Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Hi my daughter was dianosed with jra when she was 2 and she is 5 now and will start kindergarden in the fall. She has been going to daycare since birth. I always enrolled her in special needs if she needed it. Right now she is doing alright and can walk so I seen no need for it at this time. Although it is only affected her r knee. The only problem I am having now is in her eye, she was diagnosed with glacoma 3 weeks ago and will be going in for surgery soon. I am very sorry to hear about your daughter, I have alot of stories to share if you like, I know i always found it easy when others shared their stories with me. ziegler >From: ~Deborah Sawey~ <sawey@...> >Reply- egroups >JRA-List < egroups> >Subject: Howdy From TEXAS! *New Member Introduction* >Date: Tue, 18 Apr 2000 12:15:07 -0500 > >Howdy Ya'll, > >My name is Deborah and I have a 5 year old daughter named . She >was diagnosed with JRA on March 31st and we saw the opthalmologist 4 >days later and was diagnosed as having the uveitis in both eyes and a >2.5mm cataract in her left eye. > >She just turned 5 in Jan and right now has 4 joints involved and the dr >has noted 3 more as " possible " . She currently has problems with her, >right ankle, both knees, and right hip. Both thumbs show some mild >edema, and her right elbow as well. > >I went from having a " normal " if there is such a thing *giggle* 5 year >old to having one that cannot run and wants to just sit all the time in >matter of 3 months. > >The symptoms first started as a swollen ankle, she told me she bumped >it on her bed (this was on a Friday night). I am a nurse so I just >wrapped in ace wrap, elevated it, applied cold--was not too worried as >she would bear weight on it. Called the dr on Monday and he agreed with >me. After a week still swollen now called dr back and saw him for >visit(could not see him for 4 days). Knee now swollen and ankle still >swollen too but would bear weight on them. Dr said " swelling on knee >due to her compensating for ankle and was not broke " ...Ok so home we >went. Another week went by and still swollen and now I am worried. >Called dr and made another appt (3 more days wait) demanded X-rays and >referral to Pediatriatic Ortho dr. > >Ok the radiologist was not sure but could not rule out a Salter I >fracture on the growth plate? So right ankle was put in cast----3 weeks >later took cast off and ankle was more swollen and knee was as well. > >So now more x-rays taken and see another dr---this ortho. dr says " I >think she has JRA " OH MY!!! > >So now call Texas Children's and make appt with rehum. (wait 2 more >weeks) so then we go and get final diagnosis!! What a blow. She is >positive for the antigen....and so then rush to see eye dr and then BAM >again----has the eye infection and cataract. > >Ok now I have told you our story---the rest you probably know. > >We have 2 week visit with eye dr tomorrow and see if the drops have >helped check the infection and cataract. > >I had 3 babies in 35 months (YES--you read that correctly--so I will not >be able to reply to all of your emails, but they will be read!!! > >I have a web site that is ***badly out of date*** sorry, just too busy! > >My question now.....any moms of 5 year olds out there? will >start Kindergarten in the fall---and I want to know if I should enroll >her in the " special services " or just enroll her as normal child? I >have no clue as to how well she will do...as is now she is slow to rise >and get going but once up is OK untill she gets too tired and does too >much and then gets really cranky~ > >What did you moms of 5 year old's do when they started school?? > >Thanks and {{{Beanie Hugs}}} > >Deborah, , & Family >=============================================================== >HOWDY from TEXAS-----Meet me and my family >http://www.ForeverCollectible.com > !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! >http://www.fortunecity.com/uproar/sports/301/beanies.html >-------Sign Up Here And Get $10.00 For FREE-------- >https://secure.paypal.com/refer/pal=sawey%40alpha1.net >$$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) >http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Hi Deborah, You story sounds a lot like my daughters. She was just 2 when she was diagnosed. Regarding you question of school, I would take to your district to find out what special programs they have that can work with the regular classes. Its been my experience that if you allow JRA to overshadow life it will be a lot harder for her to go back to her old life. is currently in 1st grade, in a regular class setting. I think to make their lifes as normal as possible is the key. has some difficulting in PE but the school is wonderful with modifying her activities. Email me if you would like to talk more. Reynolds > Howdy Ya'll, > > My name is Deborah and I have a 5 year old daughter named . She > was diagnosed with JRA on March 31st and we saw the opthalmologist 4 > days later and was diagnosed as having the uveitis in both eyes and a > 2.5mm cataract in her left eye. > > She just turned 5 in Jan and right now has 4 joints involved and the dr > has noted 3 more as " possible " . She currently has problems with her, > right ankle, both knees, and right hip. Both thumbs show some mild > edema, and her right elbow as well. > > I went from having a " normal " if there is such a thing *giggle* 5 year > old to having one that cannot run and wants to just sit all the time in > matter of 3 months. > > The symptoms first started as a swollen ankle, she told me she bumped > it on her bed (this was on a Friday night). I am a nurse so I just > wrapped in ace wrap, elevated it, applied cold--was not too worried as > she would bear weight on it. Called the dr on Monday and he agreed with > me. After a week still swollen now called dr back and saw him for > visit(could not see him for 4 days). Knee now swollen and ankle still > swollen too but would bear weight on them. Dr said " swelling on knee > due to her compensating for ankle and was not broke " ...Ok so home we > went. Another week went by and still swollen and now I am worried. > Called dr and made another appt (3 more days wait) demanded X-rays and > referral to Pediatriatic Ortho dr. > > Ok the radiologist was not sure but could not rule out a Salter I > fracture on the growth plate? So right ankle was put in cast----3 weeks > later took cast off and ankle was more swollen and knee was as well. > > So now more x-rays taken and see another dr---this ortho. dr says " I > think she has JRA " OH MY!!! > > So now call Texas Children's and make appt with rehum. (wait 2 more > weeks) so then we go and get final diagnosis!! What a blow. She is > positive for the antigen....and so then rush to see eye dr and then BAM > again----has the eye infection and cataract. > > Ok now I have told you our story---the rest you probably know. > > We have 2 week visit with eye dr tomorrow and see if the drops have > helped check the infection and cataract. > > I had 3 babies in 35 months (YES--you read that correctly--so I will not > be able to reply to all of your emails, but they will be read!!! > > I have a web site that is ***badly out of date*** sorry, just too busy! > > My question now.....any moms of 5 year olds out there? will > start Kindergarten in the fall---and I want to know if I should enroll > her in the " special services " or just enroll her as normal child? I > have no clue as to how well she will do...as is now she is slow to rise > and get going but once up is OK untill she gets too tired and does too > much and then gets really cranky~ > > What did you moms of 5 year old's do when they started school?? > > Thanks and {{{Beanie Hugs}}} > > Deborah, , & Family > =============================================================== > HOWDY from TEXAS-----Meet me and my family > http://www.ForeverCollectible.com > !