Guest guest Posted August 23, 1999 Report Share Posted August 23, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi Rena, <p>Nice to get your message. I'm glad you found our list. Avascular necrosis is one of those things always at the back of my mind too, since my son's been needing to be on prednisone continually since he was first daignosed with JRA in '95. We don't have any personal experience with it but there's another parent here, Anton in France, whose son Vivien may have been affected. I'm hoping that he will write in when he sees your message and maybe be able to answer some of your specific questions. <p>There's another list I'm on, the Still's list, which is mostly adults who have adult onset still's disease (systemic jra). One (or possibly more?) of the list members there has had AVN and needed joint replacement surgeries because of it. She's written some informative messages about it. I'll look and if I can find any, I'll post them here, okay? <p>Take Care, <br>Georgina</html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 Dear Robbin, I am the mother of an 11 1/2 year old who has been diagnosed for almost 4 years now. We started out of Tolectin and are now on Voltaren. It is much easier for Taren my daughter to take but we did had a minor gastro bleed 2 weeks ago that has been attributed to the medication. We now have to give her a Tablespoon of Mylanta before her pill three times a day. Make sure you are being examined by a opthamologist also because as you will see from this list eye problems go hand and hand with this disease. On the bright side we are having a lot more good than bad days now with the new meds. She is running the 400 meter dash which was not only endorsed by the dr. and Physical Therapist but encouraged. We haven't won any races but have finished 4th in all of them. Look to the future because sometimes these kids amaze even themselves. Good Luck and Good thoughts, Toni Masura rontonitoo@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 Toni thanks for replying so far the voltaren 50 mg in the morning and 50mgs at night are doing ok she takes warm baths also but she says the bath makes her knee sting she is on 1 physical therapy a week and the therapist said only walking right now is your child on anything special at school? and how did your child start with this? i am very curious at this point lolol i want to learn everything melissa has a green bruise on her hip but the bone specialist said that was a surface vain and said when she hurts it will show up i would appreciate anything you can advise me on thanks Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 Robbin, Taren{my daughters name} started with an extremely swollen knee. In fact she had absolutely no pain at all at that point. We were standing in Target buying school aupplies and she said to her father that her knee was swollen , he looked down and it was as big sround as a 16 in softball, she is very tiny so that was huge. We immeadiately went to a quick care facility and were looked at by an orthopedist who said it was nothing to worry about and we'd need to get some xrays to be sure to come back on the following Monday.(It was a Friday night). By Monday I had called her regular Ped. who said to go ahead and get the xrays and see where we went from there. To make a long story short we mesed around with this until Oct. when she came home on crutches from school because she could not walk at all. The next week we had an appointment at Childrens Memorial Hospital to be seen by the head orthopedist; He ordered a bone scan and a bunch of blood work telling us the whole time that he was almost positive it was JRA. We now have a great Rheumy and are doing great. At school the only exceptions are an extended passing period an aid to take notes for her when shes haveing a bad day and her meds after lunch. The one thing I have learned is you have to get involed at the school for them to really understand this disease. Hang in there these kids a remarkable. Toni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 Toni, It is really good to hear that you are having such good luck with Taren's school. My daughter is in the 7th grade this year & we have had a time!! I have gone to the school & had meetings with all her teachers (at one time) and also given them & the principle some info from teh arthritis foundation about JRA...to no avail!! I get so frustrated by this.... but the school year is almost over I am hoping next year will be better. It is nice to hear ideas for ways our children could get help. Someone taking notes is a great idea. Thanks for sharing .....Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 Kris, We too have had our spells. Especially with the gym teacher. The gym teacher thinks because Taren has such a high pain tolerance and is in such a good period right now she fails to acknowledge when we are haveing a bad day and need special concideration. Hang in there school is almost over see if your school has a 504 plan for next year. Good Luck Toni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Hi A school will not generally just come up with a 504 plan for your child. You, as the parent, must request it---unless you have an unusual teacher who gets the ball rolling! A 504 is not a school or state thing; it is a federal thing. So you have federal law to help you out. Generally, a screening committee wil evaluate your child's info and decide if your child is disabled. Disabled does not have to mean