Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 Hi all, Zhondrese is in the hospital due to seizure activity and trying to get meds under control too. She has seizures while she's sleeping and the doctors don't what's causing this too happen. Hope everyone has a Blessed Thanksgiving. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 Ywellen, I hope Zhondrese will get better soon. I'm sure its hard just not knowing what's causing the problem, but hopefully you'll get some answers soon, leading to a speedy recovery You all will be in our thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 Ywellen, We will be praying for Zhondrese tonight. Our heart goes out to you. [ & Skyler] Re: Hi all, Zhondrese is in the hospital due to seizure activity and trying to get meds under control too. She has seizures while she's sleeping and the doctors don't what's causing this too happen. Hope everyone has a Blessed Thanksgiving. Ywellen eGroups Sponsor For links to websites with JRA info please visit: http://www.geocities.com/Heartland/Village/8414/Links.html To manage your subscription settings, visit: subscribe/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 Ywellen, Sorry to hear about Zhondrese being in the hospital. I hope they are able to get the seizures under control soon. Will keep you in our prayers. Keep us posted. Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2000 Report Share Posted November 22, 2000 Ywellen, Hope they figure out why she's seizing. I know how scared you must be. I'll keep you in my thoughts. kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2000 Report Share Posted November 24, 2000 Ywellen I hope that she is OK Good Luck. SHU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2000 Report Share Posted November 25, 2000 Hi Ywellen, Good to hear that things are beginning to settle down some, again. I hope Zhondrese is feeling okay. Must have been a scary experience for the family. I hope she'll continue to do well, even without the seizure meds. Aloha, Georgina sweetpea200001@... wrote: > > Hi all we are hoe from the hospital and Drese is doing fine.Her seizures are > now under control. It's weird how she has seizure, because she have them > while she's sleep and doesn't even make a noise nor movement. They took her > off some of her seizure meds to see how she does. Thanks all for your concern > and prayers. > Ywellen/ Zhondrese Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2000 Report Share Posted November 25, 2000 Hi all we are hoe from the hospital and Drese is doing fine.Her seizures are now under control. It's weird how she has seizure, because she have them while she's sleep and doesn't even make a noise nor movement. They took her off some of her seizure meds to see how she does. Thanks all for your concern and prayers. Ywellen/ Zhondrese Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2000 Report Share Posted November 25, 2000 Thanks for the update Ywellen. Glad to hear that Zhondrese is doing better. Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Bonny the adult rhuemys i have talked with tell me they dont see kids and we only have 2 ped rhuemys here in ga and i have been to both of them with melissa i have talked with the ga chapter about this and they are trying to get more drs into going into ped rhuemys theres some states who dont have ANY ped rhuemys this is something we as parents need to stress to our state or medical association now my sisters doctor told me he would start seeing melissa for all her ailments hes a old doctor and very good the older doctors have been through it and know alot more than the younger ones Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Dear Sharon, thanks for your reply about Meghan and her height. has been on steroids since age 6. it has usually 12 mg or above until a year ago...when they did a bone scan a few months ago they said his physical age was 6 yrs old although his chronological age is 10 yr, its almost like development stopped at age 6. The development of his teeth, according to our Dentist, are also delayed...he still has many baby teeth compared to an average 10 yr old..he also has some white spots on his front teeth that the Dentist feels was due to high fevers he had with the systemic JRA. I wonder if height is most affected in children with JRA compared to poly Jra.?? or if all correalates with time spent on steroids ?? Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Hi, Most of the JIA kids suffer stunted growth which can also cause problems with their teeth. My son Damien (systemic since 9 months old) is 6 now and very small for his age. Stopping prednisolone for a year or so had little effect on this so I would suggest that the steriods are not necessarily to blame for 's short stature - blame the JIA. Damien's adult teeth are coming through now and I'm dreading any necessary dental work. Meghann would appear to be an exception - I'm sure many of us would give anything for our children to grow normally. Regards, Oliver Re: Dear Sharon, thanks for your reply about Meghan and her height. has been on steroids since age 6. it has usually 12 mg or above until a year ago...when they did a bone scan a few months ago they said his physical age was 6 yrs old although his chronological age is 10 yr, its almost like development stopped at age 6. The development of his teeth, according to our Dentist, are also delayed...he still has many baby teeth compared to an average 10 yr old..he also has some white spots on his front teeth that the Dentist feels was due to high fevers he had with the systemic JRA. I wonder if height is most affected in children with JRA compared to poly Jra.?? or if all correalates with time spent on steroids ?? Jane To manage your subscription settings, please visit: For links to websites about JRA: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2001 Report Share Posted March 10, 2001 Hi Jane, I'm not 100% sure about this, but I think your observation is right on target. Seems to me like it's usually children with systemic JRA who have delayed/stunted growth issues. Then again, they seem to be the only ones treated for extended periods of time with steroids. Take care, Georgina Re: Dear Sharon, thanks for your reply about Meghan and her height. has been on steroids since age 6. it has usually 12 mg or above until a year ago...when they did a bone scan a few months ago they said his physical age was 6 yrs old although his chronological age is 10 yr, its almost like development stopped at age 6. The development of his teeth, according to our Dentist, are also delayed...he still has many baby teeth compared to an average 10 yr old..he also has some white spots on his front teeth that the Dentist feels was due to high fevers he had with the systemic JRA. I wonder if height is most affected in children with JRA compared to poly Jra.?? or if all correalates with time spent on steroids ?? Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2001 Report Share Posted March 10, 2001 Hi Oliver, Yes, I've heard the same thing. That even when off the steroids completely for a period, growth is still slow to occur in many children. Not sure if you saw it or not but I recently posted an article explaining that a combination therapy of indomethacin and hydroxychloroquine (Plaquinel), in a rodent model, produced stunted growth patterns. My son takes both of those meds. Not sure if that has contributed but it may have. As well as the steroids. So the inherent inflammatory process of JRA itself may be responsible or it may be due to side effects on a child's developing body of some of the many drugs used to treat it. Normal growth used to be something that we just took for granted and never hardly thought about ... until the phrase short-stature came up when we had our first meeting with an endocrinologist. Now it's become a part of our vocabulary. Oh, that just reminded me. Was watching Politically Incorrect with Bill Mahr on TV last night and one of the guests was a former Dept. of Labor Exec. Wish I could remember his name. He is of very short stature. Joked that all of his children are taller than him already. He's written a book called, Short People. I'm going to look for it. Oliver, don't worry yourself too much (yet) with the prospect of Damien needing to have lots of corrective dental work. It may all work out. hasn't had any trouble with his permanent teeth coming in awkwardly. That was something I was very concerned about when he started losing his primary teeth. If he was having slowed growth, where and how would all those larger teeth fit in? He also has not had any staining/white spots. He has very beautiful, and apparently quite strong, teeth. Lucky, I guess. Just earlier this week I attended a dental health alliance meeting. We (and many others) have had some difficulty securing a dentist willing to accept his medicaid dental coverage. The conclusion reached is that, at least for the time being, we and others in the same predicament (children eligible for Medicaid) will have to fly off of our island, across the ocean, and over to the big city ~Honolulu~ in order to be examined or treated by a dentist. If had more pressing dental health needs, associated with his JRA or not, that would be a major complication for us. Hopefully we'll be able to make some needed changes in the dental health delivery system that's currently in place here, so that access to services will be easier to come by for those children who need it. Take care, Georgina Hi, Most of the JIA kids suffer stunted growth which can also cause problems with their teeth. My son Damien (systemic since 9 months old) is 6 now and very small for his age. Stopping prednisolone for a year or so had little effect on this so I would suggest that the steriods are not necessarily to blame for 's short stature - blame the JIA. Damien's adult teeth are coming through now and I'm dreading any necessary dental work. Meghann would appear to be an exception - I'm sure many of us would give anything