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! > http://www.fortunecity.com/uproar/sports/301/beanies.html > -------Sign Up Here And Get $10.00 For FREE-------- > https://secure.paypal.com/refer/pal=sawey%40alpha1.net > $$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) > http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 , I saw on your posting that your daughter was diagnosed with glaucoma. Was she having inflammation in her eye prior to the diagnosis? My son has pauciarticular JRA the pain being in his knees. That has gone away since he has been on Methotrexate now for 7 months. His problem has been in his eye. He has been on the predforte drops for over a year. 2 months ago his pressure started to increase in both of his eyes from the steriod in the Predforte. we had the best checkup ever @ his eyew dr a couple weeks ago. But now it is inflammed all over again with 2+ cells in his left eye. I spoke with Angel a few weeks ago re: her daughter seems to have the same problem as . Just wondering if your dr told you anything re: the steroid drops. They have upped ' methotrexate to 25mg. and cyclosporine to 100mg. Does this ever end??? Nan Bianchine Nicks Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Welcome to the list Deborah. You will receive lots of good info. here. My daughter is older, but has been quite sick some of these last 5 months. n is in fifth grade and has systemic JRA. She missed about 3 months this year off and on. We have tried to keep her life as normal as possible. When she is in a flare, we might bring her to school later in the day when she loosens up. I tutor her at home on the really bad days. Now this was really at the beginning of the disease, and now that it is more under control she is attending regularly. She doesn't have a normal amount of energy for an 11 year old, and we put her to bed very early. We find that if she gets overtired she can really go downhill fast. I don't know if they ever get there regular amount of energy back unless they go in remission. The school has been very supportive of us and it makes allowances for n when she is in a flare. Praying for a cure. Howdy From TEXAS! *New Member Introduction* >Howdy Ya'll, > >My name is Deborah and I have a 5 year old daughter named . She >was diagnosed with JRA on March 31st and we saw the opthalmologist 4 >days later and was diagnosed as having the uveitis in both eyes and a >2.5mm cataract in her left eye. > >She just turned 5 in Jan and right now has 4 joints involved and the dr >has noted 3 more as " possible " . She currently has problems with her, >right ankle, both knees, and right hip. Both thumbs show some mild >edema, and her right elbow as well. > >I went from having a " normal " if there is such a thing *giggle* 5 year >old to having one that cannot run and wants to just sit all the time in >matter of 3 months. > >The symptoms first started as a swollen ankle, she told me she bumped >it on her bed (this was on a Friday night). I am a nurse so I just >wrapped in ace wrap, elevated it, applied cold--was not too worried as >she would bear weight on it. Called the dr on Monday and he agreed with >me. After a week still swollen now called dr back and saw him for >visit(could not see him for 4 days). Knee now swollen and ankle still >swollen too but would bear weight on them. Dr said " swelling on knee >due to her compensating for ankle and was not broke " ...Ok so home we >went. Another week went by and still swollen and now I am worried. >Called dr and made another appt (3 more days wait) demanded X-rays and >referral to Pediatriatic Ortho dr. > >Ok the radiologist was not sure but could not rule out a Salter I >fracture on the growth plate? So right ankle was put in cast----3 weeks >later took cast off and ankle was more swollen and knee was as well. > >So now more x-rays taken and see another dr---this ortho. dr says " I >think she has JRA " OH MY!!! > >So now call Texas Children's and make appt with rehum. (wait 2 more >weeks) so then we go and get final diagnosis!! What a blow. She is >positive for the antigen....and so then rush to see eye dr and then BAM >again----has the eye infection and cataract. > >Ok now I have told you our story---the rest you probably know. > >We have 2 week visit with eye dr tomorrow and see if the drops have >helped check the infection and cataract. > >I had 3 babies in 35 months (YES--you read that correctly--so I will not >be able to reply to all of your emails, but they will be read!!! > >I have a web site that is ***badly out of date*** sorry, just too busy! > >My question now.....any moms of 5 year olds out there? will >start Kindergarten in the fall---and I want to know if I should enroll >her in the " special services " or just enroll her as normal child? I >have no clue as to how well she will do...as is now she is slow to rise >and get going but once up is OK untill she gets too tired and does too >much and then gets really cranky~ > >What did you moms of 5 year old's do when they started school?? > >Thanks and {{{Beanie Hugs}}} > >Deborah, , & Family >=============================================================== >HOWDY from TEXAS-----Meet me and my family >http://www.ForeverCollectible.com > !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! >http://www.fortunecity.com/uproar/sports/301/beanies.html >-------Sign Up Here And Get $10.00 For FREE-------- >https://secure.paypal.com/refer/pal=sawey%40alpha1.net >$$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) >http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 > >------------------------------------------------------------------------ >Get your bargains at AndysGarage.com! >1/2582/1/_/524922/_/956078219/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2000 Report Share Posted April 18, 2000 Hi Deborah, What the school does for my daughter is meet her needs accordingly to what is needed at that time. Whatever you do please don't handicap her you'll regret it later. she has poly. and they wanted to put in special ed, but i said no because she didn't need sped. so they have a nurse to help when needed. when her hands swells another student writes for her and the school bought her those fat pencils the dr. said she had to use. as far as p. e goes it depends on how my daughter feels that day. please don't let the school handicap her either. they can help her while in her regular classes to don't let them tell you differerntly ok. my daughter is 9 1/2 sweetpea200001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Hi, My name is Deborah---Daughter is , and no indication of anything wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and she doesn't have glaucoma, was diagnosed with a cataract in left eye and the infection in both eyes. I have gotten some emails from people telling me that I should not put my daughter in *special education* you must have misunderstood my question. Not considering special education....here in Texas they call it special services. She will be in regular class room with *normal* children but when and if she has problems can get special help-----like they have a physical therapist in the school district and can have that in place of PE if we sign her up, and on days when cannot write will be excused from doing so---but only if I sign her up---if I dont sign her up then is expected to do as all *normal* children are to do---and if misses too much school will be held back if not signed up for " special services " . And if not signed up is expected to preform in PE as well...if they told her and 3 other little girls to go jump rope she could not do it--and that would count against her. She cannot even run and has hard time walking up steps, much less play hop scotch or jump rope or do jumping jacks. I was told by dr NO impact on joints of any kind----anyone else told this? She just diagnosed 19 days ago and has lots of swelling in many joints and hip???? She will not be in a special class room or have special teacher---just be given additional time to do things that are *difficult* for her when she is having bad day~ They can and will provide a buddy for her on days when she cannot carry her own lunch tray, or open her locker, and will let her make up home work during PE if she was just too tired the night before to complete the nights assigned homework~ Is anyone signed up for a program similar to this? Not special education---would never consider that as she is very bright only has physical limitations---unless the cataract gets much bigger or on Thurs we find that has one in other eye too...and will take that as it comes. Is anyone on this list in TEXAS??? Thanks, Deborah njbsmom@... wrote: > > , > > I saw on your posting that your daughter was diagnosed with glaucoma. Was she > having inflammation in her eye prior to the diagnosis? My son has > pauciarticular JRA the pain being in his knees. That has gone away since he > has been on Methotrexate now for 7 months. His problem has been in his eye. > He has been on the predforte drops for over a year. 2 months ago his pressure > started to increase in both of his eyes from the steriod in the Predforte. we > had the best checkup ever @ his eyew dr a couple weeks ago. But now it is > inflammed all over again with 2+ cells in his left eye. I spoke with Angel a > few weeks ago re: her daughter seems to have the same problem as . > Just wondering if your dr told you anything re: the steroid drops. They have > upped ' methotrexate to 25mg. and cyclosporine to 100mg. Does this > ever end??? > > Nan Bianchine > Nicks Mom > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > 1/3011/1/_/524922/_/956096413/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html -- =============================================================== HOWDY from TEXAS-----Meet me and my family http://www.ForeverCollectible.com !