Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I am so sorry, but I have to disagree with some of what you posted. Dr. (http://www.uveitis.org) constantly stresses that too many ophthalmologists are alright with controlling Uveitis instead of trying to cure it. He said that is one of the most dangerous things to do. This is why we chose to actually include him in Sophie's medical care instead of being alright with our doctor (the Lyons Eye Center's Uveitis specialist) constantly saying, " She isn't any worse so let's stay the course, " . He isn't alright with a child remaining in a constant flare situation - no matter how slight it might be. That is how most damage occurs over the long haul. He is extremely aggressive in treatment and whole-hearted believes that a medication free remission is possible by treating the patients with immunosuppresing drugs and " retraining " the body's immune system. I hope I haven't ruffled any feathers by posting this. You have a lot of supportive words to share. Since I am dealing with my daughter's recent decent into being legally blind, I wanted to make sure that the wrong message isn't sent to a parent who is new to this fight. I just want to make sure to save another family from the heartbreak ours has been experiencing. You are right in that it is wonderful for your daughter's eyes not to have worsened. However, I truly hope Emma's Uveitis is able to be put into some sort of remission instead of just controlled. Professional Mom to: Sophie (5) - pauci/panuveitis " JIA Super Fighter " Charlie (17 mos.) - " The Bird! " http://www.caringbridge.org/visit/teamsophie On 1/11/07, Calhoun <bathlizzy@...> wrote: > > Christie, > > My daughter Emma Kate was diagnosed pauci at age 2, poly by age 6, and has > been dealing with iritis for about a year and a half. Emma Kate originally > had a negative ANA, then was tested again at 6 and tested positive. The > doctors said it is unusual, but not unheard of. > I just wanted to tell you that in this disease, you will learn to measure > success in smaller increments than you ever did before. We now, after a year > and a half, are happy if we go to the doctor and things are the same as last > time. I think I stopped looking for " she's doing better " about 6 months ago, > and just became happy with " she's not any worse " . Emma Kate was put on > Methotrexate primarily because her eyes were flaring so badly. She has been > on it a year in December. > At one point, we were dilating her eyes twice daily and putting the eye > drops in every hour on the hour. Her new opthalmologist (we found him in > March) specializes in Uveitis, so that's a huge blessing and he is > wonderful, but he has told me again and again that this is a disease that > requires fairly constant vigilance and incremental modifications in meds. > Controlling, not curing, is the key. Emma Kate does have some damage from > the meds already (cataracts, but very early stage) but her doctor has often > reminded me that cataracts can be corrected later....blindness can't. > > Just wanted to say that I felt much like you last year, but as a parent of > a chronically ill child, I'm sure you know that in time you can become > accustomed to anything. Our visits have become much less stressful since I > let go of trying to control this, and just trusted the doctors. My only job > is to help Emma Kate manage her disease and all the emotions that go with it > as well as possible. My thoughts and prayers are with you guys!!! Lots of > love! > > (Emma Kate, poly, age 7) > > --------------------------------- > Cheap Talk? Check out Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I want to rephrase the second sentence of my prior post. Uveitis can NEVER be cured. However, it can be put into remission and then the body's immune system retrained not to attack itself. The hope is that other flares are less likely once such a thing has been achieved. I balked that I used the term " cure " in association with Uveitis. Make no mistake that it is - as I said previously - a life long battle for our children. That being said, absolutely every measure should be taken to get their eyes in remission once a flare has started. Professional Mom to: Sophie (5) - pauci/panuveitis " JIA Super Fighter " Charlie (17 mos.) - " The Bird! " http://www.caringbridge.org/visit/teamsophie On 1/11/07, Weber <teamsophie@...> wrote: > > I am so sorry, but I have to disagree with some of what you posted. > Dr. (http://www.uveitis.org) constantly stresses that too many > ophthalmologists are alright with controlling Uveitis instead of trying to > cure it. He said that is one of the most dangerous things to do. This is > why we chose to actually include him in Sophie's medical care instead of > being alright with our doctor (the Lyons Eye Center's Uveitis specialist) > constantly saying, " She isn't any worse so let's stay the course, " . He > isn't alright with a child remaining in a constant flare situation - no > matter how slight it might be. That is how most damage occurs over the long > haul. He is extremely aggressive in treatment and whole-hearted believes > that a medication free remission is possible by treating the patients with > immunosuppresing drugs and " retraining " the body's immune system. > > I hope I haven't ruffled any feathers by posting this. You have a lot of > supportive words to share. Since I am dealing with my daughter's recent > decent into being legally blind, I wanted to make sure that the wrong > message isn't sent to a parent who is new to this fight. I just want to > make sure to save another family from the heartbreak ours has been > experiencing. > > You are right in that it is wonderful for your daughter's eyes not to have > worsened. However, I truly hope Emma's Uveitis is able to be put into some > sort of remission instead of just controlled. > > > Professional Mom to: > Sophie (5) - pauci/panuveitis " JIA Super Fighter " > Charlie (17 mos.) - " The Bird! " > http://www.caringbridge.org/visit/teamsophie > > > > On 1/11/07, Calhoun <bathlizzy@...