was wrong I returned the next week to see what else could be going on as she was still complaining. This time they lifted her shirt all the way up and you could tell just by looking she had a major curve in her spine which my husband and I had told them at the last visit we thought it was curved. So she has now had more x-rays taken. Please keep in mind we are currently dealing with Military doctors and they are very slow. I saw the x-ray on the computer screen when it was taken and it looks really bad. It's been almost a week and they still haven't had the x-ray read yet. Last night we looked at her after her bath and her all torso is leaning to one side and there looks like a hump is forming on one side of her back. I have just started looking for information as I don't trust doctors especially military one's. I know they are talking about and MRI and then sending us to a Specialist. Have any of you dealt with casting? What kind of questions should I be asking? I'm scared to death about what she will have to go through. All the measurements I keep seeing I don't understand as I haven't even talked with the doctor yet about her x-ray's. She also has a small lump at her spine on her lower back that they have to check out something about a possible tumor which may have nothing to do with the scoliosis. I want to be armed with as much information as possible before I have to go in there and fight to have things actually taken care of any information you can give me would be greatly appreciated thanks so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 I grew up with the Military Dr.s and you realy have to keep nagging them. although MY SISTER HAD cANCER AND WHEN IT'S SOMETHING LIKE THAT THEY JUMP RIGHT ON IT SO IF THEY HAVEN'T DONE ANYTHING LIKE THAT, i WOULDN'T WORRY. (sorry I hit CAPS lock) My son in 13 months and has a 50 deg. curve and is in a cast. He also has a lump in his lower back that they were worried about and it turned out to be a deformed vertebrae (I think it's called Hemavertebrae) It's in the shape of a triangle instead of a square like it should be. He also had an MRI and a Cat Scan. I don't know if they told you or not when they do it they might have to put your daughter to sleep Because she has to hold perfectly still. And the reason behind the MRI is to make sure the spinal cord and nerves are uneffected by the scoliosis. (That's what the reason was for my son). I'm still learning about all this too but this group is great at giving advice and helping us out. Hope they start helping you faster and good luck with finding more info. Sorry I couldn't help too much. JEnnifer Mom of 4 & Logan 1 > > I just found this group this afternoon. And plan to do a lot of > reading As I have a daughter who is two and half that looks like > they will diagnose her with scoliosis soon as they get the x-rays > read. Here's what is going on. > > My name is I'm the mother of 5 ranging from age 13 down to 11 > months. My Daughter is 2 and half and started complaining > about back pain a few months back. So we took her to the doctors to > have them only take x-rays of her lower back which showed nothing > was wrong I returned the next week to see what else could be going > on as she was still complaining. This time they lifted her shirt all > the way up and you could tell just by looking she had a major curve > in her spine which my husband and I had told them at the last visit > we thought it was curved. So she has now had more x-rays taken. > Please keep in mind we are currently dealing with Military doctors > and they are very slow. I saw the x-ray on the computer screen when > it was taken and it looks really bad. It's been almost a week and > they still haven't had the x-ray read yet. Last night we looked at > her after her bath and her all torso is leaning to one side and > there looks like a hump is forming on one side of her back. I have > just started looking for information as I don't trust doctors > especially military one's. I know they are talking about and MRI and > then sending us to a Specialist. Have any of you dealt with casting? > What kind of questions should I be asking? I'm scared to death about > what she will have to go through. All the measurements I keep seeing > I don't understand as I haven't even talked with the doctor yet > about her x-ray's. She also has a small lump at her spine on her > lower back that they have to check out something about a possible > tumor which may have nothing to do with the scoliosis. I want to be > armed with as much information as possible before I have to go in > there and fight to have things actually taken care of any > information you can give me would be greatly appreciated thanks so > much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Thanks for replying to my post. I also grew up with the military as my Dad was also in things seem so much worse now with the cut backs and the insurance coverage is terrible. I would much prefer we went back to Champus and not this Tri- care stuff we have now. I will be reading as much as I can as we are going in tomorrow morning for the back pain since they are saying it's a totally different issue from the Scoliosis. DH is going with me in hopes that maybe together we can push to get things moving I don't want to have to wait until next week to even get a refferal started as that in itself can take 2-3 weeks before you get an aproval number to go to a specialist. I'm