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! http://www.fortunecity.com/uproar/sports/301/beanies.html -------Sign Up Here And Get $10.00 For FREE-------- https://secure.paypal.com/refer/pal=sawey%40alpha1.net $$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 , Your reply was excellent. I know I've never intorduced myself to the group here but when I read your reply, I knew I needed to tell you how true it is. I am speaking as an adult who has been through JRA. Keep life as normal as possible. PE was my downfall at times. In middle school, the PE teacher had me do laundry for my grade. Waynette --- rous@... wrote: > Hi Deborah, > > You story sounds a lot like my daughters. She was > just 2 when she > was diagnosed. Regarding you question of school, I > would take to > your district to find out what special programs they > have that can > work with the regular classes. Its been my > experience that if you > allow JRA to overshadow life it will be a lot > harder for her > to go back to her old life. is currently in > 1st grade, in a > regular class setting. I think to make their lifes > as normal as > possible is the key. has some difficulting in > PE but the school > is wonderful with modifying her activities. > > Email me if you would like to talk more. > Reynolds > > > > Howdy Ya'll, > > > > My name is Deborah and I have a 5 year old > daughter named . > She > > was diagnosed with JRA on March 31st and we saw > the opthalmologist 4 > > days later and was diagnosed as having the uveitis > in both eyes and > a > > 2.5mm cataract in her left eye. > > > > She just turned 5 in Jan and right now has 4 > joints involved and > the dr > > has noted 3 more as " possible " . She currently has > problems with > her, > > right ankle, both knees, and right hip. Both > thumbs show some mild > > edema, and her right elbow as well. > > > > I went from having a " normal " if there is such a > thing *giggle* 5 > year > > old to having one that cannot run and wants to > just sit all the > time in > > matter of 3 months. > > > > The symptoms first started as a swollen ankle, > she told me she > bumped > > it on her bed (this was on a Friday night). I am > a nurse so I just > > wrapped in ace wrap, elevated it, applied > cold--was not too worried > as > > she would bear weight on it. Called the dr on > Monday and he agreed > with > > me. After a week still swollen now called dr back > and saw him for > > visit(could not see him for 4 days). Knee now > swollen and ankle > still > > swollen too but would bear weight on them. Dr > said " swelling on > knee > > due to her compensating for ankle and was not > broke " ...Ok so home we > > went. Another week went by and still swollen and > now I am worried. > > Called dr and made another appt (3 more days wait) > demanded X-rays > and > > referral to Pediatriatic Ortho dr. > > > > Ok the radiologist was not sure but could not rule > out a Salter I > > fracture on the growth plate? So right ankle was > put in cast----3 > weeks > > later took cast off and ankle was more swollen and > knee was as well. > > > > So now more x-rays taken and see another dr---this > ortho. dr says " I > > think she has JRA " OH MY!!! > > > > So now call Texas Children's and make appt with > rehum. (wait 2 more > > weeks) so then we go and get final diagnosis!! > What a blow. She is > > positive for the antigen....and so then rush to > see eye dr and then > BAM > > again----has the eye infection and cataract. > > > > Ok now I have told you our story---the rest you > probably know. > > > > We have 2 week visit with eye dr tomorrow and see > if the drops have > > helped check the infection and cataract. > > > > I had 3 babies in 35 months (YES--you read that > correctly--so I > will not > > be able to reply to all of your emails, but they > will be read!!! > > > > I have a web site that is ***badly out of date*** > sorry, just too > busy! > > > > My question now.....any moms of 5 year olds out > there? will > > start Kindergarten in the fall---and I want to > know if I should > enroll > > her in the " special services " or just enroll her > as normal child? > I > > have no clue as to how well she will do...as is > now she is slow to > rise > > and get going but once up is OK untill she gets > too tired and does > too > > much and then gets really cranky~ > > > > What did you moms of 5 year old's do when they > started school?? > > > > Thanks and {{{Beanie Hugs}}} > > > > Deborah, , & Family > > > =============================================================== > > HOWDY from TEXAS-----Meet me and my family > > http://www.ForeverCollectible.com > > !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! > > > http://www.fortunecity.com/uproar/sports/301/beanies.html > > -------Sign Up Here And Get $10.00 For > FREE-------- > > > https://secure.paypal.com/refer/pal=sawey%40alpha1.net > > $$$$ Make Money from Your Web Site $$$$$ (Sign Up > It Is Easy) > > > http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 > > ===== I'm not under the alkafluence of inkahol that some thinkle peep I am. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 My daughter is not on the meth, never heard about it. Right now she is on celebrex for the joints and her left eye is is on cosopt 3 times a day and timolol 2 times a day, at this point there is no active arthritis in her eye, just the pressure is up to 38, no nerve damage yet, (thank god) and she was on the predforte but they took her off because that also can damage the nerve. On my way to work will check later. >From: ~Deborah Sawey~ <sawey@...> >Reply- egroups > egroups >Subject: Re: Howdy From TEXAS! *New Member Introduction* >Date: Tue, 18 Apr 2000 21:37:20 -0500 > >Hi, > >My name is Deborah---Daughter is , and no indication of anything >wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and >she doesn't have glaucoma, was diagnosed with a cataract in left eye and >the infection in both eyes. > >I have gotten some emails from people telling me that I should not put >my daughter in *special education* you must have misunderstood my >question. Not considering special education....here in Texas they call >it special services. > >She will be in regular class room with *normal* children but when and if >she has problems can get special help-----like they have a physical >therapist in the school district and can have that in place of PE if we >sign her up, and on days when cannot write will be excused from doing >so---but only if I sign her up---if I dont sign her up then is expected >to do as all *normal* children are to do---and if misses too much school >will be held back if not signed up for " special services " . And if not >signed up is expected to preform in PE as well...if they told her and 3 >other little girls to go jump rope she could not do it--and that would >count against her. She cannot even run and has hard time walking up >steps, much less play hop scotch or jump rope or do jumping jacks. > >I was told by dr NO impact on joints of any kind----anyone else told >this? She just diagnosed 19 days ago and has lots of swelling in many >joints and hip???? > >She will not be in a special class room or have special teacher---just >be given additional time to do things that are *difficult* for her when >she is having bad day~ They can and will provide a buddy for her on >days when she cannot carry her own lunch tray, or open her locker, and >will let her make up home work during PE if she was just too tired the >night before to complete the nights assigned homework~ > >Is anyone signed up for a program similar to this? > >Not special education---would never consider that as she is very bright >only has physical limitations---unless the cataract gets much bigger or >on Thurs we find that has one in other eye too...and will take that as >it comes. > >Is anyone on this