Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 My daughter, , has systemic and was diagnosed at age 3 yrs. old (she's now 7). Prior to the first visit to the ped. rheum. my husband and I educated ourselves on the disease and the medications used for this disease. Naturally, was started on the naprosyn and then graduated thru many hard times to MTX. When we confronted her ped. rheum. about steroids he " refused " putting her on any and at that time the disease was very out of control. He explained the side effects of steroids were not good and he dosen't agree with them-at not least where was concerned. I trusted our doctor's judgement even if I didn't agree. Still, I'm not sure why he refused to put her on them. What are steroids used for? She has been on MTX for several years now and will hopefully be coming off in 4/2002. This has been the only drug that she has been on to conquer this disease and celebrex for the inflammation (after trying MANY other meds.). I know this is a crazy question to be asking, but I've been reading many questions and concerns that you all have about growth/steroids-it has made me think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 Hi : I'm no expert, but i know one of the big concerns many of the doctors have with using steroids is that it is SOOO hard to get kids (anyone) off of them. They replace - or make up for a lack of - a naturally occuring substance in the body. Once the body gets used to an outside supply of steroids, the harder it is to get the body to start producing it on its own. It's a simple name, but I have a raging headache today and for the life of me can't call it up to mind. Cortisol! It's something called Cortisol (I think). Then there are all the side effects. Stunted growth being one, at higher doses. Cushings syndrome ( a swelling of the face, " moon-face " ), abnormal hair growth on the body - Mickey has a lot of hair on her back, and her neck - uh, there are lots of others. BUT - I know they felt they had no choice about putting Mickey on it. She'd had the high fevers and rash for almost a year before they finally diagnosed her with arthritis and her sed rates were REALLY high, lots of extreme inflammation. She was terribly anemic, and that was apparently a big worry to the doctors at the time. The steroids helped get a lot of the symptoms under control. But if you can control the symptoms of the arthritis without it - that's really preferable. It's so hard to get them off of the steroids. Hope this helped. Lynn Mother of Mickey, 7, systemic, diagnosed at 3. From: KAmitchemalways@... Reply- Date: Tue, 1 May 2001 09:51:27 EDT Jra-list Subject: A Question About Steroids My daughter, , has systemic and was diagnosed at age 3 yrs. old (she's now 7). Prior to the first visit to the ped. rheum. my husband and I educated ourselves on the disease and the medications used for this disease. Naturally, was started on the naprosyn and then graduated thru many hard times to MTX. When we confronted her ped. rheum. about steroids he " refused " putting her on any and at that time the disease was very out of control. He explained the side effects of steroids were not good and he dosen't agree with them-at not least where was concerned. I trusted our doctor's judgement even if I didn't agree. Still, I'm not sure why he refused to put her on them. What are steroids used for? She has been on MTX for several years now and will hopefully be coming off in 4/2002. This has been the only drug that she has been on to conquer this disease and celebrex for the inflammation (after trying MANY other meds.). I know this is a crazy question to be asking, but I've been reading many questions and concerns that you all have about growth/steroids-it has made me think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 , Steroids are one of the worst drugs for long term side affects. It is not uncommon for those on Steroids for over 6 months to develope Diabetese or Avascular Necrosis (death of smaller blood vessels) later. These drugs also cause emotional rollercoaster, stunted growth and " Cushingoid " appearance (weight gain in the face, tummy and at the base of the neck). There are many other negative side affects. However, when a particular case becomes very very bad there is currently nothing that works so fast to controll the pain, fever and inflamation. Most Arthritis sufferers are on Steroids at some time in their life and ALL are trying to get 'weaned' off them for the reasons listed above. ~ A Question About Steroids My daughter, , has systemic and was diagnosed at age 3 yrs. old (she's now 7). Prior to the first visit to the ped. rheum. my husband and I educated ourselves on the disease and the medications used for this disease. Naturally, was started on the naprosyn and then graduated thru many hard times to MTX. When we confronted her ped. rheum. about steroids he " refused " putting her on any and