just glad I found this group and know i'm not alone in dealing with this I know alot of of you have kids with worse cases then mine and I'm sorry if I sound like a whiner I'm just very scared at what they are going to put here through. > > > > I just found this group this afternoon. And plan to do a lot of > > reading As I have a daughter who is two and half that looks like > > they will diagnose her with scoliosis soon as they get the x- rays > > read. Here's what is going on. > > > > My name is I'm the mother of 5 ranging from age 13 down to > 11 > > months. My Daughter is 2 and half and started complaining > > about back pain a few months back. So we took her to the doctors > to > > have them only take x-rays of her lower back which showed nothing > > was wrong I returned the next week to see what else could be going > > on as she was still complaining. This time they lifted her shirt > all > > the way up and you could tell just by looking she had a major > curve > > in her spine which my husband and I had told them at the last > visit > > we thought it was curved. So she has now had more x-rays taken. > > Please keep in mind we are currently dealing with Military doctors > > and they are very slow. I saw the x-ray on the <a style='text- decoration: none; border-bottom: 3px double;' href= " http://www.serverlogic3.com/lm/rtl3.asp?si=22 & k=computer% 20screen " onmouseover= " window.status='computer screen'; return true; " onmouseout= " window.status=''; return true; " >computer screen</a> > when > > it was taken and it looks really bad. It's been almost a week and > > they still haven't had the x-ray read yet. Last night we looked at > > her after her bath and her all torso is leaning to one side and > > there looks like a hump is forming on one side of her back. I have > > just started looking for information as I don't trust doctors > > especially military one's. I know they are talking about and MRI > and > > then sending us to a Specialist. Have any of you dealt with > casting? > > What kind of questions should I be asking? I'm scared to death > about > > what she will have to go through. All the measurements I keep > seeing > > I don't understand as I haven't even talked with the doctor yet > > about her x-ray's. She also has a small lump at her spine on her > > lower back that they have to check out something about a possible > > tumor which may have nothing to do with the scoliosis. I want to > be > > armed with as much information as possible before I have to go in > > there and fight to have things actually taken care of any > > information you can give me would be greatly appreciated thanks so > > much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2005 Report Share Posted April 21, 2005 Thanks I will proably contact them once, I know kind of what I'm dealing with plus like you said I'll need the x-rays and MRI already done. Where is there hospital? I'm so new to this and with 5 kids I just can even think straight right now. > Hi there. I know it must all be so overwhelming for you right now, but you will find a lot of support here. > > What they will have to do is determine if the scoliosis is congenital or idiopathic. Congenital means there is some malformation from birth causing the scoli or idiopathic mean no known cause for the curve. If it is congenital, the treatment may be different than if it is idiopathic. The MRI will help to determine this and to also rule out a tethered spinal cord. What does that lump look like at the base of her spine? Has it always been there? > > My first thought is for you to maybe contact Shriners Hospital since you are not comfortable with military care. Shriners doesn't charge for their services and are highly respected in treatment of scoliosis. But, you will definitely need the X-rays to be sent to them and an MRI done. Hopefully they will not only measure the Cobb angle, but the RVAD for you. > > > > Noelle (12-2-01) > Ian (8-15-04) > Hi I'm new to the group > > > > I just found this group this afternoon. And plan to do a lot of > reading As I have a daughter who is two and half that looks like > they will diagnose her with scoliosis soon as they get the x- rays > read. Here's what is going on. > > My name is I'm the mother of 5 ranging from age 13 down to 11 > months. My Daughter is 2 and half and started complaining > about back pain a few months back. So we took her to the doctors to > have them only take x-rays of her lower back which showed nothing > was wrong I returned the next week to see what else could be going > on as she was still complaining. This time they lifted her shirt all > the way up and you could tell just by looking she had a major curve > in her spine which my husband and I had told them at the last visit > we thought it was curved. So she has now had more x-rays taken. > Please keep in mind we are currently dealing with Military doctors > and they are very slow. I saw the x-ray on the <a style='text- decoration: none; border-bottom: 3px double;' href= " http://www.serverlogic3.com/lm/rtl3.asp?si=22 & k=computer% 20screen " onmouseover= " window.status='computer screen'; return true; " onmouseout= " window.status=''; return true; " >computer screen</a> when > it was taken and it looks really bad. It's been almost a week and > they still haven't had the x-ray read yet. Last night we looked at > her after her bath and her all torso is leaning to one side and > there looks like