list in TEXAS??? > >Thanks, > >Deborah > > > >njbsmom@... wrote: > > > > , > > > > I saw on your posting that your daughter was diagnosed with glaucoma. >Was she > > having inflammation in her eye prior to the diagnosis? My son >has > > pauciarticular JRA the pain being in his knees. That has gone away since >he > > has been on Methotrexate now for 7 months. His problem has been in his >eye. > > He has been on the predforte drops for over a year. 2 months ago his >pressure > > started to increase in both of his eyes from the steriod in the >Predforte. we > > had the best checkup ever @ his eyew dr a couple weeks ago. But now it >is > > inflammed all over again with 2+ cells in his left eye. I spoke with >Angel a > > few weeks ago re: her daughter seems to have the same problem as >. > > Just wondering if your dr told you anything re: the steroid drops. They >have > > upped ' methotrexate to 25mg. and cyclosporine to 100mg. Does >this > > ever end??? > > > > Nan Bianchine > > Nicks Mom > > > > ------------------------------------------------------------------------ > > Avoid the lines and visit avis.com for quick and easy online > > reservations. Enjoy a compact car nationwide for only $29 a day! > > Click here for more details. > > 1/3011/1/_/524922/_/956096413/ > > ------------------------------------------------------------------------ > > > > For links to websites with JRA info visit: > > http://www.geocities.com/Heartland/Village/8414/Links.html > >-- >=============================================================== >HOWDY from TEXAS-----Meet me and my family >http://www.ForeverCollectible.com > !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! >http://www.fortunecity.com/uproar/sports/301/beanies.html >-------Sign Up Here And Get $10.00 For FREE-------- >https://secure.paypal.com/refer/pal=sawey%40alpha1.net >$$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) >http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Hi Deborah We were in Texas til June'98, so my daughter only attended kindergarten there. My younger kids--those not in high school--attended Catholic schools, so I did not have to deal with the special services plan. As far as being absent goes---you should not have to enroll your daughter in special services in case of too many days out. My then 9th grader has a severe bout with mono in Texas and missed three weeks of school. The only reason she didn't miss more was the arrival of Christmas break. Due to " excessive " absences, the school district said we would have to appear before a committe and ask that my daughter be promoted. I called the principal and told him I WOULD NOT waste my time like that. They had several notes from the doctor, keeping them fully informed. And did all her work and passed all classes and tests. Bottom line---you can fight this! As for PE----I did speak to the local public school, in case we decided to enroll the kids there (we are military,so move often). I got the same basic line that you got--services or regular PE. They said the doctor needed to tell them what could and could not do. I tried to explain that JRA does not work that way---some days a child might be able to run and run, and the next day that same child might need help getting around. That's one of the reasons I didn't put the kids in public schools. What I have since learned is that you can request a 504 plan be drawn up for your child. This is FEDERAL LAW, not a state thing. In 's case, her 504 covers things like PE (we had a problematic PE teacher last year), stating that she is to be permitted to set her own limits. is not a complainer, so if she tells a teacher that something is too painful, she is telling the truth. So I wanted to make sure she is in regular PE, but not penalized if she sits out sometimes. The other things in her 504 are pretty basic--allowed to get up and move around if she is getting stiff (more for substitute teacher's--her teacher is wonderful!!), extra time with written assignments when her hands flare. Basic stuff. What I did learn is that here in Virginia, where we have SOL testing--similar to TASS--any needed accomodations for testing MUST be in a 504 or an IEP BEFORE testing begins. So if your child has hand involvement, you may need to look into this. You could say something like " An aide is needed to color in the circles on standardized testing " or that your daughter is to get extra time. While she might be capable of taking the test without accomodations when the time comes, I have learned that you need to " cover your bases " . Hope this all makes sense, and I'm sorry it got so long. Liz ~Deborah Sawey~ wrote: > > Hi, > > My name is Deborah---Daughter is , and no indication of anything > wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and > she doesn't have glaucoma, was diagnosed with a cataract in left eye and > the infection in both eyes. > > I have gotten some emails from people telling me that I should not put > my daughter in *special education* you must have misunderstood my > question. Not considering special education....here in Texas they call > it special services. > > She will be in regular class room with *normal* children but when and if > she has problems can get special help-----like they have a physical > therapist in the school district and can have that in place of PE if we > sign her up, and on days when cannot write will be excused from doing > so---but only if I sign her up---if I dont sign her up then is expected > to do as all *normal* children are to do---and if misses too much school > will be held back if not signed up for " special services " . And if not > signed up is expected to preform in PE as well...if they told her and 3 > other little girls to go jump rope she could not do it--and that would > count against her. She cannot even run and has hard time walking up > steps, much less play hop scotch or jump rope or do jumping jacks. > > I was told by dr NO impact on joints of any kind----anyone else told > this? She just diagnosed 19 days ago and has lots of swelling in many > joints and hip???? > > She will not be in a special class room or have special teacher---just > be given additional time to do things that are *difficult* for her when > she is having bad day~ They can and will provide a buddy for her on > days when she cannot carry her own lunch tray, or open her locker, and > will let her make up home work during PE if she was just too tired the > night before to complete the nights assigned homework~ > > Is anyone signed up for a program similar to this? > > Not special education---would never consider that as she is very bright > only has physical limitations---unless the cataract gets much bigger or > on Thurs we find that has one in other eye too...and will take that as > it comes. > > Is anyone on this list in TEXAS??? > > Thanks, > > Deborah > > njbsmom@... wrote: > > > > , > > > > I saw on your posting that your daughter was diagnosed with glaucoma. Was she > > having inflammation in her eye prior to the diagnosis? My son has > > pauciarticular JRA the pain being in his knees. That has gone away since he > > has been on Methotrexate now for 7 months. His problem has been in his eye. > > He has been on the predforte drops for over a year. 2 months ago his pressure > > started to increase in both of his eyes from the steriod in the Predforte. we > > had the best checkup ever @ his eyew dr a couple weeks ago. But now it is > > inflammed all over again with 2+ cells in his left eye. I spoke with Angel a > > few weeks ago re: her daughter seems to have the same problem as . > > Just wondering if your dr told you anything re: the steroid drops. They have > > upped ' methotrexate to 25mg. and cyclosporine to 100mg. Does this > > ever end??? > > > > Nan Bianchine > > Nicks Mom > > > > ------------------------------------------------------------------------ > > Avoid the lines and visit avis.com for quick and easy online > > reservations. Enjoy a compact car nationwide for only $29 a day! > > Click here for more details. > > 1/3011/1/_/524922/_/956096413/ > > ------------------------------------------------------------------------ > > > > For links to websites with JRA info visit: > > http://www.geocities.com/Heartland/Village/8414/Links.html > > -- > =============================================================== > HOWDY from TEXAS-----Meet me and my family > http://www.ForeverCollectible.com > !