at that time the disease was very out of control. He explained the side effects of steroids were not good and he dosen't agree with them-at not least where was concerned. I trusted our doctor's judgement even if I didn't agree. Still, I'm not sure why he refused to put her on them. What are steroids used for? She has been on MTX for several years now and will hopefully be coming off in 4/2002. This has been the only drug that she has been on to conquer this disease and celebrex for the inflammation (after trying MANY other meds.). I know this is a crazy question to be asking, but I've been reading many questions and concerns that you all have about growth/steroids-it has made me think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 from my point of view and my experience with steroids i dont like it but if it came down to it i would have no choice also the dr is probably trying to use it as a last resource melissas dr would put my son on the steroids for his asthma and has put melissa on it for a week for her asthma the side effects sometimes out weigh the giveing it or takeing it is very much needed because of this JRA i know the inhaler steroids gives a coat on the lungs to help with inflammation asthmatics get and it takes up to 2 weeks to help the pills work faster and are given 5 pills for first day 4 for the 2nd day 3 for the 3rd day 2 for the 4th day then 1 for the 5th day each pill is 20mgs so your looking at 100mgs then down to none but with treating JRA its in some cases is different the dr also looks at family history on steroids treatment but if the dr sees its a resource for now i would still ask him questions about it i dont know much on MTX but some in the group do and some know more about the steroids than me in the group hope i helped someway Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 Hi : I was wondering where you go the 6 month time line for the steroid/diabetes link? This scares the s*** out of me, as mickey has been on reasonably high doses for going on 4 years now. I'm sure the docs must have mentioned these complications/risks on various occasions - I wonder if I block out remembering or thinking about it too much because at this point they can find nothing else that controls her symptoms. And they always seem to emphasize what will/could happen if we take her off them. The anemia was particularly threatening. Sometimes this is all pretty overwhelming. Not one of my good days for looking on the bright side, she has been up sick most of the night with the flu. Not even sleep to summon up optimism today. I need to compile a list of all my concerns, all these side effects to question the docs about May 22. Thanks for the info, Lynn From: " V. " <chivalry@...> Reply- Date: Tue, 1 May 2001 11:01:31 -0700 < > Subject: Re: A Question About Steroids , Steroids are one of the worst drugs for long term side affects. It is not uncommon for those on Steroids for over 6 months to develope Diabetese or Avascular Necrosis (death of smaller blood vessels) later. These drugs also cause emotional rollercoaster, stunted growth and " Cushingoid " appearance (weight gain in the face, tummy and at the base of the neck). There are many other negative side affects. However, when a particular case becomes very very bad there is currently nothing that works so fast to controll the pain, fever and inflamation. Most Arthritis sufferers are on Steroids at some time in their life and ALL are trying to get 'weaned' off them for the reasons listed above. ~ A Question About Steroids My daughter, , has systemic and was diagnosed at age 3 yrs. old (she's now 7). Prior to the first visit to the ped. rheum. my husband and I educated ourselves on the disease and the medications used for this disease. Naturally, was started on the naprosyn and then graduated thru many hard times to MTX. When we confronted her ped. rheum. about steroids he " refused " putting her on any and at that time the disease was very out of control. He explained the side effects of steroids were not good and he dosen't agree with them-at not least where was concerned. I trusted our doctor's judgement even if I didn't agree. Still, I'm not sure why he refused to put her on them. What are steroids used for? She has been on MTX for several years now and will hopefully be coming off in 4/2002. This has been the only drug that she has been on to conquer this disease and celebrex for the inflammation (after trying MANY other meds.). I know this is a crazy question to be asking, but I've been reading many questions and concerns that you all have about growth/steroids-it has made me think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 , I have a love hate relationship with steroids. My daughter Abbie (11, systemic) was diagnosed in Feb. 2000. She has been on steroids since getting sick in October 1999. She has suffered many side effects, such as mood swings ('roid rage), weight