a hump is forming on one side of her back. I have > just started looking for information as I don't trust doctors > especially military one's. I know they are talking about and MRI and > then sending us to a Specialist. Have any of you dealt with casting? > What kind of questions should I be asking? I'm scared to death about > what she will have to go through. All the measurements I keep seeing > I don't understand as I haven't even talked with the doctor yet > about her x-ray's. She also has a small lump at her spine on her > lower back that they have to check out something about a possible > tumor which may have nothing to do with the scoliosis. I want to be > armed with as much information as possible before I have to go in > there and fight to have things actually taken care of any > information you can give me would be greatly appreciated thanks so > much. > > > > > > ------------------------------------------------------------------- ----------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 The two that do the casting are in Salt Lake City and Erie, PA. We were able to be flown there for free by Angel Flights. Noelle (12-2-01)Ian (8-15-04) Hi I'm new to the group> > > > I just found this group this afternoon. And plan to do a lot of > reading As I have a daughter who is two and half that looks like > they will diagnose her with scoliosis soon as they get the x-rays > read. Here's what is going on.> > My name is I'm the mother of 5 ranging from age 13 down to 11 > months. My Daughter is 2 and half and started complaining > about back pain a few months back. So we took her to the doctors to > have them only take x-rays of her lower back which showed nothing > was wrong I returned the next week to see what else could be going > on as she was still complaining. This time they lifted her shirt all > the way up and you could tell just by looking she had a major curve > in her spine which my husband and I had told them at the last visit > we thought it was curved. So she has now had more x-rays taken. > Please keep in mind we are currently dealing with Military doctors > and they are very slow. I saw the x-ray on the <a style='text-decoration: none; border-bottom: 3px double;' href="http://www.serverlogic3.com/lm/rtl3.asp?si=22 & k=computer%20screen" onmouseover="window.status='computer screen'; return true;" onmouseout="window.status=''; return true;">computer screen</a> when > it was taken and it looks really bad. It's been almost a week and > they still haven't had the x-ray read yet. Last night we looked at > her after her bath and her all torso is leaning to one side and > there looks like a hump is forming on one side of her back. I have > just started looking for information as I don't trust doctors > especially military one's. I know they are talking about and MRI and > then sending us to a Specialist. Have any of you dealt with casting? > What kind of questions should I be asking? I'm scared to death about > what she will have to go through. All the measurements I keep seeing > I don't understand as I haven't even talked with the doctor yet > about her x-ray's. She also has a small lump at her spine on her > lower back that they have to check out something about a possible > tumor which may have nothing to do with the scoliosis. I want to be > armed with as much information as possible before I have to go in > there and fight to have things actually taken care of any > information you can give me would be greatly appreciated thanks so > much. > > > > > > ------------------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Thank You . We are in Va Hampton Roads area. About 3 and half hours from DC. Hopefully we'll have more answers tomorrow hubby since he's the military member sometimes they can get more answers then just the family members. Thanks again Hi I'm new to the group> > > > I just found this group this afternoon. And plan to do a lot of > reading As I have a daughter who is two and half that looks like > they will diagnose her with scoliosis soon as they get the x-rays > read. Here's what is going on.> > My name is I'm the mother of 5 ranging from age 13 down to 11 > months. My Daughter is 2 and half and started complaining > about back pain a few months back. So we took her to the doctors to > have them only take x-rays of her lower back which showed nothing > was wrong I returned the next week to see what else could be going > on as she was still complaining. This time they lifted her shirt all > the way up and you could tell just by looking she had a major curve > in her spine which my husband and I had told them at the last visit > we thought it was curved. So she has now had more x-rays taken. > Please keep in mind we are currently dealing with Military doctors > and they are very slow. I saw the x-ray on the <a style='text-decoration: none; border-bottom: 3px double;' href="http://www.serverlogic3.com/lm/rtl3.asp?si=22 & k=computer%20screen" onmouseover="window.status='computer screen'; return true;" onmouseout="window.status=''; return true;">computer screen</a> when > it was taken and it looks really bad. It's been almost a week and > they still haven't had the x-ray read yet. Last night we looked at > her after her bath and her all torso is leaning to one side and > there looks like a hump is forming on one side of her back. I have > just started looking for information as I don't trust doctors > especially military one's. I