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! > http://www.fortunecity.com/uproar/sports/301/beanies.html > -------Sign Up Here And Get $10.00 For FREE-------- > https://secure.paypal.com/refer/pal=sawey%40alpha1.net > $$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) > http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > 1/3011/1/_/524922/_/956111955/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 hi deborah. my name is cheri and my son tristan was diagnosed with poly JRA when he was 16 months old. he turns 3 this saturday and has been going to texas childrens hospital. he sees dr perez and occasionally dr warren. i love it there, they have taken excellent care of my son and my husband and i as well, as far as making us feel comfortable and answering any questions. i would DEFINITELY sign your daughter up for the special services when you enroll her in school. atleast it will be there if she needs it, and if she doesnt, fantastic. i still have a few years before tristan starts school and you can bet if he is still having problems i will take all the help he can get, without making him feel *different*. good luck, i know how it feels to be at the beginning but it gets much easier! cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Hi, Welcome, Deborah! We're in Hawaii. That's pretty far from Texas. Well, it's pretty far from everywhere! My son Josh has had systemic JRA for almost 5 years. He has never had eye involvement from the JRA but he sees the eye doctor at least twice a year because he takes plaquinel and because we have to monitor his eyes to see if there's been any progression or change in the early cataracts that were first noticed about two years ago ~ which are probably a result of his long-term steroid use. My son has had JRA since the last month of kindergarden. We went a few years with just speaking to the teachers and school staff about his illness and what might be expected as far as more frequent absences and possible changes in behavior or special adaptations. I'd bring in any doctors notes, as far as any short-term limitations for things like PE. When the arthritis was very active in his ankles, he was having some mobility issues. He couldn't be expected to participate in activities like running and jumping during those times, as he was having difficulty doing things like just walking. Then we went ahead and did an IEP and signed him up for special ed. His JRA led to inclusion in the 'other health' category. He's always been in a regular classroom. And he excels in academic work. It's just in case, like others have said, he needs any adaptations in the routine or workload because of the illness. He tends to miss more school days than a child without a chronic illness, or be brought to school late if he is having a difficult morning and starts to feel better in a few hours. It just made it easier, once it was all in writing, to do things like have an extra set of text books at home, be sure he can go to the health room if he's having a hard time and needs to rest for a while, give him a little extra time to get from his homeroom class to his math class, on the other side of the large campus. Actually, the first time we ever got any 'real services' because of his illness was this past January, when he started getting a home tutor twice a week to help him with any areas that he may have been feeling stressed about possibly not doing his best, because he had missed lessons. He's a perfectionistic. I pick up his homework and classwork each day and as soon as he's well enough he gets to work. In some situations it was harder for him because he wasn't there when a new concept was introduced. I'd help him learn the material but now his tutor does that instead. His IEP says he has to complete at least 80% of the coursework with a C or better average. He normally completes 100% of the work and usually gets a B or better(made the honor roll again this last quarter). The only instance I can think of is that with some math homework they'd be assigned, say, 100 problems to write out and answer. If his wrists or fingers were affected badly, he'd have me write out the answers he got. Now, if need be, once he understands the concepts and how to do the work, he would only have to 80% of the problems and still be okay. With Josh, different joints have been affected to varying degrees, at different times. He's also had arthritic involvement in other parts of his body. Pericarditis, pleurisy, chosteochondritis, tendonitis, organ inflammation. His JRA was pretty severe and persistent, despite strong meds. He had very high fevers and rash regularly ~almost everyday~ for over a year and this still happens, even now, whenever he has a flare. We never really know where it will be bothering him next. Right now he seems to be doing really well (despite his last labs coming back not-so-good) but we never know if or when another crisis will present. A lot of times things will be going smoothely and then all of a sudden, the status changes. He sees the rheumatologist once a month. Usually gets blood labs done once a month (in the beginning, it was every two weeks). Still, he's a great kid with a very normal childhood and physically, he's come a long way. It seems like the arthritis is being controlled very well right now. I know ... I've said that before! Hopefully no setbacks, any time soon. In a lot of ways, this gets easier to deal with over time. Except that you want to believe that the worst is over when they're doing so good and a flare up can disappoint you and bring you back to the reality that this can be a long-term chronic illness that tends to subside and recur with a will of it's own. It has taught us a lot about not taking things for granted though and I truly do appreciate times like right now, when most things are going just fine for my son and the arthritis isn't being a big pain. Little complaints have become a part of life. It's just the major flares that cause a problem and I hope we can steer clear of them for a very long time. Even as we continue tapering down on the amount of steroids he needs to take! Sorry this turned out to be such a long post! Take care, Georgina ~Deborah Sawey~ wrote: > > Hi, > > My name is Deborah---Daughter is , and no indication of anything > wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and > she doesn't have glaucoma, was diagnosed with a cataract in left eye and > the infection in both eyes. > > I have gotten some emails from people telling me that I should not put > my daughter in *special education* you must have misunderstood my > question. Not considering special education....here in Texas they call > it special services. > > She will be in regular class room with *normal* children but when and if > she has problems can get special help-----like they have a physical > therapist in the school district and can have that in place of PE if we > sign her up, and on days when cannot write will be excused from doing > so---but only if I sign her up---if I dont sign her up then is expected > to do as all *normal* children are to do---and if misses too much school > will be held back if not signed up for " special services " . And if not > signed up is expected to preform in PE as well...if they told her and 3 > other little girls to go jump rope she could not do it--and that would > count against her. She cannot even run and has hard time walking up > steps, much less play hop scotch or jump rope or do jumping jacks. > > I was told by dr NO impact on joints of any kind----anyone else told > this? She just diagnosed 19 days ago and has lots of swelling in many > joints and hip???? > > She will not be in a special class room or have special teacher---just > be given additional time to do things that are *difficult* for her when > she is having bad day~ They can and will provide a buddy for her on > days when she cannot carry her own lunch tray, or open her locker, and > will let her make up home work during PE if she was just too tired the > night before to complete the nights assigned homework~ > > Is anyone signed up for a program similar to this? > > Not special education---would never consider that as she is very bright > only has physical limitations---unless the cataract gets much bigger or > on Thurs we find that has one in other eye too...and will take that as > it comes. > > Is anyone on this list in TEXAS??? > > Thanks, > > Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 We have a similar situation with my 11 1/2 year old daughter. We have a problematic gym teacher this year. This is almost her 4th year of diagnosis. My daughter