gain, inability to sleep, round face. . .the list could go on and on. But she has been on some pretty high doses, up to 50 mg/day at times. Not to mention the pulse doses given by iv in the hospital. The positive side is that in the beginning the steroids were the only thing that got her out of bed. She spent 5 weeks in bed before anything worked, including aspirin therapy (4000 mg/day worked for 3 days). However, if we had it all to do over again, I think (now that I am more educated about this disease) that I would have pushed for other treatments first. She is currently working down (12.5 and 7.5 mg/day every other day). She has never been below 5mg, so we are getting close. She is also on 25 mg mtx injections once a week, 100 mg celebrex twice daily, and folic acid. We are currently discussing enbrel with her doctor. He is concerned that if she has another flare, either that or remicaide are our choices. And the enbrel might be hard to come by. But I am hearing so much through this group about other options. Our greatest concern with Abbie right now is not joint stiffness, so much as rash. The mtx seems to take care of everything but that. Does anyone have any suggestions? Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 Scares me too Lynn as Skyler has been on it for a year and a half. I gleaned this information after compiling a series of reports from Georginas database in the last year for the court case we were to go through. I have been reminded that it is not a guarantee, but rather an increased possibility that these side affects can occur. We need to be informed, but not let fear rule us on things like this. What you can do is press them for a more effective and less dangerous long term medicine, hoping to reduce the pred to bare minimum. We are finally down to just 4 mg daily and he is now starting to grow again and has lost the steroid moon face and tummy bloating. We went through extreemly bad anemia, to the point that his body was unable to produce hemoglobin and was depleating what he did have. We were down to dangerous levels and had to go on ferrous sulfate in strong doses. We got back to proper levels but he is dropping again and we need to restart the ferrous sulfate. Keep your head up Lynn and know you are a wonderful parent. It takes a special parent to care for a special child. Vent all you need. lord knows I have shed more tears than I can recall here on the list. Our prayers go out to you. & Skyler A Question About Steroids My daughter, , has systemic and was diagnosed at age 3 yrs. old (she's now 7). Prior to the first visit to the ped. rheum. my husband and I educated ourselves on the disease and the medications used for this disease. Naturally, was started on the naprosyn and then graduated thru many hard times to MTX. When we confronted her ped. rheum. about steroids he " refused " putting her on any and at that time the disease was very out of control. He explained the side effects of steroids were not good and he dosen't agree with them-at not least where was concerned. I trusted our doctor's judgement even if I didn't agree. Still, I'm not sure why he refused to put her on them. What are steroids used for? She has been on MTX for several years now and will hopefully be coming off in 4/2002. This has been the only drug that she has been on to conquer this disease and celebrex for the inflammation (after trying MANY other meds.). I know this is a crazy question to be asking, but I've been reading many questions and concerns that you all have about growth/steroids-it has made me think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 Dear and all on the JRA list, I have been a " silent " member lately as we are now back to the undiagnosed stage. Right now it is being tossed back and forth between Systemic JRA, or a new periodic fever syndrome. After 4-1/2 years, I feel like we are at the same point we were when we started. Anyway, , you made an interesting comment about steroids. Kelli's fevers get to 107+ all the time, but only come every 3 weeks. She also gets a myriad of other symptoms that come and go. The " ONLY " effective treatment for her that anyone in this whole US has found is steroids. The good thing about her case is that I only have to give her one dose every 3 weeks (the real bad fevers hit every 21 days like clockwork). The down side to it is that I have to give her a 40 mg dose when the fever gets above 104. Without the steroids, she goes to and stays at 107+ and not even alternating Motrin and Tylenol will bring it down, they both have become ineffective. I have asked on another board, but no one there had experienced it, but you made mention of the " moon face " and " stomach bloat " . I have noticed that after the last dose (18 days ago) she has had a chronic distended belly. She looks like one of the (pardon the pun) " starving African children " with their poor belly pooched out so