> wrote: > > > > Christie, > > > > My daughter Emma Kate was diagnosed pauci at age 2, poly by age 6, and > > has been dealing with iritis for about a year and a half. Emma Kate > > originally had a negative ANA, then was tested again at 6 and tested > > positive. The doctors said it is unusual, but not unheard of. > > I just wanted to tell you that in this disease, you will learn to > > measure success in smaller increments than you ever did before. We now, > > after a year and a half, are happy if we go to the doctor and things are the > > same as last time. I think I stopped looking for " she's doing better " about > > 6 months ago, and just became happy with " she's not any worse " . Emma Kate > > was put on Methotrexate primarily because her eyes were flaring so badly. > > She has been on it a year in December. > > At one point, we were dilating her eyes twice daily and putting the eye > > drops in every hour on the hour. Her new opthalmologist (we found him in > > March) specializes in Uveitis, so that's a huge blessing and he is > > wonderful, but he has told me again and again that this is a disease that > > requires fairly constant vigilance and incremental modifications in meds. > > Controlling, not curing, is the key. Emma Kate does have some damage from > > the meds already (cataracts, but very early stage) but her doctor has often > > reminded me that cataracts can be corrected later....blindness can't. > > > > Just wanted to say that I felt much like you last year, but as a parent > > of a chronically ill child, I'm sure you know that in time you can become > > accustomed to anything. Our visits have become much less stressful since I > > let go of trying to control this, and just trusted the doctors. My only job > > is to help Emma Kate manage her disease and all the emotions that go with it > > as well as possible. My thoughts and prayers are with you guys!!! Lots of > > love! > > > > (Emma Kate, poly, age 7) > > > > --------------------------------- > > Cheap Talk? Check out Messenger's low PC-to-Phone call rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I agree !!! Donna Re: Iritis Diagnosis I want to rephrase the second sentence of my prior post. Uveitis can NEVER be cured. However, it can be put into remission and then the body's immune system retrained not to attack itself. The hope is that other flares are less likely once such a thing has been achieved. I balked that I used the term " cure " in association with Uveitis. Make no mistake that it is - as I said previously - a life long battle for our children. That being said, absolutely every measure should be taken to get their eyes in remission once a flare has started. Professional Mom to: Sophie (5) - pauci/panuveitis " JIA Super Fighter " Charlie (17 mos.) - " The Bird! " http://www.caringbridge.org/visit/teamsophie On 1/11/07, Weber <teamsophie@...> wrote: > > I am so sorry, but I have to disagree with some of what you posted. > Dr. (http://www.uveitis.org) constantly stresses that too many > ophthalmologists are alright with controlling Uveitis instead of trying to > cure it. He said that is one of the most dangerous things to do. This is > why we chose to actually include him in Sophie's medical care instead of > being alright with our doctor (the Lyons Eye Center's Uveitis specialist) > constantly saying, " She isn't any worse so let's stay the course, " . He > isn't alright with a child remaining in a constant flare situation - no > matter how slight it might be. That is how most damage occurs over the long > haul. He is extremely aggressive in treatment and whole-hearted believes > that a medication free remission is possible by treating the patients with > immunosuppresing drugs and " retraining " the body's immune system. > > I hope I haven't ruffled any feathers by posting this. You have a lot of > supportive words to share. Since I am dealing with my daughter's recent > decent into being legally blind, I wanted to make sure that the wrong > message isn't sent to a parent who is new to this fight. I just want to > make sure to save another family from the heartbreak ours has been > experiencing. > > You are right in that it is wonderful for your daughter's eyes not to have > worsened. However, I truly hope Emma's Uveitis is able to be put into some > sort of remission instead of just controlled. > > > Professional Mom to: > Sophie (5) - pauci/panuveitis " JIA Super Fighter " > Charlie (17 mos.) - " The Bird! " > http://www.caringbridge.org/visit/teamsophie > > > > On 1/11/07, Calhoun <bathlizzy@...