is very midly affectd and has an extremly highpain tolerance which makes the gym teacher doubt her even more. Her band instructor gets it more than the gym teacher. My daughter is able to participate in track( the band instuctor is her coach); He is her biggest cheering section at the meets. He gets more excited than I do. We have the 504 plan in place and the only teacher as I said not to get it is the gym teacher, the one person who should get it. Thanks for listening, Toni Masura Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 Hi Deborah, The beginning is usually the very hardest part. Lots of changes. Seeing your daughter not feeling well. Trying to figure out what's going on and what you can do to help. Coming to grips with the whirlwind of diagnosis, all the doctor appts, tests and medicines. Things will eventually settle down again though. And it will get easier. I know it's scary but our children have an incredible amount of inner strength. With our love, guidance and support and the help and expertise of caring health professionals, they persevere and make the best of things. The treatments available these days are often very helpful in controlling the arthritis symptoms. It usually does take some time to figure out the right course of action but eventually should start having some improvement. Then she'll feel like being more active again, once the inflammation is being managed and her joints aren't so sore. Is taking an anti-inflammatory? Have they mentioned the possibility of physical therapy? Do you have access to a heated pool? These things may help. Do let us know how that next eye doctor appt goes. I hope the eye drops help clear up the current infection. And that the progression of the cataract can be controlled. My son has steroid-induced cataract, but his vision hasn't yet been affected and they've remained stable at the last two eye appts, haven't been getting any worse. Eye doctor assures us that if and when the need ever arrises, the surgery isn't too complicated and it usually has good results. He seems optimistic about it so I try not to worry too much. Just take it one day at a time. I hope you'll find some useful information here on the . I understand how busy you are, with three little ones. So if it ever gets to be too much email, there's the option of switching your subscription to the digest mode, where you'll get a condensed email that includes all the posts of the day. And if you ever have any questions, we've got quite a few JRA experts here with a wealth of first-hand knowledge and experience Take care, Georgina ~Deborah Sawey~ wrote: > > Howdy Ya'll, > > My name is Deborah and I have a 5 year old daughter named . She > was diagnosed with JRA on March 31st and we saw the opthalmologist 4 > days later and was diagnosed as having the uveitis in both eyes and a > 2.5mm cataract in her left eye. > > She just turned 5 in Jan and right now has 4 joints involved and the dr > has noted 3 more as " possible " . She currently has problems with her, > right ankle, both knees, and right hip. Both thumbs show some mild > edema, and her right elbow as well. > > I went from having a " normal " if there is such a thing *giggle* 5 year > old to having one that cannot run and wants to just sit all the time in > matter of 3 months. > > The symptoms first started as a swollen ankle, she told me she bumped > it on her bed (this was on a Friday night). I am a nurse so I just > wrapped in ace wrap, elevated it, applied cold--was not too worried as > she would bear weight on it. Called the dr on Monday and he agreed with > me. After a week still swollen now called dr back and saw him for > visit(could not see him for 4 days). Knee now swollen and ankle still > swollen too but would bear weight on them. Dr said " swelling on knee > due to her compensating for ankle and was not broke " ...Ok so home we > went. Another week went by and still swollen and now I am worried. > Called dr and made another appt (3 more days wait) demanded X-rays and > referral to Pediatriatic Ortho dr. > > Ok the radiologist was not sure but could not rule out a Salter I > fracture on the growth plate? So right ankle was put in cast----3 weeks > later took cast off and ankle was more swollen and knee was as well. > > So now more x-rays taken and see another dr---this ortho. dr says " I > think she has JRA " OH MY!!! > > So now call Texas Children's and make appt with rehum. (wait 2 more > weeks) so then we go and get final diagnosis!! What a blow. She is > positive for the antigen....and so then rush to see eye dr and then BAM > again----has the eye infection and cataract. > > Ok now I have told you our story---the rest you probably know. > > We have 2 week visit with eye dr tomorrow and see if the drops have > helped check the infection and cataract. > > I had 3 babies in 35 months (YES--you read that correctly--so I will not > be able to reply to all of your emails, but they will be read!!! > > I have a web site that is ***badly out of date*** sorry, just too busy! > > My question now.....any moms of 5 year olds out there? will > start Kindergarten in the fall---and I want to know if I should enroll > her in the " special services " or just enroll her as normal child? I > have no clue as to how well she will do...as is now she is slow to rise > and get going but once up is OK untill she gets too tired and does too > much and then gets really cranky~ > > What did you moms of 5 year old's do when they started school?? > > Thanks and {{{Beanie Hugs}}} > > Deborah, , & Family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 Hey Ya'll, With 3 little ones (one with JRA) I have not been able to keep up with the posts so have made it to " digest " Anyone wanting to talk to me personaly please feel free to email me privately at sawey@... Well I am so happy that we got into the 504 (that is what they call it here in TEXAS....so wont' have that problem with PE at school. HAPPY EASTER!!! Deb~ rontonitoo@... wrote: > > We have a similar situation with my 11 1/2 year old daughter. We have a > problematic gym teacher this year. This is almost her 4th year of diagnosis. > My daughter is very midly affectd and has an extremly highpain tolerance > which makes the gym teacher doubt her even more. Her band instructor gets it > more than the gym teacher. My daughter is able to participate in track( the > band instuctor is her coach); He is her biggest cheering section at the > meets. He gets more excited than I do. > We have the 504 plan in place and the only teacher as I said not to get it > is the gym teacher, the one person who should get it. Thanks for listening, > > > Toni Masura > > ------------------------------------------------------------------------ > Get your bargains at AndysGarage.com! > 1/2582/1/_/524922/_/956259863/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html -- =============================================================== HOWDY from TEXAS-----Meet me and my family http://www.ForeverCollectible.com !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! http://www.fortunecity.com/uproar/sports/301/beanies.html -------Sign Up Here And Get $10.00 For FREE-------- https://secure.paypal.com/refer/pal=sawey%40alpha1.net $$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 Hey Cheri, I think they are GREAT at TEXAS Childrens maybe we will see ya there some time. I could not keep up with the posts so if you want to email me privately that is great!! sawey@... I hope to keep things as normal as possible but right now with all the inflammation is very hard. Not responding too well to the Naprosyn so hope by the time school starts something will be helping. Must go for now and thanks to ya all for the advice, Deborah cheri97706@... wrote: > > hi deborah. my name is cheri and my son tristan was diagnosed with poly JRA > when he was 16 months old. he turns 3 this saturday and has been going to > texas childrens hospital. he sees dr perez and occasionally dr warren. i love > it there, they have taken excellent care of my son and my husband and i as > well, as far as making us feel comfortable and answering any questions. i > would DEFINITELY sign your daughter up for the special services when you > enroll her in school. atleast it will be there if she needs it, and if she > doesnt, fantastic. i still have a few years before tristan starts school and > you can bet if he is still having problems i will take all the help he can > get, without making him feel *different*. good luck, i know how it feels to > be at the beginning but it gets much easier! cheri > > ------------------------------------------------------------------------ > Whatever you want, chances are you'll find it at one of the hundreds > of sites in The PointClick Network--like Disney.com, eCost.com, > FogDog.com and many more. You get paid as you shop and an additional > 10% off any purchase, anytime. > 1/2994/1/_/524922/_/956163789/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html -- =============================================================== HOWDY from TEXAS-----Meet me and my family http://www.ForeverCollectible.com !