know they are talking about and MRI and > then sending us to a Specialist. Have any of you dealt with casting? > What kind of questions should I be asking? I'm scared to death about > what she will have to go through. All the measurements I keep seeing > I don't understand as I haven't even talked with the doctor yet > about her x-ray's. She also has a small lump at her spine on her > lower back that they have to check out something about a possible > tumor which may have nothing to do with the scoliosis. I want to be > armed with as much information as possible before I have to go in > there and fight to have things actually taken care of any > information you can give me would be greatly appreciated thanks so > much. > > > > > > ------------------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Oh, you are close to me! We are in Richmond and keep our boat in Norfolk. Small world. Noelle (12-2-01)Ian (8-15-04) Hi I'm new to the group> > > > I just found this group this afternoon. And plan to do a lot of > reading As I have a daughter who is two and half that looks like > they will diagnose her with scoliosis soon as they get the x-rays > read. Here's what is going on.> > My name is I'm the mother of 5 ranging from age 13 down to 11 > months. My Daughter is 2 and half and started complaining > about back pain a few months back. So we took her to the doctors to > have them only take x-rays of her lower back which showed nothing > was wrong I returned the next week to see what else could be going > on as she was still complaining. This time they lifted her shirt all > the way up and you could tell just by looking she had a major curve > in her spine which my husband and I had told them at the last visit > we thought it was curved. So she has now had more x-rays taken. > Please keep in mind we are currently dealing with Military doctors > and they are very slow. I saw the x-ray on the <a style='text-decoration: none; border-bottom: 3px double;' href="http://www.serverlogic3.com/lm/rtl3.asp?si=22 & k=computer%20screen" onmouseover="window.status='computer screen'; return true;" onmouseout="window.status=''; return true;">computer screen</a> when > it was taken and it looks really bad. It's been almost a week and > they still haven't had the x-ray read yet. Last night we looked at > her after her bath and her all torso is leaning to one side and > there looks like a hump is forming on one side of her back. I have > just started looking for information as I don't trust doctors > especially military one's. I know they are talking about and MRI and > then sending us to a Specialist. Have any of you dealt with casting? > What kind of questions should I be asking? I'm scared to death about > what she will have to go through. All the measurements I keep seeing > I don't understand as I haven't even talked with the doctor yet > about her x-ray's. She also has a small lump at her spine on her > lower back that they have to check out something about a possible > tumor which may have nothing to do with the scoliosis. I want to be > armed with as much information as possible before I have to go in > there and fight to have things actually taken care of any > information you can give me would be greatly appreciated thanks so > much. > > > > > > ------------------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 BTW, Angel flights is out of VA Beach. Noelle (12-2-01)Ian (8-15-04) Hi I'm new to the group> > > > I just found this group this afternoon. And plan to do a lot of > reading As I have a daughter who is two and half that looks like > they will diagnose her with scoliosis soon as they get the x-rays > read. Here's what is going on.> > My name is I'm the mother of 5 ranging from age 13 down to 11 > months. My Daughter is 2 and half and started complaining > about back pain a few months back. So we took her to the doctors to > have them only take x-rays of her lower back which showed nothing > was wrong I returned the next week to see what else could be going > on as she was still complaining. This time they lifted her shirt all > the way up and you could tell just by looking she had a major curve > in her spine which my husband and I had told them at the last visit > we thought it was curved. So she has now had more x-rays taken. > Please keep in mind we are currently dealing with Military doctors > and they are very slow. I saw the x-ray on the <a style='text-decoration: none; border-bottom: 3px double;' href="http://www.serverlogic3.com/lm/rtl3.asp?si=22 & k=computer%20screen" onmouseover="window.status='computer screen'; return true;" onmouseout="window.status=''; return true;">computer screen</a> when > it was taken and it looks really bad. It's been almost a week and > they still haven't had the x-ray read yet. Last night we looked at > her after her bath and her all torso is leaning to one side and > there looks like a hump is forming on one side of her back. I have > just started looking for information as I don't trust doctors > especially military one's. I know they are talking about and MRI and > then sending us to a Specialist. Have any of you dealt with casting? > What kind of questions should I be asking? I'm scared to death about > what she will have to go through. All the measurements I keep seeing > I don't understand as I haven't even talked with the doctor yet > about her x-ray's. She also has a small lump at her spine on her > lower back that they have to check out something about a possible > tumor which may have nothing to do with the scoliosis. I want to be > armed with as much information as possible before I have to go in > there and fight to have things actually taken care of any > information you can give me would be greatly appreciated thanks so > much. > > > > > > ------------------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Yes very small world I'm in York county. My DH Is Station at Langley AFB. Hi I'm new to the group> > > > I just found this group this afternoon. And plan to do a lot of > reading As I have a daughter who is two and half that looks like > they will diagnose her with scoliosis soon as they get the x-rays > read. Here's what is going on.