in a wheelchair or anything like that. A child with JRA who has difficulty with normal school life generally qualifies. Once your child is " officially " qualified as disabled, you can get a 504 put together. All the info available should be presented to the screening committee. This includes a letter from the rheumatologist, input from the classroom teacher(maybe that is more for elementary school?), info from you as to what things are challenging to your child, etc. When it came tim to put together my daughter's 504, my husband and I were very much involved in the process. As parents, we have every right to be in on this, just as when an IEP is written. Hope this helps those of you still fighting schools and/or teachers. Liz rontonitoo@... wrote: > > Kris, > We too have had our spells. Especially with the gym teacher. The gym > teacher thinks because Taren has such a high pain tolerance and is in such a > good period right now she fails to acknowledge when we are haveing a bad day > and need special concideration. Hang in there school is almost over see if > your school has a 504 plan for next year. > > Good Luck > > Toni > > ------------------------------------------------------------------------ > You have a voice mail message waiting for you at iHello.com: > 1/3555/1/_/524922/_/956710302/ > ------------------------------------------------------------------------ > > 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 26, 2000 Report Share Posted April 26, 2000 Kris hi my daughter is also in the 7th grade what problems are you haveing ? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Liz your right i myself went to the school counselor this morning and asked for info on the 504 lolol the secretary looked at me and said where did you get info on this lolol i said well on the computer where else is there going to be info for me she said well i will have to talk with melissas counselor and we will get back with you by the end of the week lololol this afternoon melissa had the info for me lololol you as a parent have to ask for it cause the school will not just give it to you it is so strange to cause i have a handicap permit to park right at the front door they see my car and seen me getting the wheelchair out for melissa a few weeks ago lolol and no one said anything to me about any programs but since melissa is finally walking without any help they must think she is fine now lololol they are not here with her when she wakes up and is stiff in the mornings thats why i am glad i am not alone in this fight for our kids we have to adapt and help our kids Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2000 Report Share Posted April 27, 2000 Robbin, Hi! As yuo know in the 7th grade these kids have lots of books!!! My duaghter Ashton is unable to carry al these books I talked to the school about a set of books for at home to no avail. Asked for extra passing time... once agian no problem I was told then nothing. I had a conversation with her PE teacher about her self limiting her PE... unfortunately my daughter wants to be " normal " and doesn't always limit herself as she should ... and the teacher also pushes her beyond what limits should be also for example expecting her to do a mile run and jump hurdles!!!! She also is put under alot of pressure by teachers because of the time she misses from school. This year she wanted to run for vice resident of student council but had an appt at the Rheumy the day they had a campaign meeting so she was told she couldn't run! I could go on & on ...I haved talked & talked to the schol it's just is so frustrating!! Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2000 Report Share Posted April 27, 2000 Hi.. I think you hit the nail on the head so to speak.... I think when our children appear to be doing well the schools sometimes think het there's nothing wrong with this kid. When my daughter had a pretty bad flare this year they were very accomadating at school,then when she started to get better it was back to the same old stuff..... I have tried through literature & talks to explain JRA to the school bt they just don't seem to get it!! Very frustrating...... Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2000 Report Share Posted April 28, 2000 Liz last year i had to tell the dr (melissas primary dr) to write a note stateing she cant handle carrying her books or in a back pack due to her scoliosis and the school gave her a elevator pass this year the first thing i did was get a permanant pass for her she did great no up and down stairs she was able to stay in school everyday till my mom passed away in sept 1999 she took 3 days off but she was there everyday when she went back till this flare up with her hip and leg in the last 6 weeks she may have been 15 or less days absent the rest so this had a effect on her grades she went from B honor roll to first 6 weeks Cs and all of the teachers say the same in their report attendance effecting grade so i have to have a talk with them i did talk with 1 teacher and she said melissa could bring the grade up before gradeing full semester the P E is a required course she has to have it so it will be modified what i worry about is melissa feeling like she can do what the other kids do and fall i have stayed at home next to the phone because of this from what i understand her left leg bones are thin the name is osteopenia and the connective tissue disease so the physical therapist at the hospital said no runnin or jumping and try not