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! http://www.fortunecity.com/uproar/sports/301/beanies.html -------Sign Up Here And Get $10.00 For FREE-------- https://secure.paypal.com/refer/pal=sawey%40alpha1.net $$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 Hey there, Like I posted earlier---having hard time with all the mail so if you want to chat privately just email me. I did go see your web site---think it was yours??? Very nice!!! Wish I could go to Hawaii!! yes I want her to be normal--but right now everyone can tell isnot. Has very altered gait and low activity tolerance. Just hope not on the steriods too long myself. Have lots to do going out of town for Easter. Ya'll have a good one and ALOHA!! PS: I sell alot of beanie babies to someone in Hawaii---cannot remember name right now will have to look it up and see if they are close to you!! PEACE to you all, Deb~ Georgina wrote: > > Hi, > > Welcome, Deborah! We're in Hawaii. That's pretty far from Texas. Well, > it's pretty far from everywhere! My son Josh has had systemic JRA for > almost 5 years. He has never had eye involvement from the JRA but he > sees the eye doctor at least twice a year because he takes plaquinel and > because we have to monitor his eyes to see if there's been any > progression or change in the early cataracts that were first noticed > about two years ago ~ which are probably a result of his long-term > steroid use. > > My son has had JRA since the last month of kindergarden. We went a few > years with just speaking to the teachers and school staff about his > illness and what might be expected as far as more frequent absences and > possible changes in behavior or special adaptations. I'd bring in any > doctors notes, as far as any short-term limitations for things like PE. > When the arthritis was very active in his ankles, he was having some > mobility issues. He couldn't be expected to participate in activities > like running and jumping during those times, as he was having difficulty > doing things like just walking. > Then we went ahead and did an IEP and signed him up for special ed. His > JRA led to inclusion in the 'other health' category. He's always been in > a regular classroom. And he excels in academic work. It's just in case, > like others have said, he needs any adaptations in the routine or > workload because of the illness. He tends to miss more school days than > a child without a chronic illness, or be brought to school late if he is > having a difficult morning and starts to feel better in a few hours. It > just made it easier, once it was all in writing, to do things like have > an extra set of text books at home, be sure he can go to the health room > if he's having a hard time and needs to rest for a while, give him a > little extra time to get from his homeroom class to his math class, on > the other side of the large campus. > > Actually, the first time we ever got any 'real services' because of his > illness was this past January, when he started getting a home tutor > twice a week to help him with any areas that he may have been feeling > stressed about possibly not doing his best, because he had missed > lessons. He's a perfectionistic. I pick up his homework and classwork > each day and as soon as he's well enough he gets to work. In some > situations it was harder for him because he wasn't there when a new > concept was introduced. I'd help him learn the material but now his > tutor does that instead. His IEP says he has to complete at least 80% of > the coursework with a C or better average. He normally completes 100% of > the work and usually gets a B or better(made the honor roll again this > last quarter). The only instance I can think of is that with some math > homework they'd be assigned, say, 100 problems to write out and answer. > If his wrists or fingers were affected badly, he'd have me write out the > answers he got. Now, if need be, once he understands the concepts and > how to do the work, he would only have to 80% of the problems and still > be okay. > > With Josh, different joints have been affected to varying degrees, at > different times. He's also had arthritic involvement in other parts of > his body. Pericarditis, pleurisy, chosteochondritis, tendonitis, organ > inflammation. His JRA was pretty severe and persistent, despite strong > meds. He had very high fevers and rash regularly ~almost everyday~ for > over a year and this still happens, even now, whenever he has a flare. > We never really know where it will be bothering him next. Right now he > seems to be doing really well (despite his last labs coming back > not-so-good) but we never know if or when another crisis will present. A > lot of times things will be going smoothely and then all of a sudden, > the status changes. He sees the rheumatologist once a month. Usually > gets blood labs done once a month (in the beginning, it was every two > weeks). > > Still, he's a great kid with a very normal childhood and physically, > he's come a long way. It seems like the arthritis is being controlled > very well right now. I know ... I've said that before! Hopefully no > setbacks, any time soon. In a lot of ways, this gets easier to deal with > over time. Except that you want to believe that the worst is over when > they're doing so good and a flare up can disappoint you and bring you > back to the reality that this can be a long-term chronic illness that > tends to subside and recur with a will of it's own. It has taught us a > lot about not taking things for granted though and I truly do appreciate > times like right now, when most things are going just fine for my son > and the arthritis isn't being a big pain. Little complaints have become > a part of life. It's just the major flares that cause a problem and I > hope we can steer clear of them for a very long time. Even as we > continue tapering down on the amount of steroids he needs to take! > > Sorry this turned out to be such a long post! > Take care, > Georgina > > ~Deborah Sawey~ wrote: > > > > Hi, > > > > My name is Deborah---Daughter is , and no indication of anything > > wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and > > she doesn't have glaucoma, was diagnosed with a cataract in left eye and > > the infection in both eyes. > > > > I have gotten some emails from people telling me that I should not put > > my daughter in *special education* you must have misunderstood my > > question. Not considering special education....here in Texas they call > > it special services. > > > > She will be in regular class room with *normal* children but when and if > > she has problems can get special help-----like they have a physical > > therapist in the school district and can have that in place of PE if we > > sign her up, and on days when cannot write will be excused from doing > > so---but only if I sign her up---if I dont sign her up then is expected > > to do as all *normal* children are to do---and if misses too much school > > will be held back if not signed up for " special services " . And if not > > signed up is expected to preform in PE as well...if they told her and 3 > > other little girls to go jump rope she could not do it--and that would > > count against her. She cannot even run and has hard time walking up > > steps, much less play hop scotch or jump rope or do jumping jacks. > > > > I was told by dr NO impact on joints of any kind----anyone else told > > this? She just diagnosed 19 days ago and has lots of swelling in many > > joints and hip???? > > > > She will not be in a special class room or have special teacher---just > > be given additional time to do things that are *difficult* for her when > > she is having bad day~ They can and will provide a buddy for her on > > days when she cannot carry her own lunch tray, or open her locker, and > > will let her make up home work during PE if she was just too tired the > > night before to complete the nights assigned homework~ > > > > Is anyone signed up for a program similar to this? > > > > Not special education---would never consider that as she is very bright > > only has physical limitations---unless the cataract gets much bigger or > > on Thurs we find that has one in other eye too...and will take that as > > it comes. > > > > Is anyone on this list in TEXAS??? > > > > Thanks, > > > > Deborah > > ------------------------------------------------------------------------ > Get your bargains at AndysGarage.com! > 1/2582/1/_/524922/_/956180824/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html -- =============================================================== HOWDY from TEXAS-----Meet me and my family http://www.ForeverCollectible.com !