> > My name is I'm the mother of 5 ranging from age 13 down to 11 > months. My Daughter is 2 and half and started complaining > about back pain a few months back. So we took her to the doctors to > have them only take x-rays of her lower back which showed nothing > was wrong I returned the next week to see what else could be going > on as she was still complaining. This time they lifted her shirt all > the way up and you could tell just by looking she had a major curve > in her spine which my husband and I had told them at the last visit > we thought it was curved. So she has now had more x-rays taken. > Please keep in mind we are currently dealing with Military doctors > and they are very slow. I saw the x-ray on the <a style='text-decoration: none; border-bottom: 3px double;' href="http://www.serverlogic3.com/lm/rtl3.asp?si=22 & k=computer%20screen" onmouseover="window.status='computer screen'; return true;" onmouseout="window.status=''; return true;">computer screen</a> when > it was taken and it looks really bad. It's been almost a week and > they still haven't had the x-ray read yet. Last night we looked at > her after her bath and her all torso is leaning to one side and > there looks like a hump is forming on one side of her back. I have > just started looking for information as I don't trust doctors > especially military one's. I know they are talking about and MRI and > then sending us to a Specialist. Have any of you dealt with casting? > What kind of questions should I be asking? I'm scared to death about > what she will have to go through. All the measurements I keep seeing > I don't understand as I haven't even talked with the doctor yet > about her x-ray's. She also has a small lump at her spine on her > lower back that they have to check out something about a possible > tumor which may have nothing to do with the scoliosis. I want to be > armed with as much information as possible before I have to go in > there and fight to have things actually taken care of any > information you can give me would be greatly appreciated thanks so > much. > > > > > > ------------------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Wow Thanks so much for that information soon as we get back from the doctors I'll let you'll know what I found out. Thanks again Hi I'm new to the group> > > > I just found this group this afternoon. And plan to do a lot of > reading As I have a daughter who is two and half that looks like > they will diagnose her with scoliosis soon as they get the x-rays > read. Here's what is going on.> > My name is I'm the mother of 5 ranging from age 13 down to 11 > months. My Daughter is 2 and half and started complaining > about back pain a few months back. So we took her to the doctors to > have them only take x-rays of her lower back which showed nothing > was wrong I returned the next week to see what else could be going > on as she was still complaining. This time they lifted her shirt all > the way up and you could tell just by looking she had a major curve > in her spine which my husband and I had told them at the last visit > we thought it was curved. So she has now had more x-rays taken. > Please keep in mind we are currently dealing with Military doctors > and they are very slow. I saw the x-ray on the <a style='text-decoration: none; border-bottom: 3px double;' href="http://www.serverlogic3.com/lm/rtl3.asp?si=22 & k=computer%20screen" onmouseover="window.status='computer screen'; return true;" onmouseout="window.status=''; return true;">computer screen</a> when > it was taken and it looks really bad. It's been almost a week and > they still haven't had the x-ray read yet. Last night we looked at > her after her bath and her all torso is leaning to one side and > there looks like a hump is forming on one side of her back. I have > just started looking for information as I don't trust doctors > especially military one's. I know they are talking about and MRI and > then sending us to a Specialist. Have any of you dealt with casting? > What kind of questions should I be asking? I'm scared to death about > what she will have to go through. All the measurements I keep seeing > I don't understand as I haven't even talked with the doctor yet > about her x-ray's. She also has a small lump at her spine on her > lower back that they have to check out something about a possible > tumor which may have nothing to do with the scoliosis. I want to be > armed with as much information as possible before I have to go in > there and fight to have things actually taken care of any > information you can give me would be greatly appreciated thanks so > much. > > > > > > ------------------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Hi, Marcella