Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 Michele- My daughter is 18 mos and ANA positive. She recently had a slit lamp exam. Here's what my experience was: When your son goes to the opthamologist, they'll look at his eyes through the slit lamp for signs of inflammation. Then they'll dilate his eyes so they can look at the back of the eyes, too. You can't necessarily tell, just by looking, whether there's inflammation. Sometimes there's redness and discharge, but not always. Even if your son isn't flaring, it's possible his eyes could swell. That's why it's so important to have regular checkups. Is he ANA positive? I've been told that, generally, it's females with pauciarticular jra who are ANA positive who are at greatest risk for uveitis, but anyone with jra should have regular checkups (especially those who are ANA positive). If there's inflammation, it can be treated with steroid drops. The most important thing is to keep getting his eyes checked; the real problems arise if the inflammation continues untreated. Best of luck to you and your son. Does he have a diagnosis: poly, pauci or systematic? I know it's difficult and easy to focus on all the things that could happen. But I think you have the right attitude. Get all the information you can. Then you'll know what questions to ask, and what to look for. It gives you some small sense of " control " over the situation. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 hi i am Robbin live in atlanta ga you need to have the eyes checked and he needs to see the dentist tell both the eye dr and the dentist he has JRA so they can check for everything and the slightest changes in the child melissa also has asthma and allergies etc.. make sure you keep all appointments with reg ed and ped rhuemy and eye dr and dentist also if you feel the child needs to see the dr call them if you feel you need to talk or just ask a question call the dr speak your voice if your confused ask questions this always helps relieve your fears the doctor is the one you should feel comfy with and will be there ANYTIME you may need them remember your the voice of your child you are right about the asthma i got use to that and was able to about pinpoint the triggers lolol then JRA comes and knocks me for a spin this one has no limits it attacks the body its a auto immune disease now as i have told family and teachers we just wait til she wakes up to see how our day will be dont dwell on it but adjust and never let it beat you i will send out some links for the group these are the ones i use and really understand what and how this JRA works your doing the best your learning about it georgina has a website that lists alot of places also she has a great site also JRAworld is another great site if you feel like talking or you think you have a dumb question ask the group the question is not dumb if you thought of it it will only be a unanswered question Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 All children with JRA require eye checkups. A good opthamologist knows what he/she is doing. There is not too much you can do or even see yourself. The can explain what they are looking for. It does not hurt, but expect for them to use drops to dilate his eyes, bring along sunglasses. My daughter has been egting eye exams every four months, sice she was 4, she is now 10. There are many children who do not have the uveitis. Most children don't have smytems, thats why the eye exams are crucial. It is Ok okay to get concerned about what is going on with your son. It is overwhelming. This list is a great place to be, everyone here is supportive. Good Luck. Hang inThere. SHU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 You can do a visual check of Uveitis in certain cases.Look at your childs pupils ,preferably when dialated,and look to see if the iris is torn or pulled into the pupil.It is sometimes undetectable but worth a try. Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Thanks to all for the responses. A little background: my son is pauciarticular currently having pain in his left ankle and tendon. He has some stiffness in right ankle and his knees are sometimes sore. He does have Osgood Schlatter in his left knee - common in boys his age. He is ANA positive so we know with no doubt it is arthritis. Our dx came after several months of ankle pain. He did have one incident which I now wonder if it was a flare - last fall he had problems with his asthma and was put on a course of steroids. The next day he began to have pains in his joints which got to the point where you could not touch him and he had difficulty walking. This lasted for about a week and gradually went away. I felt it was the dose of steroids as we had never seen anything like it and the steroids were the only unusual thing. He had had steroids in the past with no problems but I felt the dose was high (it wasn't according to 3 doctors and a pharmicist). The ped. ordered some blood work but not the ana test. She is really a great doctor but we had no reason to suspect this. I wonder now if this was a flare like I have read about. Any ideas? He has not done this since. The ankle pain began in April about 5 months after this incident. Also curious about the dentist reference. Is there something I should be aware of? The rhuemy did not say anything. Once again, thanks for the help and encouragement. Today isn't such a good day for him. He just started doing some pt exercises at home and was very sore today when he went to school. I am worried, of course.What a releif to unload to those who understand. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Liz, Thanks for sharing the info on the Virginia laws for the 504 and IEP. We live in Salem, VA, the Roanoke Valley area. I plan to get these going for Kelsey at the same time she is registered for Kindergarten, which isn't until fall 2002. My other daughter is in 3rd grade this year and will take her first SOL tests, which we are NOT looking forward to! My husband and I both went to Salem schools, and with our own experiences as students, and now as parents dealing w/ the administration I know our fight won't be an easy one. There are some real cold hearted people in our school system, only caring about sports and money. Anyway, thanks for sharing the information :-) W. (Kelsey's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 , I saw your email and thought of my own daughter who is also ANA positive with iritis. Is uveitis an iritis the same? She has been receiving steroid injections every six months for two and half years in her right eye. That has been the only thing to keep her eye calm as the doctor says. Besides her eye her JRA has been under control with methotrexate and physical therapy. Both knees and a few fingers are involved. I have one more question about the 504 plan for anyone who can answer. We went to McKenzie's school (she is only in kindergarten) and asked about the 504 plan for her. They told us she did not qualify because she did not meet all three requirements. Because she was an above average student and the JRA did not affect her learning she was not eligible. I thought that they only had to meet one requirement and since when did JRA affect your learning ability? The one reason we were interested was because a lot of parents at the JRA national conference said it was a good idea to put it in place now in case of future problems. Any help on this or websites that state the full law of the 504 plan would be helpful. Thanks again Angel Beers Re: Uveitis Michele- My daughter is 18 mos and ANA positive. She recently had a slit lamp exam. Here's what my experience was: When your son goes to the opthamologist, they'll look at his eyes through the slit lamp for signs of inflammation. Then they'll dilate his eyes so they can look at the back of the eyes, too. You can't necessarily tell, just by looking, whether there's inflammation. Sometimes there's redness and discharge, but not always. Even if your son isn't flaring, it's possible his eyes could swell. That's why it's so important to have regular checkups. Is he ANA positive? I've been told that, generally, it's females with pauciarticular jra who are ANA positive who are at greatest risk for uveitis, but anyone with jra should have regular checkups (especially those who are ANA positive). If there's inflammation, it can be treated with steroid drops. The most important thing is to keep getting his eyes checked; the real problems arise if the inflammation continues untreated. Best of luck to you and your son. Does he have a diagnosis: poly, pauci or systematic? I know it's difficult and easy to focus on all the things that could happen. But I think you have the right attitude. Get all the information you can. Then you'll know what questions to ask, and what to look for. It gives you some small sense of " control " over the situation. Diane To receive JRA-related news and research emails, please consider joining the JRA-info list. To sign up, visit: jra-info If you subscribe in the digest mode you will receive no more than one email per day. For links to websites with JRA info please visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi Angel Section 504 defines eligible individuals this way: 'Handicapped persons' means any person who has a physical or mental impairment which substantially limits one or more major life activities, has a record of such impairment, or is regarded as having such an impairment. I pulled this from the notebook on educational rights for children with arthritis, put out by the Arthritis Foundation. To be eligible for services under a 504, the handicapping condition must affect a " major life activity " . Things such as climbing stairs constitute major life activities. Our kids often qualify under the " other health impaired " category. It means limited strength, vitality or alertness due to chronic or acute health problems. is also an above average student-- This year she entered the center for gifted students, her first year eligible. Arthritis has never affected 's ability to learn. Her problems are physical-- How do you sit on the floor for music class when you can't get up again? How do you stand thru art class when the pain