far. She even has a hard time bending over. We have taken her to the doc, but he says it is not a " surgical " belly. Should I be really concerned about this? She is still have normal bowel movements and when he suggested Milk of Mag, it made her stools like sand (sorry to be so graphic but this has been bugging me). I know that for her weight, 40 mg is the max dose for her system so I don't know what to do at this point. Does anyone else experience this??? Sorry to ramble but you are all an inspiration to me and I at least can cope better with our 4-1/2 years and no diagnosis after reading all of your wonderful posts. Thanks!!! Angie Re: A Question About Steroids >Scares me too Lynn as Skyler has been on it for a year and a half. >I gleaned this information after compiling a series of reports from Georginas database in the last year for the court case we were to go through. I have been reminded that it is not a guarantee, but rather an increased possibility that these side affects can occur. >We need to be informed, but not let fear rule us on things like this. >What you can do is press them for a more effective and less dangerous long term medicine, hoping to reduce the pred to bare minimum. We are finally down to just 4 mg daily and he is now starting to grow again and has lost the steroid moon face and tummy bloating. >We went through extreemly bad anemia, to the point that his body was unable to produce hemoglobin and was depleating what he did have. We were down to dangerous levels and had to go on ferrous sulfate in strong doses. We got back to proper levels but he is dropping again and we need to restart the ferrous sulfate. > >Keep your head up Lynn and know you are a wonderful parent. It takes a special parent to care for a special child. Vent all you need. lord knows I have shed more tears than I can recall here on the list. >Our prayers go out to you. > & Skyler > A Question About Steroids > > > My daughter, , has systemic and was diagnosed at age 3 yrs. old > (she's > now 7). Prior to the first visit to the ped. rheum. my husband and I > educated ourselves on the disease and the medications used for this > disease. > Naturally, was started on the naprosyn and then graduated thru many > hard times to MTX. When we confronted her ped. rheum. about steroids he > " refused " putting her on any and at that time the disease was very out of > control. He explained the side effects of steroids were not good and he > dosen't agree with them-at not least where was concerned. I trusted > our doctor's judgement even if I didn't agree. Still, I'm not sure why he > refused to put her on them. What are steroids used for? > She has been on MTX for several years now and will hopefully be coming off > in > 4/2002. This has been the only drug that she has been on to conquer this > disease and celebrex for the inflammation (after trying MANY other meds.). > I know this is a crazy question to be asking, but I've been reading many > questions and concerns that you all have about growth/steroids-it has made > me > think. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 Angie, Regarding the poochie tummy ~ if there is no medical problem with her - such as constipation, inflamed liver/kidneys/etc. or problematic water retention, then it is probably just the side effects of the pred. Skyler was the same for a time and it was a concern for us due to the odd appearance. But as we have lowered the dosage for extended time, the " cushingoid " appearance (as the Dr's call it) has substantially subsided. His tummy is normal again. I hope this is all you are seeing and I am certain the Dr's are correct on this. ~ { & Skyler] A Question About Steroids > > > My daughter, , has systemic and was diagnosed at age 3 yrs. old > (she's > now 7). Prior to the first visit to the ped. rheum. my husband and I > educated ourselves on the disease and the medications used for this > disease. > Naturally, was started on the naprosyn and then graduated thru many > hard times to MTX. When we confronted her ped. rheum. about steroids he > " refused " putting her on any and at that time the disease was very out of > control. He explained the side effects of steroids were not good and he > dosen't agree with them-at not least where was concerned. I trusted > our doctor's judgement even if I didn't agree. Still, I'm not sure why he > refused to put her on them. What are steroids used for? > She has been on MTX for several years now and will hopefully be coming off > in > 4/2002. This has been the only drug that she has been on to conquer this > disease and celebrex for the inflammation (after trying MANY other meds.). > I know this is a crazy question to be asking, but I've been reading many > questions and concerns that you all have about growth/steroids-it has made > me > think. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Christy, Thanks for the insight on steroids. One other question, why is the embrel hard to come by? I've seen many comments about the embrel having a shortage or something of that nature. My daughter was suppose to be put on it, but the doctor changed his mind before we could make the drive back home (5 hrs. to her doctors office). Now we have a " very expensive " drug just sitting in our fridge and we don't know whether to dispose of it, or keep it for that " just in case " . Oh well..... Once again, thanks for helping me to understand. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 Angie, Chrissy also experiences alot of the stuff in your letter. Can I ask how old kelly is. Chrissy is twelve and her symptoms seem to break through every 3 weeks like clockwork. Then they do an IV pulse on her. She started this flare January 8th and is becoming resistant to all the meds. We are climbing the ladder quickly. January 7th Chrissy started her first menstration, with the 21 day breakthroughs I can't help but wonder if it is related to her cycle. I was just curious about . I am going to start a journal (something I suggest every parent do from the beginning,) and try to see if there is a connection. I wish I would have started it from the onset of the disease. Chrissy is also showing the moon face and the chubby tummy, not to mention the black hair all over from the steroids. She seems to really swell up after the IV pulses. Just wanted you to know you are not alone, and I am interested in knowing your daughters age suzie --- Angie <atm87@...> wrote: > Dear and all on the JRA list, > > I have been a " silent " member lately as we are now > back to the undiagnosed > stage. Right now it is being tossed back and forth > between Systemic JRA, > or a new periodic fever syndrome. After 4-1/2 > years, I feel like we > are at the same point we were when we started. > Anyway, , you made an > interesting comment about steroids. > > Kelli's fevers get to 107+ all the time, but only > come every 3 weeks. She > also gets a myriad of other symptoms that come and > go. The " ONLY " effective > treatment for her that anyone in this whole US has > found is steroids. The > good thing about her case is that I only have to > give her one dose every 3 > weeks (the real bad fevers hit every 21 days like > clockwork). The down side > to it is that I have to give her a 40 mg dose when > the fever gets above 104. > Without the steroids, she goes to and stays at 107+ > and not even alternating > Motrin and Tylenol will bring it down, they both > have become ineffective. > > I have asked on another board, but no one there had > experienced it, but you > made mention of the " moon face " and " stomach bloat " . > I have noticed that > after the last dose (18 days ago) she has had a > chronic distended belly. > She looks like one of the (pardon the pun) " starving > African children " with > their poor belly pooched out so far. She even has a > hard time bending over. > We have taken her to the doc, but he says it is not > a " surgical " belly. > Should I be really concerned about this? She is > still have normal bowel > movements and when he suggested Milk of Mag, it > made her stools like sand > (sorry to be so graphic but this has been bugging > me). I know that for her > weight, 40 mg is the max dose for her system so I > don't know what to do at > this point. Does anyone else experience this??? > > Sorry to ramble but you are all an inspiration to me > and I at least can cope > better with our 4-1/2 years and no diagnosis after > reading all of your > wonderful posts. > > Thanks!!! > > Angie > Re: A Question About Steroids > > > >Scares me too Lynn as Skyler has been on it for a > year and a half. > >I gleaned this information after compiling a series > of reports from > Georginas database in the last year for the court > case we were to go > through. I have been reminded that it is not a > guarantee, but rather an > increased possibility that these side affects can > occur. > >We need to be informed, but not let fear rule us on > things like this. > >What you can do is press them for a more effective > and less dangerous long > term medicine, hoping to reduce the pred to bare > minimum. We are finally > down to just 4 mg daily and he is now starting to > grow again and has lost > the steroid moon face and tummy bloating. > >We went through extreemly bad anemia, to the point > that his body was unable > to produce hemoglobin and was depleating what he did > have. We were down to > dangerous levels and had to go on ferrous sulfate in > strong doses. We got > back to proper levels but he is dropping again and > we need to restart the > ferrous sulfate. > > > >Keep your head up Lynn and know you are a wonderful > parent. It takes a > special parent to care for a special child. Vent > all you need. lord knows > I have shed more tears than I can recall here on the > list. > >Our prayers go out to you. > > & Skyler > > A Question