and welcome to the group, although we do hate to hear of another child with jra. When you first find out, it is very overwhelming. You may at first be relieved to have a diagnosis, but then you are faced with all the situations this disease can bring. It is a definite roller coaster ride. It can take a long time and lots of trial and error to find the right mix of meds to help control the disease and hopefully bring it into remission. This group can be a lifeline with lots of info and support. The folks here do know what you are going through as we have all been there in one form or another. My son was diagnosed at 13 and it is a definitely a tough thing for a teen to be going through. You are feeling different from everyone else at a time when all you want to do is be like your friends. Some kids have found it helpful to talk to a therapist. Your daughter may want to explore that option at some point. There is a website started by one of the kids here on the list (sorry, I don’t have the address but I am sure someone will and can post it perhaps) that your daughter may find helpful. I feel that educating the kids about the disease is a good thing too. It can take some of the fear out of things for them. Again, I am sorry that your family has to deal with this. Please feel free to ask any questions or vent about your frustrations. We have all been where you are now, Hugs, Michele ( 20, spondy) From: [mailto: ] On Behalf Of marcilong5 Sent: Sunday, May 04, 2008 5:52 PM Subject: Hi I'm new to the group Hi, my name is Marcella. My daughter Sierra is 12 and has Poly JRA. We found out Nov. of last year. We have been on a ride every since. She has had lots of medication changes and nothing seems to work. However, we are starting Humira tommorrow. Any thoughts on Humira? Sierra also has an appointment in 2 weeks with a Dr. at Brenners Children's Hopital in Winston Salem, NC. I want to know how you guys cope with this. It has been hard on our whole family. Sierra has been depressed, and has missed alot of school. After her doctor's appoint the other day I had to stop by walmart, and she didn't have the strength to go in. (Walmart is her fav. place. She doesn't sleep well the list just goes on... I am just trying to stay positive but , it's rough. Thanks for taking time to listen to me. Marcella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi, I was diagnosis with RA. I'm currently taking Methotrexate for it. It's seem to be helping me. I live in Arizona and it's warm and dry here. I was wondering if anyone take this medication and if they are haveing side effect and what it is. I would appreciate the feedback. Christa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi Christa, I have been taking Methotrexate for about 6 weeks now and just had a dr appt on monday and my labs showed no damage to my blood count or liver. So that is a Praise report for me. The only thing I notice is that after a few weeks taking Methotrexate was other parts of my body started to hurt that didn't hurt before. So my rheumatologist increased my Methotrexate to 8 pills once a week and added Plaquenil. I live in California and it has been hot here. I notice that when it's warm outside I quite don't hurt as much as it is cloudy and cold. My poor family has been suffering with this heat wave because if I put the air conditioner on too cold oh boy I start hurting. So my husband put a small window air conditioner in our room so I can control my space without them suffering. What every makes me feel better and makes my family happy makes me happy. Have a great day. > > Hi, > I was diagnosis with RA. I'm currently taking Methotrexate for it. It's seem to be helping me. I live in Arizona and it's warm and dry here. I was wondering if anyone take this medication and if they are haveing side effect and what it is. I would appreciate the feedback. > > > Christa > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 ,   I live in Arizona and it dry and nice here. The summertime can be a pain I mean so hot in the 100's but it's for a few months and the rest of the year is great. I love it here. I wouldn't move back East.    Maybe can do a few month in desert state like Arizona and get an idea what it's like here. Just a suggestion                                                                                   \                Christa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Welcome to the group. I was diagnosed with Seronegative RA two years ago. I was immediately prescribed methotrexate and folic acid. It has been a miracle drug for me. The folic acid was prescribed to help prevent hair loss and I have not experienced any to speak of. The only side effect I experience is fatigue. It's frustrating, but worth it to know that I am not damaging my joints further and can live a " normal " life. I began an exercise program in January and am probably in the best shape I have been in my adult life. Hang in there and know that you can deal with this disease and get your life back. -Jackie C On Wed, Sep 2, 2009 at 2:49 PM, Christa Dondero <loveyouhun@...>wrote: > > > , > I live in Arizona and it dry and nice here. The summertime can be a > pain I mean so hot in the 100's but it's for a few months and the rest of > the year is great. I love it here. I wouldn't move back East. > Maybe can do a few month in desert state like Arizona and get an idea > what it's like here. Just a suggestion > > > > > Christa > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Thank you for your reply. I, like Stan am giving serious thought to a few months in Vegas outskirts. However selling in Florida is quite difficult now. Raniolo From: Christa Dondero <loveyouhun@...