> wrote: > > > > Christie, > > > > My daughter Emma Kate was diagnosed pauci at age 2, poly by age 6, and > > has been dealing with iritis for about a year and a half. Emma Kate > > originally had a negative ANA, then was tested again at 6 and tested > > positive. The doctors said it is unusual, but not unheard of. > > I just wanted to tell you that in this disease, you will learn to > > measure success in smaller increments than you ever did before. We now, > > after a year and a half, are happy if we go to the doctor and things are the > > same as last time. I think I stopped looking for " she's doing better " about > > 6 months ago, and just became happy with " she's not any worse " . Emma Kate > > was put on Methotrexate primarily because her eyes were flaring so badly. > > She has been on it a year in December. > > At one point, we were dilating her eyes twice daily and putting the eye > > drops in every hour on the hour. Her new opthalmologist (we found him in > > March) specializes in Uveitis, so that's a huge blessing and he is > > wonderful, but he has told me again and again that this is a disease that > > requires fairly constant vigilance and incremental modifications in meds. > > Controlling, not curing, is the key. Emma Kate does have some damage from > > the meds already (cataracts, but very early stage) but her doctor has often > > reminded me that cataracts can be corrected later....blindness can't. > > > > Just wanted to say that I felt much like you last year, but as a parent > > of a chronically ill child, I'm sure you know that in time you can become > > accustomed to anything. Our visits have become much less stressful since I > > let go of trying to control this, and just trusted the doctors. My only job > > is to help Emma Kate manage her disease and all the emotions that go with it > > as well as possible. My thoughts and prayers are with you guys!!! Lots of > > love! > > > > (Emma Kate, poly, age 7) > > > > --------------------------------- > > Cheap Talk? Check out Messenger's low PC-to-Phone call rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I agree with you. Don't worry about using the word " cure " , Dr. even uses it. You have to look at it like that or you are giving up before you even fight. ' & a 11 yr. jia/panuveitis Weber <teamsophie@...> wrote: I am so sorry, but I have to disagree with some of what you posted. Dr. (http://www.uveitis.org) constantly stresses that too many ophthalmologists are alright with controlling Uveitis instead of trying to cure it. He said that is one of the most dangerous things to do. This is why we chose to actually include him in Sophie's medical care instead of being alright with our doctor (the Lyons Eye Center's Uveitis specialist) constantly saying, " She isn't any worse so let's stay the course, " . He isn't alright with a child remaining in a constant flare situation - no matter how slight it might be. That is how most damage occurs over the long haul. He is extremely aggressive in treatment and whole-hearted believes that a medication free remission is possible by treating the patients with immunosuppresing drugs and " retraining " the body's immune system. I hope I haven't ruffled any feathers by posting this. You have a lot of supportive words to share. Since I am dealing with my daughter's recent decent into being legally blind, I wanted to make sure that the wrong message isn't sent to a parent who is new to this fight. I just want to make sure to save another family from the heartbreak ours has been experiencing. You are right in that it is wonderful for your daughter's eyes not to have worsened. However, I truly hope Emma's Uveitis is able to be put into some sort of remission instead of just controlled. Professional Mom to: Sophie (5) - pauci/panuveitis " JIA Super Fighter " Charlie (17 mos.) - " The Bird! " http://www.caringbridge.org/visit/teamsophie On 1/11/07, Calhoun <bathlizzy@...> wrote: > > Christie, > > My daughter Emma Kate was diagnosed pauci at age 2, poly by age 6, and has > been dealing with iritis for about a year and a half. Emma Kate originally > had a negative ANA, then was tested again at 6 and tested positive. The > doctors said it is unusual, but not unheard of. > I just wanted to tell you that in this disease, you will learn to measure > success in smaller increments than you ever did before. We now, after a year > and a half, are happy if we go to the doctor and things are the same as last > time. I think I stopped looking for " she's doing better " about 6 months ago, > and just became happy with " she's not any worse " . Emma Kate was put on > Methotrexate primarily because her eyes were flaring so badly. She has been > on it a year in December. > At one point, we were dilating her eyes twice daily and putting the eye > drops in every hour on the hour. Her new opthalmologist (we found him in > March) specializes in Uveitis, so that's a huge blessing and he is > wonderful, but he has told me again and again that this is a disease that > requires fairly constant vigilance and incremental modifications in meds. > Controlling, not curing, is the key. Emma Kate does have some damage from > the meds already (cataracts, but very early stage) but her doctor has often > reminded me that cataracts can be corrected later....blindness can't. > > Just wanted to say that I felt much like you last year, but as a parent of > a chronically ill child, I'm sure you know that in time you can become > accustomed to anything. Our visits have become much less stressful since I > let go of trying to control this, and just trusted the doctors. My only job > is to help Emma Kate manage her disease and all the emotions that go with it > as well as possible. My thoughts and prayers are with you guys!!! Lots of > love! > > (Emma Kate, poly, age 7) > > --------------------------------- > Cheap Talk? Check out Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
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