to fall on the leg so i am assumeing that the leg would break if she did these things do you know if they have braces for kids this age so they can have extra suport on the joint? hows you child doing? i am going to reask for books for melissa so we have them here and school Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2000 Report Share Posted April 28, 2000 Hi Robbin I'm glad you are now getting info from the school. As you write 's 504, remember that each 504 is an individual thing. There is often a list of " standard accomodations " , but there might be other things you need. Sometimes, a child with arthritis cannot carry books in her arms, but can manage a backpack. If the school does not generally allow backpacks to be used during the day, then it would be considered an accomodation to have that child carry one. Other things include an extra set of books at home for the child who can't manage carting the heavy books back and forth, extra time to change classes if walking is a challenge, extra time to change into PE clothes for the child who has difficulty getting dressed. I haven't tried to get physical or occupational therapy for in the school, as our insurance is good about that, so I'm not sure about obtaining those services with a 504. An IEP (Individualized Education Plan) might be needed to obtain formal services. It is amazing how we sometimes have to fight the schools for our kids to get the help they needed. I hope that someday that won't be the case for so many. A good counselor is a wonderful ally, and does have a great one at her school. It's a good thing, too, because the principal doesn't want to do anything extra for anyone!! Liz Robbin40@... wrote: > > Liz > your right i myself went to the school counselor this morning and asked for > info on the 504 lolol the secretary looked at me and said where did you get > info on this > lolol i said well on the computer where else is there going to be info for > me > she said well i will have to talk with melissas counselor and we will get > back with you by the end of the week lololol this afternoon melissa had the > info for me lololol > you as a parent have to ask for it cause the school will not just give it to > you > it is so strange to cause i have a handicap permit to park right at the > front door > they see my car and seen me getting the wheelchair out for melissa a few > weeks ago lolol and no one said anything to me about any programs > but since melissa is finally walking without any help they must think she is > fine now > lololol they are not here with her when she wakes up and is stiff in the > mornings > thats why i am glad i am not alone in this fight for our kids > we have to adapt and help our kids > Robbin > > ------------------------------------------------------------------------ > Get 3 months FREE and a chance to WIN a trip to London, England when > you receive, manage and pay your bills online with Paytrust.com! > Stamps, checks and bills in your mailbox are history. Enroll Today! > 1/3556/1/_/524922/_/956801651/ > ------------------------------------------------------------------------ > > 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 28, 2000 Report Share Posted April 28, 2000 Kris your right just as with my daughters asthma they think if she aint panting for air or wheezeing shes A 1 shape lololol they dont realize things inside the child but i have made it clear on her asthma and think i will have to make this very clear to them even tough shes walking unassisted at this time its on their heads if she gets hurt they are responcible as long as you make copies and tell them to put this in your kids record you have to make every possilbe effort to do this and also you keep the original i learned this a few years ago if the doctor gives you anything about your kid tell the councelor you want to get copies then you hand deliver a copy to each teacher the councelor the principal even the lunch room lady the P E teacher even your schol nurse anyone that sees the child on daily basis this covers you also everytime you get a report card go get a attendance report on the child this will cover you also you then have in your file what the school has if anything comes up you can always show them oh and write down you did give out copies you will be suprized at the responce if anything happens at school lololol this just takes a few minutes but i know in the long run this is what a parent has to do i also copy each absent note and tardy note i send to the school and each attendance report i get all of this is your right to get and any tests the child takes in school all you have to do is ask for it and you have the right to ask when the school with be dicussing your child and have it on record that unless your informed and attend each meeting you dont want your child talked about except with you OUR RIGHT AS A PARENT and dont you let the school make you feel different about your child in any form this is your child not theirs you make your own deccision lolololol Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2000 Report Share Posted April 29, 2000 Kris this is where the child wants to be normal melissa also has this problem i am honest with her about her condition so if something happens i can said i waned you honey what state are you in ? also about the pass do yall have a elevator at the school ? if so ask the dr to write a note to allow for a elevator pass give the school a copy you keep the original in your records also if you cant get anything done at the school level go to the distict this helps let me know Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2000 Report Share Posted April 29, 2000 Robinn and Kris, Its not just state law its FEDERAL law. The 504 section is federal law. Yes , you need a doctors note verifiying the problems, but the school system, by law, needs to provide for her. They even offered, if I needed, someone to take notes for her, which Alana would just die if that happened, but yes they did offer. Good luck. Bonnie Regional Director, PHD Products http://phdproducts.com mailto:bonnie@... 