makes you cry after standing for a short time? How do you do push-ups when your wrists don't bend and you are already weak? The list goes on. It was because of things like that that has a 504. Thankfully, is doing much better than when we wrote the 504. However, this year she has to take the Virginia Standards of Learning tests, so we have a very detailed 504 in place. It clearly states that accomodations are not always needed, and some are only for during big flares. But under Virginia law, if the accomodations are not in a 504 or IEP when it is test time, then accomodations cannot be made. Basically, that means if your JRA child flares suddenly at test time, he or she is out of luck as far as accomodations go. There is a grass roots movement going on to change some of this, but for now that's the way it is. That's why I am so in favor of having things in place. I don't know if any of this helps you, but you can e-mail me privately and I'll be happy to share more info on 's plan. Hope all is well there, Liz Angel Beers wrote: > > , > I saw your email and thought of my own daughter who is also ANA positive > with iritis. Is uveitis an iritis the same? She has been receiving steroid > injections every six months for two and half years in her right eye. That > has been the only thing to keep her eye calm as the doctor says. Besides her > eye her JRA has been under control with methotrexate and physical therapy. > Both knees and a few fingers are involved. > I have one more question about the 504 plan for anyone who can answer. We > went to McKenzie's school (she is only in kindergarten) and asked about the > 504 plan for her. They told us she did not qualify because she did not meet > all three requirements. Because she was an above average student and the JRA > did not affect her learning she was not eligible. I thought that they only > had to meet one requirement and since when did JRA affect your learning > ability? The one reason we were interested was because a lot of parents at > the JRA national conference said it was a good idea to put it in place now > in case of future problems. Any help on this or websites that state the full > law of the 504 plan would be helpful. > Thanks again > > Angel Beers > > Re: Uveitis > > Michele- > > My daughter is 18 mos and ANA positive. She recently had a slit lamp exam. > Here's what my experience was: When your son goes to the opthamologist, > they'll look at his eyes through the slit lamp for signs of inflammation. > Then they'll dilate his eyes so they can look at the back of the eyes, too. > You can't necessarily tell, just by looking, whether there's inflammation. > Sometimes there's redness and discharge, but not always. Even if your son > isn't flaring, it's possible his eyes could swell. That's why it's so > important to have regular checkups. Is he ANA positive? I've been told > that, generally, it's females with pauciarticular jra who are ANA positive > who are at greatest risk for uveitis, but anyone with jra should have > regular checkups (especially those who are ANA positive). If there's > inflammation, it can be treated with steroid drops. The most important thing > is to keep getting his eyes checked; the real problems arise if the > inflammation continues untreated. > > Best of luck to you and your son. Does he have a diagnosis: poly, pauci or > systematic? I know it's difficult and easy to focus on all the things that > could happen. But I think you have the right attitude. Get all the > information you can. Then you'll know what questions to ask, and what to > look for. It gives you some small sense of " control " over the situation. > > Diane > > To receive JRA-related news and research emails, please consider > joining the JRA-info list. To sign up, visit: > jra-info > If you subscribe in the digest mode you will receive no more than one email > per day. > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > > To receive JRA-related news and research emails, please consider > joining the JRA-info list. To sign up, visit: jra-info > If you subscribe in the digest mode you will receive no more than one email per day. > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 no matter how cold hearted schools can be the federal law is behind you on the 504 i think thats what makes them MAD cause the federal gov actually has a reason to look into the school system if theres a complaint and they get in trouble the schools get money for each child that attends school if they miss a day they lose alittle money wether the child is sick or not this is how it was explained to me thats why they are so hard on kids with GOOD reasons for being out and not playing hookey go to this site and keep it http://www.reedmartin.com/ Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2000 Report Share Posted November 5, 2000 In a message dated 11/02/2000 4:31:33 PM Pacific Standard Time, mabeers@... writes: > Because she was an above average student and the JRA > did not affect her learning she was not eligible. Angel In a way I disagee. JRA can affect her learning. If her fingers and involved, it may be difficult