About Steroids > > > > > > My daughter, , has systemic and was > diagnosed at age 3 yrs. old > > (she's > > now 7). Prior to the first visit to the ped. > rheum. my husband and I > > educated ourselves on the disease and the > medications used for this > > disease. > > Naturally, was started on the naprosyn and > then graduated thru > many > > hard times to MTX. When we confronted her ped. > rheum. about steroids he > > " refused " putting her on any and at that time > the === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2001 Report Share Posted May 5, 2001 Suzie, Kelli will be 5 in August and we have been keeping a journal since this whole thing started (December 4, 1996). We did have a GI doctor once tell us that he had a theory (though never medically proven according to him) that even though the girls are young, they still have cycles of hormones even at a very early age. We too have often wondered if it wasn't all somehow related. We are at Day 21 right now and all the signs are there, the fever just has not hit yet. I guess we will just be anxiously waiting. E-mail me anytime if you want to " talk " . Angie Re: A Question About Steroids >> >> >> >Scares me too Lynn as Skyler has been on it for a >> year and a half. >> >I gleaned this information after compiling a series >> of reports from >> Georginas database in the last year for the court >> case we were to go >> through. I have been reminded that it is not a >> guarantee, but rather an >> increased possibility that these side affects can >> occur. >> >We need to be informed, but not let fear rule us on >> things like this. >> >What you can do is press them for a more effective >> and less dangerous long >> term medicine, hoping to reduce the pred to bare >> minimum. We are finally >> down to just 4 mg daily and he is now starting to >> grow again and has lost >> the steroid moon face and tummy bloating. >> >We went through extreemly bad anemia, to the point >> that his body was unable >> to produce hemoglobin and was depleating what he did >> have. We were down to >> dangerous levels and had to go on ferrous sulfate in >> strong doses. We got >> back to proper levels but he is dropping again and >> we need to restart the >> ferrous sulfate. >> > >> >Keep your head up Lynn and know you are a wonderful >> parent. It takes a >> special parent to care for a special child. Vent >> all you need. lord knows >> I have shed more tears than I can recall here on the >> list. >> >Our prayers go out to you. >> > & Skyler >> > A Question About Steroids >> > >> > >> > My daughter, , has systemic and was >> diagnosed at age 3 yrs. old >> > (she's >> > now 7). Prior to the first visit to the ped. >> rheum. my husband and I >> > educated ourselves on the disease and the >> medications used for this >> > disease. >> > Naturally, was started on the naprosyn and >> then graduated thru >> many >> > hard times to MTX. When we confronted her ped. >> rheum. about steroids he >> > " refused " putting her on any and at that time >> the >=== message truncated === > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Hi Angie, Well Holly and like to do the same things still i guess. Holly's belly is the same, she has been on every other day steroids since september, her longest time ever i think. WE have been trying to taper cause she has had such a big weight gain, she has gained like 10 lbs since september. Anyway, her belly looks like kelly's very distended, she has a really hard time finding clothes to fit, if they fit her belly, they are about a mile too long. Thank goodness its summer, hopefully we will have better luck with shorts. She tends to where them kind of around her hips. She has never liked anything tight around her belly, i think its because her spleen has always been big. I will try and find some pictures and email them to you, so you can see the difference between last summer and this summer. Things have to get easier for you sometime soon hon, i will be praying for you and kelly and family :-) Email me anytime, i miss you so much!!!! Aj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Hi AJ, We have always said that Holly and Kelli do sound a lot alike. I miss you too. I have just been on the e-mail long enough to catch up on the posts for both lists I am involved in and don't take much time to catch up with other friends. I need to stop and do that more often. Kelli too has put on some weight in the last 6 months. I am not complaining too much because there for a while, she was stuck and even losing weight. She lost a total of 13 pounds in less than a years time. It is just that her belly is so miserable right now and she wears her pants in the same place Holly does. It really worried me at first, but we have a fantastic family doctor and he looked at Kelli, felt her belly and said " Don't worry Mom, I really think it is just the steroids and slow gut (things not moving thru the GI system