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+! http://www.fortunecity.com/uproar/sports/301/beanies.html -------Sign Up Here And Get $10.00 For FREE-------- https://secure.paypal.com/refer/pal=sawey%40alpha1.net $$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy) http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 im sure they will try ibuprofen if the naprosyn isnt helping. then they may add prednisone and methotrexate. good luck and ill keep in touch! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 cheri whats the special services for kids with JRA this is so new to me at this point i know about the IEPs for learning LD but not for physical problems like JRA my daughter is very active or was and the coach was told and given her PE what she can and cant do but yesterday he allowed her to jump and run this caused a problem with her asthma i was called to the school not only was she wheezeing she was shakeing her leg was hurting what are my choices on this besides raiseing cane with this man? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 Liz thanks i am not sure if we have the 504 here but i will check on it for PE modifications i carry my daughter to Eglestons Childrens Hospital with Doctors who use Egleston we are in atlanta ga Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 A 504 plan covers your school age disabled child under the Rehabilitation Act of 1973. Children with JRA or other rheumatic illnesses who have significant difficulty walking, caring for themselves, or participating in school generally satisfy the definition of disabled. If your child does not need services in school, but does need accomodations, a 504 might be the way to go. For those of you at Texas Childrens'----They do have a social worker on the staff who can assist you with this. Generally, the social worker should be able to explain everything to you and also help you get cooperation from your school district. By the way--I don't work for Texas Childrens'. My daughter was a patient there when we lived in Corpus Christi. Long trip to see the rheumy, but worth it!! Liz Robbin40@... wrote: > > cheri > whats the special services for kids with JRA this is so new to me at this > point > i know about the IEPs for learning LD but not for physical problems like JRA > my daughter is very active or was and the coach was told and given her PE > what she can and cant do but yesterday he allowed her to jump and run > this caused a problem with her asthma i was called to the school > not only was she wheezeing she was shakeing her leg was hurting > what are my choices on this besides raiseing cane with this man? > Robbin > > ------------------------------------------------------------------------ > Save up to 75% on grocery products with FREE Shipping and a 30 Day > Money-Back Guarantee at screaminghotdeals.com > 1/2916/1/_/524922/_/956432833/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 Hi Robbin The 504 plan falls under federal law, not state law, so getting one for your daughter if she needs it should not be a problem. First she has to be acknowledged as having a disability. Generally a letter from the rheumatologist is enough evidence. Then a committee says yes or no. Kind of dumb that a committee has to decide when the rheumy writes a letter, but I guess it's all part of the beauracratic nonsense. Liz Robbin40@... wrote: > > Liz > thanks i am not sure if we have the 504 here but i will check on it for PE > modifications > i carry my daughter to Eglestons Childrens Hospital with Doctors who use > Egleston > we are in atlanta ga > Robbin > > ------------------------------------------------------------------------ > *--- FREE VOICEMAIL FOR YOUR HOME PHONE! ---* > With eVoice Now you can keep in touch with clients, vendors, co-workers, > friends and family ANYTIME, ANYWHERE. Sign Up Today for your FREE! > 1/3426/1/_/524922/_/956436418/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 my advice would be to take your daughter out of PE altogether. it may seem like it would alienate her, but with both asthma and JRA! id be on the safe side. instead, talk to the school principal and see if during PE time she could be a teachers aide. have them give her things to do like cleaning blackboards, helping grade papers (if shes old enough) and to just do simple errands for the teachers. that way there would be a time when she is away from the other children and maybe wouldnt be shy about talking to her teachers about her JRA and it would give them more insight to what shes going through. good luck cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 My child also has asthma and jra and she's still in PE. They allow her to do what she can do, but we also have a standing order from the dr saying what she limits are. on the days that she can't doing anythinh in pe she's allowed to sit down and rest. I don't want them to handicap her in no ways, but you have to do what's best for your child too.on the days she's not up for pe they let her help one of the teacher too sweetpea200001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2000 Report Share Posted April 24, 2000 Robbin, Hey How are you doing? I would also like more info on the 504 plan. I live in Atlanta too. Just outside of Atlanta in Lawrenceville. We take our daughter to Emory and see Dr. Volger. One time I asked him if there was a different Rheumy in Atlanta and he said only one other. If you find out some more info. about how that works in the state of GA. let me know. And if you ever want our daughters to meet that would be great. McKenzie is five years old. Thanks Angel Beers Re: Howdy From TEXAS! *New Member Introduction* Liz thanks i am not sure if we have the 504 here but i will check on it for PE modifications i carry my daughter to Eglestons Childrens Hospital with Doctors who use Egleston we are in atlanta ga Robbin ------------------------------------------------------------------------ *--- FREE VOICEMAIL FOR YOUR HOME PHONE! ---* With eVoice Now you can keep in touch with clients, vendors, co-workers, friends and family ANYTIME, ANYWHERE. Sign Up Today for your FREE! 1/3426/1/_/524922/_/956436418/ ------------------------------------------------------------------------ For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2000 Report Share Posted April 24, 2000 angel cooool this is so perfect finaly finding someone else here close by there is another rheumatologist here in ga and she also works with egleston and hughes spaulding and scottish rite how i found out about her was by a nurse i have known for years and was my sons nurse dr donna gibbas you can find her in the phone book i have heard good things about her to from others i think i may switch due to melissa just dont like men drs lolol you know that age thing melissa dont go see vogler again til july 18th unless we have more problems but i carry melissa to egleston childrens hospital for her physical therapy every tuesday so far when did your daughter get diagnoised ? what is she on now? laweranceville aint to far out from me but my friend said melissa does need to mingle with other kids who have this so she can see others have this and get around shes 13 yrs old in 7th grade i will check on this 504 here and let you know i myself see i am going to have to do this through the channels to get her a modified PE teacher at her school for next year and this school knows me very well and knows i dont take mess off them lolol some of these teachers taught my son lolol i am glad you replied to me at least i know i aint the only mom out in ga who has a child with this have a great day we can meet and let the girls meet also Robbin Quote Link to comment Share on other sites More sharing options...
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