for her to learnto write. I know 's wrists get so swollen, she can't write. Also Jen is out of school 5+ times a month. She needs help at times to catch up. Fight for her !! ( not that you wouldn't ) Don't let them push you around. Marcie, s Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2000 Report Share Posted November 5, 2000 Hi i think i have missed something and got the tail of this just because shes a above average student does not disqualify her to be eligible for a 504 if this is what this is about my daughter is a good student B honor roll last year but she still had to have help with getting around and carrying her books this year i did a 504 on her on the safe side and she has a second set of books which helps ALOT she also has a elevator pass which helps to get to class she has extra time to get to class she has extra time to go to the locker she also has extra writeing time and some more added PE is modified to low impact just because she has a physical disadvantage doesnt mean she cant learn the 504 plan helps the child so she dont get behind and will learn in a main stream like normal kids fatter pens to help her control her writeing she even takes home ec sewing is a problem but she has adjusted some what dont let anyone tell you the child is not qualified for a 504 if they have JRA they are qualified take advantage of it if you dont need it now you may in the future if you need help with this please let the group know we can get you info on this to help these kids may be physically disadvantage BUT they are NOT mentally disadvantage in no way Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Pierre,Billie,Mark Ethel and all of you who have shared your time and information with me...thank you so much. Forgive me for not responding to each of you personally but due to my current vision(or lack of)that I am experiencing I will thank you all at once. My visit to the doc yesterday was encouraging in that I had improved from last week although I still have alot of inflammation. He wants to see me back in two weeks to see if I have further improvement at which time we will decide whether ir not to have the vitreous fluid removed. I was very disapponted to see another side to this doc when I tried to discuss antibiotics with him..He was "one of those" doctors who talked to me as if I were 10 years old (he's my age} and kept calling me "young lady" as if thaat would valdate his poinof viewt. He told me that I had a "genetoc disease" that would have eventually led to Uveitis and that all the antibiotics in the world would not change that...my...what wisdom... I am too far down the road with this to argue or try to convince someone else what I have found to be true, I no longer tolerate these people very well because I choose not to expend the emotional energy. I simply leave. This Doctor has proved to be good at removing cataracts and that's all. How sad. But I won't waste any more time there. I an juicing, eating health building foods, taking ny supplements and vitamins and considering my next step prayerfully...and taking minocon. Again thank you all for your help. It is invaluable to me! God Bless... C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 My daughter was diagnosed with Uveitis about a year ago or less. She has been on Prednisolone 4x a day and cyclogel 2x a day as well as another eye drop 2x a day. This Uveitis is from her jra but she has not had any active flare ups in a very long while (she is only 4) anyhow, just this week I brought her to her eye appt. and sure enough she has already lost vision in her right eye.. I did not know any of this, how long she has been w/out it and so on. She has catarax now. The eye doctor wants to do surgery asap. And the Left eye is also showing signs of it. I understand that some of the medicines she was taking to ease the inflamation of the Uveitis may cause catarax, But what interested me was that while me duaghter was on oral steriods there was not much activity in her eyes but once off of it the uveitis began to act up. So this week I have to bring her in again but I am thinking about bringing her to another hospital for a second opionion.. any suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 Alumeze I too exprienced cataracts doue to medication, Cortizone! at age 13 I had Uvelitis that was maintained with oral steroids too. Although at the time, early 70's they wouldn't and couldn't do surgery because of my age at that time they wouldn't do caract removel on children, and alos I was expienecing a lot of flares, due to the jra. I also exprienced iritis as well. at least thats what they said at the time. I was later switched to predisone and took that oraly for a number of years. But the time when my eyes were at their quietest, was when I was taking Keflex for an infection, the eye doctor said that he had other patients tell him the same thing, but that was all the further he pursude it. A second Opinion is Always an Excellent Idea, although it does tend to ruffle the feather of some doctors, when their opinion is questioned! But I say, when it your, or your childs