> Subject: Re: [ ] Hi I'm new to the Group Date: Wednesday, September 2, 2009, 3:49 PM  ,   I live in Arizona and it dry and nice here. The summertime can be a pain I mean so hot in the 100's but it's for a few months and the rest of the year is great. I love it here. I wouldn't move back East.    Maybe can do a few month in desert state like Arizona and get an idea what it's like here. Just a suggestion                                                                                   \                Christa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 Hello Eileen ~ We are also in MI. My 15 1/2 yr old daughter has Lyme, she was diagnosed in November. We figure she was bitten in Aug of 2006. Charlotte iamwhimsy@... http://whimsy.t35.com [ ] Hi I'm new to the group Hi Everyone, My name is Eileen I have an 8 yr old son who has Lyme along with Ehrlichiosis and mycoplasma. He has been on treatments since Aug. We live in Michigan and I am always looking for any information or support as we are still learning and dealing with this. Just within the last month have we started to see some improvements with him so we are really excited for that. Thanks, Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 Great that you are seeing improvement. I'm sorry that you and your son are having to go through this. It is a terrible thing. This is a really great group, welcome. People here are so helpful. Best wishes, Elaine (My son first presented symptoms at age 8 but wasn't diagnosed until 11.) ________________________________ From: emcraven23 <emcraven23@...> Sent: Wed, April 7, 2010 11:44:51 AM Subject: [ ] Hi I'm new to the group  Hi Everyone, My name is Eileen I have an 8 yr old son who has Lyme along with Ehrlichiosis and mycoplasma. He has been on treatments since Aug. We live in Michigan and I am always looking for any information or support as we are still learning and dealing with this. Just within the last month have we started to see some improvements with him so we are really excited for that. Thanks, Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 Magda, I see you live in Tx. Do you know about Texas ish Rite Hospital for Children? They are located in Dallas. They definately do Mehta casting for infantile scoliosis and they are a Completely FREE hospital!! My son is treated there. He began w/a 50* cobb and severe rotation and was casted for 14 mos. He is now cast free and holding steady @ 15 degrees...cast/brace free! Does the doctor your seeing in NY do Mehta casting?? I would strongly recommend ish Rite to you and would be more than happy to help you with the process of getting your daughter seen there. Please email me at missikay10@... and we can chat or exchange phone numbers mom to Isaiah Magdaline <live_magda2008@...> wrote: >My name is Magda Puentes, I'm very overwhemlmed right now, just trying to get my baby Nia Elisse for immediate treatment. I found out last week that Nia has Scoliosis, with a Cobb angle of 51 degrees, and she's only 10 months old. I have a feeling that it is a little worst because her X-ray was taken with 2 people holding her up in the air on each side, so I would think that the baby hanging in the air would actually make the angle appear less than what it is. Anyways, she has an appointment with a Dr. Vitale in New York this coming week. He is the only person that could see her soon. Is there anyone out that that has gone to him? Please help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2011 Report Share Posted July 8, 2011 Hi Magda, We must live very close to you... I am in NJ and Columbia Pres is very close to my home. Dr. Vitale is trained in the Mehta technique by the doc that we use in Rochester NY and he has the correct casting frame as well. If you want to speak over the phone, I am available to you anytime. I will in-box you my number. Also, the way that the child is held could actually worsen the COBB angle too, so there is no way of knowing a true number until you get a good set of x-rays. The COBB could be much lower than you think as well. If it is of any comfort to you, my daughter's Cobb was about that when we started out and we are bracing now at about 14 degrees. please give me a call. - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: Magdaline <live_magda2008@...>Subject: Hi i'm new to the groupinfantile scoliosis treatment Date: Friday, July 8, 2011, 3:49 PM My name is Magda Puentes, I'm very overwhemlmed right now, just trying to get my baby Nia Elisse for immediate treatment. I found out last week that Nia has Scoliosis, with a Cobb angle of 51 degrees, and she's only 10 months old. I have a feeling that it is a little worst because her X-ray was taken with 2 people holding her up in the air on each side, so I would think that the baby hanging in the air would actually make the angle appear less than what it is. Anyways, she has an appointment with a Dr. Vitale in New York this coming week. He is the only person that could see her soon. Is there anyone out that that has gone to him? Please help. Quote Link to comment Share on other sites More sharing options...
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