for our children to grow normally. Regards, Oliver Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2001 Report Share Posted March 11, 2001 Georgina, Thanks for the details. Damien only took hydroyychloroquine for a very short while and it had no apparent effect on the JIA so it was discontinued a long time ago. I'm glad that Josh's teeth are fine although the thought of a flight just to go to the Dentists seems rather inconvenient to put it mildly. Damien has been to our normal dentist once and when he saw the instruments he freaked out completely! I believe that the hospital will be dealing with his teeth from now on. We recently had a winter holiday in the Canary Islands (just off the coast of Morocco) and Damien was in fine form. I was amazed to see him on the beach running around in the surf all day long, building castles and making friends. Tired me out just watching him! Just goes to show that the disease can be controlled and we can all lead a more normal life. Hope all are well, Oliver Re: Hi Oliver, Yes, I've heard the same thing. That even when off the steroids completely for a period, growth is still slow to occur in many children. Not sure if you saw it or not but I recently posted an article explaining that a combination therapy of indomethacin and hydroxychloroquine (Plaquinel), in a rodent model, produced stunted growth patterns. My son takes both of those meds. Not sure if that has contributed but it may have. As well as the steroids. So the inherent inflammatory process of JRA itself may be responsible or it may be due to side effects on a child's developing body of some of the many drugs used to treat it. Normal growth used to be something that we just took for granted and never hardly thought about ... until the phrase short-stature came up when we had our first meeting with an endocrinologist. Now it's become a part of our vocabulary. Oh, that just reminded me. Was watching Politically Incorrect with Bill Mahr on TV last night and one of the guests was a former Dept. of Labor Exec. Wish I could remember his name. He is of very short stature. Joked that all of his children are taller than him already. He's written a book called, Short People. I'm going to look for it. Oliver, don't worry yourself too much (yet) with the prospect of Damien needing to have lots of corrective dental work. It may all work out. hasn't had any trouble with his permanent teeth coming in awkwardly. That was something I was very concerned about when he started losing his primary teeth. If he was having slowed growth, where and how would all those larger teeth fit in? He also has not had any staining/white spots. He has very beautiful, and apparently quite strong, teeth. Lucky, I guess. Just earlier this week I attended a dental health alliance meeting. We (and many others) have had some difficulty securing a dentist willing to accept his medicaid dental coverage. The conclusion reached is that, at least for the time being, we and others in the same predicament (children eligible for Medicaid) will have to fly off of our island, across the ocean, and over to the big city ~Honolulu~ in order to be examined or treated by a dentist. If had more pressing dental health needs, associated with his JRA or not, that would be a major complication for us. Hopefully we'll be able to make some needed changes in the dental health delivery system that's currently in place here, so that access to services will be easier to come by for those children who need it. Take care, Georgina Hi, Most of the JIA kids suffer stunted growth which can also cause problems with their teeth. My son Damien (systemic since 9 months old) is 6 now and very small for his age. Stopping prednisolone for a year or so had little effect on this so I would suggest that the steriods are not necessarily to blame for 's short stature - blame the JIA. Damien's adult teeth are coming through now and I'm dreading any necessary dental work. Meghann would appear to be an exception - I'm sure many of us would give anything for our children to grow normally. Regards, Oliver Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2001 Report Share Posted March 11, 2001 On the steriod issue, I read an article, was it here? It said it took ~ 2 years to get growth back after stopping Prednisone. It also said that girls usually get 100% back, boys only 80%. Kind of odd, I will try to find the article. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2001 Report Share Posted March 12, 2001 Hello Georgina, In reading your response to Oliver you had mentioned that your son did not have any " staining/white spots on his teeth " . Does that have anything to do with JRA? I ask that because 's two front teeth are that way and the Dentist just said " sometimes that happens to kids " . At that time was not diagnosed with JRA in fact showed no signs (about a year ago). Just curious... Dee Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Hi Jana, I don't recall reading that. If you do find the article, please do post it for us. You know I'm always interested in reading about the effects of and issues regarding children needing long-term prednisone therapy. I'm sure many of us are. Very interesting. Personally, I don't think I am in contact with anyone whose child has the systemic form of JRA and who needed to take prednisone for an extended period of time and who has managed to be off/stay off steroids for a period of two years. Anybody like that here? Thanks, Georgina On the steriod issue, I read an article, was it here? It said it took ~ 2 years to get growth back after stopping Prednisone. It also said that girls usually get 100% back, boys only 80%. Kind of odd, I will try to find the article. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Hi Dee Dee, I've heard some other parents talk about this kind of tooth staining, in their children with JRA. I think it's commonly a result of meds or fevers. Or, like others have said, maybe it's totally unrelated and some are just more susceptible to it? Not sure. Sorry : ( Aloha, Georgina Hello Georgina, In reading your response to Oliver you had mentioned that your son did not have any " staining/white spots on his teeth " . Does that have anything to do with JRA? I ask that because 's two front teeth are that way and the Dentist just said " sometimes that happens to kids " . At that time was not diagnosed with JRA in fact showed no signs (about a year ago). Just curious... Dee Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2001 Report Share Posted April 6, 2001 I think it is a great idea! Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 To all those who say they have side affects from methotrexate what doses are you on? I'm currently having 15mg injections every Friday and dont seem to notice any particular side affects. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Vicki, My daughter is on 25 mg sub-cutaneous once a week. Since switching from the oral dose, the only side effects she notices are a bad aftertaste (go figure) and still occasional stomach pain. However the pain is nothing like she had with the oral doses. FYI she is also on 200 mg celebrex, folic acid, and prednisone. The prednisone is dropping and currently is 12.5/7.5 every other day. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2001 Report Share Posted April 18, 2001 Thanks for replying Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 Hi Amy, We have used the parrafin treatments on Holly's hand and she loves them, i had a homemade one at home, is was kind of a pain, but now you can buy them anywhere. TTYL AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Hi It is unlikely, though not impossible, that the fever was a reaction to the methotrexate. I would think it more likely was caused by a virus. At the same time, I'd certainly call the doctor and let him have some input. My daughter, now 9, has been on methotrexate for more than 6 years now. The most frequent problem we had was nausea and vomiting, now a non-issue as we switched to injections over a year ago. We have also had trouble with elevated liver enzymes a few times. Once it was bad enough that we had to pull her off methotrexate for a few weeks--- awful for her, as it meant going on steroids again in order to walk. The other times we have just lowered the methotrexate dose and things have returned to normal. Regular lab work is required for kids on methotrexate, as that is how you monitor for some of the side effects. When 's enzymes begin to climb we go to more frequent labs. You nephew's rheumatologist will advise his parents on the frequency blood work is to be done. Your nephew is lucky to have such a caring aunt! Liz > hi, my name is , I am the aunt of a 9yr old boy with JRA. I have > emailed the forum before..... > I am writing today to get information from family members of children with > JRA who have been on Methotrexate.....My nephew was just put on this > medication this week. He had his first dose yesterday morning. Last night my > sister had to take him to the hospital because his fever spiked to 104+, he > said his chest hurt and couldn't breath right, and his whole body ached to > the point where he wouldn't let anyone touch him because he hurt so much, he > complained about his back the most which hasn't happened before. > Does anyone have any information about the side affects of this medication > or has anyone experienced this before. Are there any major concerns we > should have? Anything will be helpful......Thank you for all your help > > A very concerned aunt, > > > > L. s > SQA Project Coordinator > jstevens@... <mailto:jstevens@...> > > > Softricity, Inc. > 332 Congress Street > Boston, MA 02210 > ph 617.695.0336 x137 > fx 617.338.7769 > www.softricity.com <http://www.softricity.com/> - Powering Software as a > Service > > > To manage your subscription settings, please visit: > > > For links to websites about JRA: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
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