health, well then QUESTION AWAY! My opinion! anyway. Best wishes for a positive outcome for your little one. Rusty Limbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 I took to the eye doctor today, and sure enough, she has inflammation in both eyes. The doctor prescribed prednilosone 6X per day and cylogel 1X per day. I just spent the past 45 minutes fighting with trying to get the drops in her eye. I feel like a real weanie because I cannot get a single drop in this two year old's eye. She completely freaks out and I cannot hold her hands and try to pry her eyes open at the same time. I think I wasted half a bottle that ended up on her face. She's kicking and thrashing --- total nightmare. Any suggestions? I don't know if they'll do the eye drops at school for her, or given the experience I just had, how they'll be able to. I don't know what to do. Also, I've now just read the email about the little girl losing sight in her eye. Completely? And it's reversible with eye surgery? I know only the very basics about this condition. I'm very upset. For those of you whose children have developed iritis/uveitis, once a child is diagnosed with this, is it a chronic condition like the jra, or can kids have a bout with it and then it's gone? Diane (, 2, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Rusty, I think I'll try the drops while she's sleeping though she is a pretty light sleeper. Problem is she doesn't sleep enough for me to get the 6 doses per day in. I also tried asking her to keep her eyes closed so I could pull down the bottom of her lid. Forget that. I'll keep trying. Thanks Georgina for the new posts on this eye inflammation. Diane (, 2, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi Dianne, My uvelitis has been pretty quiet, for the most part there has been no signs of iritis for quite a few years. I sympathize with the chore of putting the drops in 's eyes. Have you considered trying to put them in while she asleep. That is if isn't a light sleeper. hugs and warm wishes, Rusty Limbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 Hi Diane, My name is and my 8 year old daughter, Jessie has polyJRA with related uveitis. I'm sorry to hear that your daughter has eye issues as well. Yes, uveitis is chronic, just like the joint issues. As a matter of fact, in our case, Jessie's eyes have been more stubborn to treatment than her joints have. She is on pred-forte eye drops as well. Please, keep in mind, pred-forte is a great topical steroid. In Jessie's case, it quieted the uveitis quickly but, as with most steroids, there are some side effects that should be mentioned. The uveitis that your daughter has can cause glaucoma (pressures within the eyes to rise) but, so can pred-forte. Like I said, pred-forte works great for uveitis but, please make sure that your opthal monitors the side effects from the pred carefully by measureing the pressures in your daughters eyes. At this time, my daughter has glaucoma from the pred. Her pressures have been slowly dropping so we are hoping to find a " happy balance " between pred and the pressures. So far, it seems to be working...her pressures are coming down and the uveitis is quiet. Pred-forte needs to be tapered slowly (just like oral prednisone) so keep that in mind too. As far as some suggestions in getting a toddler to lie still for eye drops. When Jessie was that young I used to sit on the floor with my legs straight out in front of me and Jessie lying between my knees. Her feet would be facing my stomach, her head at my feet. I would scootch her so that her legs would wrap around my waist and then I would gently place a leg over her arm and shoulder, on both sides, and brace each one of my legs along side of her head to keep her from turning it. This would free up my hands (and basically papoose her) and hold her eye open with one hand and put the drops in with the other. When I type it all out it certainly sounds medevil LOL...but, it did work. When she had to have drops at school I would give them myself at school or do the drops just before or just after school. I wish you luck on the drops. If you have any questions, my email address is angel87cat@... ((HUGS)), --- dbornscheu@... wrote: > I took to the eye doctor today, and sure > enough, she has inflammation > in both eyes. The doctor prescribed prednilosone 6X > per day and cylogel 1X > per day. I just spent the past 45 minutes fighting > with trying to get > the drops in her eye. I feel like a real weanie > because I cannot get a > single drop in this two year old's eye. She > completely freaks out and I > cannot hold her hands and try to pry her eyes open > at the same time. I think > I wasted half a bottle that ended up on her face. > She's kicking and > thrashing --- total nightmare. Any suggestions? I > don't know if they'll do > the eye drops at school for her, or given the > experience I just had, how > they'll be able to. I don't know what to do. Also, > I've now just read the > email about the little girl losing sight in her eye. > Completely? And it's > reversible with eye surgery? I know only the very > basics