800-863-3403 Re: JRA >Kris >this is where the child wants to be normal >melissa also has this problem i am honest with her >about her condition so if something happens >i can said i waned you honey >what state are you in ? >also about the pass do yall have a elevator at the school ? >if so ask the dr to write a note to allow for a elevator pass >give the school a copy you keep the original in your records >also if you cant get anything done at the school level go to the distict >this helps >let me know >Robbin > >------------------------------------------------------------------------ >Accurate impartial advice on everything from laptops to table saws. >1/3020/1/_/524922/_/957041553/ >------------------------------------------------------------------------ > >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 May 3, 2000 Report Share Posted May 3, 2000 Hi Bobby, It's very kind of you, to help your friends out in this way. I hope their daughter is doing okay. What kind of JRA does she have? My son has the systemic type. We live in Hawaii and there's no support group locally but if you call your local branch of the Arthritis Foundation they should be able to let you know about local resources. Also, if the girl's parents have any more specific questions, please don't hesitate to ask here and we'll try our best to help. Take care, Georgina saxxon442@... wrote: > Hi my name is Bobby, > I have two wonderful friends that have a little girl of 4 that has > just been diagnosed with JRA. They are new to this and would like > all the information that they can get. I joined this group to help > them with any problems they may have and help them open up the > communication lines. They don't have a computer so I am trying to do > some research for them and if speaking to anyone at least initially > it will be me. > > I am primarly looking for support groups in the Shenandoah Valley of > Virginia or Staunton, Waynesboro area. I'm trying to find them as > close to home for them as possible. Charlottesville and onburg > are also close. Can anyone help me with this, I would certainly > appreciate it. > Thank you, > Bobby Hanger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Hi Robbin I'm sorry I didn't get back to you sooner. Half my family had a lovely stomach bug all last week. Talk about fun..... I know nothing about braces for the condition you have described (osteopenia). In fact, I know nothing about that problem other than what you have said!! Have you asked an orthopedic doctor about a brace? I would think that would be the one to ask. As for PE being a required class.....The school can exempt your daughter from regular PE. With proper info from the docs and all the paperwork in order, they must come up with a PE program that is safe and appropriate for your daughter. You mentioned sitting by the phone in fear of a call from school. Have you contacted local cell phone companies? Some have very inexpensive plans for people who just want the phone for emergency use. I don't know which companies---I've just seen ads here and there. Explain what you need and see what they offer. At least that way you can get out and know that the school can still reach you. Any luck with the 2nd set of books yet? If it is in the 504, they MUST provide it! You might have to get pushy, but it is worth it!! Take care, Liz Robbin40@... wrote: > > Liz > last year i had to tell the dr (melissas primary dr) to write a note > stateing she cant handle carrying her books or in a back pack due to her > scoliosis and the school gave her a elevator pass this year the first thing > i did was get a permanant pass for her she did great no up and down stairs > she was able to stay in school everyday till my mom passed away in sept 1999 > she took 3 days off but she was there everyday when she went back till this > flare up with her hip and leg in the last 6 weeks she may have been 15 or > less days absent the rest so this had a effect on her grades she went > from B honor roll to first 6 weeks Cs and all of the teachers say the same in > their report attendance effecting grade so i have to have a talk with them > i did talk with 1 teacher and she said melissa could bring the grade up > before gradeing full semester > the P E is a required course she has to have it so it will be modified > what i worry about is melissa feeling like she can do what the other kids do > and fall > i have stayed at home next to the phone because of this > from what i understand her left leg bones are thin the name is osteopenia > and the connective tissue disease so the physical therapist at the hospital > said > no runnin or jumping and try not to fall on the leg so i am assumeing that > the leg would break if she did these things > do you know if they have braces for kids this age so they can have extra > suport > on the joint? hows you child doing? i am going to reask for books for > melissa > so we have them here and school > Robbin > > ------------------------------------------------------------------------ > Was the salesman clueless? Productopia has the answers. > 1/3019/1/_/524922/_/956891011/ > ------------------------------------------------------------------------ > > 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 May 4, 2000 Report Share Posted May 4, 2000 hi liz sorry to hear yall been sick on the brace melissas therapist is now going to send her to occupational to get a wrist brace and knee brace for support and suggested a bigger pen pencil to wrie with Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 thanks for the info Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2000 Report Share Posted May 8, 2000 Hi Robin, Just wanted to let you know that while a bigger pencil/pen is a good idea, they are harder to sharpen ... as most don't fit into the standard size sharpeners. What we've found helpful is to buy a package of pencil/pen grips, little foam rubber attachments that you slide the pen or pencil into. They're available at most stores that sell school supply type items and they come in a wide variety of colors. About $2 for a set of 5, around here. Provides an larger/easier surface to hold on to, so the fingers don't get sore as quickly. there is also a special brand of pen that is easier to hold onto, called Dr. Grip. Those are a bit expensive but work very nicely. Since Josh is still using pencils for his schoolwork, we haven't purchased those yet. Maybe next year, though. They sell a set of two at Costco, for about $12.00. At regular stores, I've seen them for about $8 each. Haven't seen refill for them, though. Take care, Georgina Robbin40@... wrote: > > hi liz > sorry to hear yall been sick > on the brace melissas therapist is now going to send her to occupational > to get a wrist brace and knee brace for support and suggested a bigger pen > pencil > to write with > Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 Hi, I have a question that if any one can give help it would be great. My daughter jennifer went to her doctor yesterday and had bloodwork and urine test (The usual routine) And the nurse called me today with the results every thing was about the same, but she said they found small traces of blood in her urine. She said it was probably nothing to worry about and she would talk to the doctor and call me tomorrow. Now was sick this weekend throwing up and no appeitate, and the doctor said it sounds like a virus, but no one else in the family got it. Even today she said her stomach hurts and I told her it could be from the antibotics. Has this ever happened to any of you and want can be done about it. Budd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 , I just went through the same thing with my daughter and she ended up being impacted, even though she had loose bowels. This was found out when I took it to the E.R.and they did a test on her stomach after the pepcid ad didn't help. So be careful with her complaining about her stomach. It could be a virus on the other hand too. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 Many times with kidney infections you have blood in the urine. Ra can cause inflammation in the kidneys, which could explain the traces of blood. I have always wondered if the is a connection between RA and kidney infections. I've noticed that many times I'm in a particulary bad flare I usually end up with a kidney infection. --- The Schuh Family <dschuh@...> wrote: > Hi , > The past 2 times that I have had UAs <urine tests> > there have been traces of > blood, which can indicate internal bleeding. both > times I have had to take > stool samples to test for occult blood and both > times they came back > negative so the doctor said not to worry. The other > symptoms are probably > just coincidence. > > Hugs, > Deb > > With Gods blessings, > The Schuh Family > Dan, Debbie, Dottie, Kody and Wyatt > > > > Re: JRA > > > Hi, I have a question that if any one can give > help it would be > great. My daughter jennifer went to her doctor > yesterday and had > bloodwork and urine test (The usual routine) And the > nurse called me > today with the results every thing was about the > same, but she said > they found small traces of blood in her urine. She > said it was > probably nothing to worry about and she would talk > to the doctor and > call me tomorrow. Now was sick this weekend > throwing up and > no appeitate, and the doctor said it sounds like a > virus, but no one > else in the family got it. Even today she said her > stomach hurts and > I told her it could be from the antibotics. Has this > ever happened to > any of you and want can be done about it. > Budd > > > ===== 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 June 29, 2000 Report Share Posted June 29, 2000 Hi kevin i was amazed also the kids see it in a different way than a adult its normal for them cause they dont know any other way i watched a few of these talk shows last week and those kids amazed me also these kids are gods little angels to be a better person you have to overcome obstacles or should i say we have to cause the kids are wonderful i say this as support to all parents kids do what they can and have determination to do it keep hopes and faith up with them and always say I LOVE YOU and give a big hug thats what a kid really wants approvement Robbin Quote Link to comment Share on other sites More sharing options...
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