quite as fast as they should because of the steroids). " He keeps an eye out for her and talks about her case all the time. How is Holly doing??? Our new Rheumatologist pulled Kelli's Systemic JRA diagnosis in December, because she has had arthralgia but not arthritis and because of some of the numerous other symptoms she has had. He has even seen the bright red and swollen joints, and doesn't feel comfortable diagnosing her with the Systemic. He said probably any other Rheumatologist would, but that doesn't mean it would be the proper one. I do have to admit that I get frustrated, but I also want to be patient (Oh how I hate that word) because he has steered us in the right direction up to this point. He is also in close contact with the NIH and has her DNA tested for any and all new periodic fever " diseases " that are being discovered. There is one we are now looking at and will be sending her labs for within the next week or so. It is called Mevalonic Kinase Deficiency Associated Dutch Periodic Fever. Unfortunately, all of the things they are looking at have a kazillion names attached with them. I just wish all our kids didn't have to suffer, but I also know they are lucky to have us as parents. I see kids every day who are borderline abuse cases and realize that they wouldn't survive if they dealt with a chronic illness, because they have uninvolved, uncaring parents. So sorry to ramble. Take care and I will talk to you soon. Angie Re: A Question About Steroids >Hi Angie, > Well Holly and like to do the same things still i guess. Holly's >belly is the same, she has been on every other day steroids since september, >her longest time ever i think. WE have been trying to taper cause she has >had such a big weight gain, she has gained like 10 lbs since september. >Anyway, her belly looks like kelly's very distended, she has a really hard >time finding clothes to fit, if they fit her belly, they are about a mile too >long. Thank goodness its summer, hopefully we will have better luck with >shorts. She tends to where them kind of around her hips. She has never liked >anything tight around her belly, i think its because her spleen has always >been big. I will try and find some pictures and email them to you, so you can >see the difference between last summer and this summer. > Things have to get easier for you sometime soon hon, i will be praying >for you and kelly and family :-) Email me anytime, i miss you so much!!!! > Aj > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Angie, I believe your doctor has something. For over a year ever time I would menstrate christine would cramp severely that was before her own cycle started. Her old pediatricain dismissed it but as a mother even though she was 10 at the time I knew it was a sign that she was getting ready. Her current doctors believe that the case also. I wonder how long she was having them before I noticed the pattern??? my id is suzzzies2000 if you would like to add me to your friends list and we can hopefully chat sometime. suzie --- Angie <atm87@...> wrote: > Suzie, > > Kelli will be 5 in August and we have been keeping a > journal since this > whole thing started (December 4, 1996). We did have > a GI doctor once tell > us that he had a theory (though never medically > proven according to him) > that even though the girls are young, they still > have cycles of hormones > even at a very early age. We too have often > wondered if it wasn't all > somehow related. > > We are at Day 21 right now and all the signs are > there, the fever just has > not hit yet. I guess we will just be anxiously > waiting. > > E-mail me anytime if you want to " talk " . > > Angie > Re: A Question About Steroids > >> > >> > >> >Scares me too Lynn as Skyler has been on it for > a > >> year and a half. > >> >I gleaned this information after compiling a > series > >> of reports from > >> Georginas database in the last year for the court > >> case we were to go > >> through. I have been reminded that it is not a > >> guarantee, but rather an > >> increased possibility that these side affects can > >> occur. > >> >We need to be informed, but not let fear rule us > on > >> things like this. > >> >What you can do is press them for a more > effective > >> and less dangerous long > >> term medicine, hoping to reduce the pred to bare > >> minimum. We are finally > >> down to just 4 mg daily and he is now starting to > >> grow again and has lost > >> the steroid moon face and tummy bloating. > >> >We went through extreemly bad anemia, to the > point > >> that his body was unable > >> to produce hemoglobin and was depleating what he > did > >> have. We were down to > >> dangerous levels and had to go on ferrous sulfate > in > >> strong doses. We got > >> back to proper levels but he is dropping again > and > >> we need to restart the > >> ferrous sulfate. > >> > > >> >Keep your head up Lynn and know you are a > wonderful > >> parent. It takes a > >> special parent to care for a special child. Vent > >> all you need. lord knows > >> I have shed more tears than I can recall here on > the > >> list. > >> >Our prayers go out to you. > >> > & Skyler > >> > Re: A Question About Steroids > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 Hi again angie, I was just reading your letter and although i should be sleeping, lol, i am up reading my mail, lol, i wanted to say something about the " slow gut " like i said in the previous letter to laura, hollys gi doc is thinking ibs, and put her on bentyl, and the other part that goes along with adding that med, is that she has to have 12-15 mgs of fiber a day, to get things moving in that oh so healthy direction, you may want to watch and see how much fiber kelli gets on a daily basis, i was kinda suprised at how little fiber my kiddos get, so now we are all trying to increase the daily fiber content in our own diets, lol. Also on another tangent, calcium is important too, the rheumie would like 1200-1500 of calcium, we usually can get that much pretty easy, and i try and be pretty on top of it as well as holly has bone loss in her wrists already. Talk to you soon, AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 , The Enbrel is in short supply because it is difficult to make. They are currently building new plants to make Enbrel. I have also heard they are starting to take new patients again. As far as how long it will keep, there is an expiration date on the box. The Ebrel I picked up last week as an expiration of December of 2002. Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 Suzie, Sorry I haven't been back to you, but we had a horrible episode Monday May 7th, and we had to do steroids and now we have all the " wonderful " side effects from them. Oh well, they at least brought the fever from 106+ to normal within a matter of hours. Please e-mail me anytime, I would love to chat more about our kiddos! Angie Re: A Question About Steroids >> >> >> >> >> >> >Scares me too Lynn as Skyler has been on it for >> a >> >> year and a half. >> >> >I gleaned this information after compiling a >> series >> >> of reports from >> >> Georginas database in the last year for the court >> >> case we were to go >> >> through. I have been reminded that it is not a >> >> guarantee, but rather an >> >> increased possibility that these side affects can >> >> occur. >> >> >We need to be informed, but not let fear rule us >> on >> >> things like this. >> >> >What you can do is press them for a more >> effective >> >> and less dangerous long >> >> term medicine, hoping to reduce the pred to bare >> >> minimum. We are finally >> >> down to just 4 mg daily and he is now starting to >> >> grow again and has lost >> >> the steroid moon face and tummy bloating. >> >> >We went through extreemly bad anemia, to the >> point >> >> that his body was unable >> >> to produce hemoglobin and was depleating what he >> did >> >> have. We were down to >> >> dangerous levels and had to go on ferrous sulfate >> in >> >> strong doses. We got >> >> back to proper levels but he is dropping again >> and >> >> we need to restart the >> >> ferrous sulfate. >> >> > >> >> >Keep your head up Lynn and know you are a >> wonderful >> >> parent. It takes a >> >> special parent to care for a special child. Vent >> >> all you need. lord knows >> >> I have shed more tears than I can recall here on >> the >> >> list. >> >> >Our prayers go out to you. >> >> > & Skyler >> >> > Re: A Question About Steroids >> >=== message truncated === > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Hi Angie, I hope everything has settled down by now. At least for the time being. How's Kelli doing? Aloha, Georgina > > Sorry I haven't been back to you, but we had a horrible episode Monday May > 7th, and we had to do steroids and now we have all the " wonderful " side > effects from them. Oh well, they at least brought the fever from 106+ to > normal within a matter of hours. > > Please e-mail me anytime, I would love to chat more about our kiddos! > > Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Georgina, Thanks for asking, Kelli is doing much better. We just came back from her Preschool graduation and I'm happy she was having a good day. Talk to you soon. Angie Re: A Question About Steroids >Hi Angie, > >I hope everything has settled down by now. At least for the time being. >How's Kelli doing? > >Aloha, >Georgina > >> >> Sorry I haven't been back to you, but we had a horrible episode Monday May >> 7th, and we had to do steroids and now we have all the " wonderful " side >> effects from them. Oh well, they at least brought the fever from 106+ to >> normal within a matter of hours. >> >> Please e-mail me anytime, I would love to chat more about our kiddos! >> >> Angie > >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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