about this > condition. I'm very upset. For those of you whose > children have developed > iritis/uveitis, once a child is diagnosed with this, > is it a chronic > condition like the jra, or can kids have a bout with > it and then it's gone? > > Diane (, 2, pauci) > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 They started with prednisolone 3x a day and now it's only 5 times a day, But like I said before she started with the Uveitis and it's now cataracts in her right eye. The docs. want to do surgery right away but of course the jra complicates things. Trying to get eye drops into sarah's eye was so hard at first I almost gave up somtimes but Now it's like nothing .. I just gotta tell her "ok sarah. time for the white drop" and she tilts her head up ready for it. I did make a chart with times she needs the drops and decorated it with stickers.. at first it was at the end of the day she would get a lil prize(stickers..lil' note pad etc) for cooperating with putting the drops in, but now it's at the end of the week and I give her a pretty big prize (puzzles. coloring books..etc).. maybe u can do somthing like that for your daughter.. But yes she did lose her eyesight due to the cataracts.. I'm not sure if it's somthing that was going to happen b/c of the uveitis or if it's some side effect of the eye drops. I have a appt. with the eye doc . this thurs.. so if anyone can come up with some questions i should ask..please let me know. I'm a young , single mom.. just trying to get through this so any advice is appreciated. Thanks =) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Hi , I just wanted to say thanks, for sharing so much helpful information. When I was reading your message I could visualize you and Jessie getting ready for the next eye drops : ) Seems like you came up with a very creative, workable solution to what can, by the sounds of it, be a very difficult (but necessary) task. I guess (I hope!) that over time the procedure has gotten much easier? : ) Are you the same Mom that has a webpage describing how JRA can affect a child's eyes? With a diagram of an eye? If so, can you please post the URL for the site. I don't have my old bookmarks on the new computer and I'd love to include a link for that site when my new home page is done. Thanks, Georgina My name is and my 8 year olddaughter, Jessie has polyJRA with related uveitis. I'm sorry to hear that your daughter has eye issues aswell. Yes, uveitis is chronic, just like the jointissues. As a matter of fact, in our case, Jessie'seyes have been more stubborn to treatment than herjoints have. She is on pred-forte eye drops as well.Please, keep in mind, pred-forte is a great topicalsteroid. In Jessie's case, it quieted the uveitisquickly but, as with most steroids, there are someside effects that should be mentioned. The uveitisthat your daughter has can cause glaucoma (pressureswithin the eyes to rise) but, so can pred-forte. LikeI said, pred-forte works great for uveitis but, pleasemake sure that your opthal monitors the side effectsfrom the pred carefully by measureing the pressures inyour daughters eyes. At this time, my daughter hasglaucoma from the pred. Her pressures have beenslowly dropping so we are hoping to find a "happybalance" between pred and the pressures. So far, itseems to be working...her pressures are coming downand the uveitis is quiet. Pred-forte needs to betapered slowly (just like oral prednisone) so keepthat in mind too. As far as some suggestions in getting a toddler to liestill for eye drops. When Jessie was that young Iused to sit on the floor with my legs straight out infront of me and Jessie lying between my knees. Herfeet would be facing my stomach, her head at my feet. I would scootch her so that her legs would wrap aroundmy waist and then I would gently place a leg over herarm and shoulder, on both sides, and brace each one ofmy legs along side of her head to keep her fromturning it. This would free up my hands (andbasically papoose her) and hold her eye open with onehand and put the drops in with the other. When I typeit all out it certainly sounds medevil LOL...but, itdid work. When she had to have drops at school Iwould give them myself at school or do the drops justbefore or just after school. I wish you luck on the drops. If you have anyquestions, my email address is angel87cat@...((HUGS)), Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 Hi, Josh hasn't had any eye involvement from his systemic JRA but he's needed oral steroids, high doses at times, that likely caused 'beginning cataracts.' He sees the eye doctor at least twice a year for testing and exam, to monitor for any changes (Josh also takes Plaquinel). There fortunately hasn't been any noted progression. His doctor did say at one point that if he continued to take steroids at relatively high doses (7.5 borderline to 10+ mgs a day) over a period of time he would most likely need to have cataract surgery. He said the operation was a very simple procedure but that it wouldn't be feasible until Josh was about 16 years old. Take Care, Georgina AlumezeI too exprienced cataracts doue to medication, Cortizone! at age 13 I hadUvelitis that was maintained with oral steroids too. Although at thetime, early 70's they wouldn't and couldn't do surgery because of my ageat that time they wouldn't do caract removel on children, and alos I wasexpienecing a lot of flares, due to the jra. I also exprienced iritis as well. at least thats what they said at thetime. I was later switched to predisone and took that oraly for a numberof years. But the time when my eyes were at their quietest, was when I was takingKeflex for an infection, the eye doctor said that he had other patientstell him the same thing, but that was all the further he pursude it. A second Opinion is Always an Excellent Idea, although it does tend toruffle the feather of some doctors, when their opinion is questioned! ButI say, when it your, or your childs health, well then QUESTION AWAY! My opinion! anyway. Best wishes for a positive outcome for your little one. Rusty Limbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2002 Report Share Posted February 14, 2002 Dianne, I am very behind on my email - so you have probably resolved this by now - the hardest medication experience I have had with Robbie is trying to get eye medicine in his eye (his was ointment i had to " line is lower lid with " yeah - right.) Robbie was two at the time also - and what a struggle - I finally put him on the floor, straddled him so that my legs kept his arms and most of his body from moving - my knees holding his face and held his little eye open with one hand - with him kicking and screaming the entire time. Awful! I felt like a weanie too, when I couldn't do it - and then I felt like a monster when I figured out this was the way to do it. I didn't put any weight on him - just held him still with my legs - but when I got ready for the second time he said " Mommy, please don't sit on me again, I won't move, I promise. " Val Rob's Mom (4,systemic) In a message dated Mon, 4 Feb 2002 1:55:34 PM Eastern Standard Time, dbornscheu@... writes: > I took to the eye doctor today, and sure enough, she has inflammation > in both eyes. The doctor prescribed prednilosone 6X per day and cylogel 1X > per day. I just spent the past 45 minutes fighting with trying to get > the drops in her eye. I feel like a real weanie because I cannot get a > single drop in this two year old's eye. She completely freaks out and I > cannot hold her hands and try to pry her eyes open at the same time. I think > I wasted half a bottle that ended up on her face. She's kicking and > thrashing --- total nightmare. Any suggestions? I don't know if they'll do > the eye drops at school for her, or given the experience I just had, how > they'll be able to. I don't know what to do. Also, I've now just read the > email about the little girl losing sight in her eye. Completely? And it's > reversible with eye surgery? I know only the very basics about this > condition. I'm very upset. For those of you whose children have developed > iritis/uveitis, once a child is diagnosed with this, is it a chronic > condition like the jra, or can kids have a bout with it and then it's gone? > > Diane (, 2, pauci) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Val, I can just picture it!! That would work. What we have to go through . Thankfully, has now accepted she has to get this done. She's fine for the pred-forte, but we still cries and covers her eyes a little for the cyclogyl. It stings. She does like to have some sense of control, so she gets to pick which eye we do first and she will not allow the drops unless she's holding a Kleenex so she can "tap, tap, tap" any excess moisture. It's now part of the routine. Thanks for the input though. Hope all is well with Rob. Diane (, 2, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Thanks - glad to hear she is doing so well with it! Val In a message dated Fri, 15 Feb 2002 11:50:48 AM Eastern Standard Time, dbornscheu@... writes: > > > Val, > > > > I can just picture it!! That would work. What we have to go through . Thankfully, has now accepted she has to get this done. She's fine for the pred-forte, but we still cries and covers her eyes a little for the cyclogyl. It stings. She does like to have some sense of control, so she gets to pick which eye we do first and she will not allow the drops unless she's holding a Kleenex so she can " tap, tap, tap " any excess moisture. It's now part of the routine. Thanks for the input though. Hope all is well with Rob. > > > > Diane (, 2, pauci) > > > > <!-- |**|begin egp html banner|**| --> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Dear Diane, I am curious how many appts had with the eye doctor before the uveitis showed up.....my son is 22 mos, pauci ana pos and has had 3 appts. so far all negative for his eyes, and they said the chances decrease with each one. is on naproxen 2x a day and had jt. injections last august in his knee and ankle, so far so good....but we fear the day if wears off. thanks... (Will, 22 mos. pauci) Quote Link to comment Share on other sites More sharing options...
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