Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 I don’t think that is a silly question. Our rheumy seemed quite concerned about it actually. My dd said that her chest hurt to touch for a couple of weeks and then she said it hurt to breathe. Not to worry you or anything. We did not have her on certain medications cause I do not like them and didn’t want to go that route. Natural remedies just don’t work alone with this disease and my dd so the rheumy finally told me that I *had* to let her have prednisone cause she was having trouble breathing. He said the little joints in her ribs were inflamed or something like that. I am not sure of others experiences but I do know that in her case, she has polyJra and when left alone (like it is now, ( ) it covers her whole body and one day she almost drown in the tub cause she couldn’t make herself sit up after leaning back. That was really scary. Sorry to put all that in this email, I guess I am just remembering agbain what it is like in the wake of another flair going on right now. We *have* to get her on Enbrel soon and it is sitting in my fridge, just sitting there, just can’t seem to coordinate with the dr. for a darn appt. I wish I could just go ahead and give it to her. It’s not like I don’t know how. Ok, so this was more then you wanted to know, lol. Sorry about that. ) LorieJo mama to Liberty age 4 poly JRA Ribs? One more question........ Can a child's ribs be affected by JRA? has complained that it feels like her ribs (or touching that area) feels like it is bruised, when in fact it is not ~ she is very tender there to the touch. Silly question, just wondering??? TTFN Dee Dee ('s Mom) For links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html Your use of is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 We *have* to > get her on Enbrel soon and it is sitting in my > fridge, just sitting > there, just can't seem to coordinate with the dr. > for a darn appt. I > wish I could just go ahead and give it to her. It's > not like I don't > know how. > Ok, so this was more then you wanted to know, lol. > Sorry about that. ) > Okay............THIS may seem like a silly question.....If you have the ENBREL, WHY can't you give it to her??? WHY do you need an appt. with the dr? Maybe it's too early in the morning, or I missed something, but if you know how to give injections, what's the problem???? Isabel __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Isabel, That's exactly what I am thinking. LOL, it's not too early in the morning, you did hear me right. They said the first injection *must* be given in a dr. setting so that they can watch for reactions and so that they can see that I in fact know what I am doing. I have watched the video that came with it too. I even called her regular pedi yesterday to ask if I could come there and give it but since he is unfamiliar with the drug, he is uncomfortable with that situation. Oh phew! I was going to set up a time to go and see a friend that is an LPN and knows how to do this too, I am just afraid I will get into " trouble " if I don't follow the Rheumy's advice. I mean, what happens if she does have a reaction? And then it started to snow, and is still snowing and they live way out in the country. :-( I have too much Enbrel waiting and we finally have it and I know there are other kids who need it too so I wish that I could use it or give it all away and just get it again here in the next week. We have already had it for 3 weeks, plus we got some free from a very trusted friend whose husband could no longer take it when they found out he has brain cancer. Seems that Enbrel excelerates diseases like that. Anyway, that's that I guess. LorieJo mama to Liberty age 4 poly JRA RE: Ribs? We *have* to > get her on Enbrel soon and it is sitting in my > fridge, just sitting > there, just can't seem to coordinate with the dr. > for a darn appt. I > wish I could just go ahead and give it to her. It's > not like I don't > know how. > Ok, so this was more then you wanted to know, lol. > Sorry about that. ) > Okay............THIS may seem like a silly question.....If you have the ENBREL, WHY can't you give it to her??? WHY do you need an appt. with the dr? Maybe it's too early in the morning, or I missed something, but if you know how to give injections, what's the problem???? Isabel __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Amy had Enbrel injections for almost two years when she developed an allergy to it. She now has to take Benedryl right before the injection to counteract the reaction. My understanding of it is that she is not allergic to the Enbrel, just something in the solution, maybe the preservative. The first shot I had to give her after she became allergic(and a trip to the emergency room) was in the doctor's office so that they could monitor her for shortness of breath, etc. > Isabel, > > That's exactly what I am thinking. LOL, it's not too early in the > morning, you did hear me right. They said the first injection *must* be > given in a dr. setting so that they can watch for reactions and so that > they can see that I in fact know what I am doing. I have watched the > video that came with it too. I even called her regular pedi yesterday to > ask if I could come there and give it but since he is unfamiliar with > the drug, he is uncomfortable with that situation. Oh phew! I was going > to set up a time to go and see a friend that is an LPN and knows how to > do this too, I am just afraid I will get into " trouble " if I don't > follow the Rheumy's advice. I mean, what happens if she does have a > reaction? And then it started to snow, and is still snowing and they > live way out in the country. :-( > > I have too much Enbrel waiting and we finally have it and I know there > are other kids who need it too so I wish that I could use it or give it > all away and just get it again here in the next week. We have already > had it for 3 weeks, plus we got some free from a very trusted friend > whose husband could no longer take it when they found out he has brain > cancer. Seems that Enbrel excelerates diseases like that. > > Anyway, that's that I guess. > > LorieJo mama to Liberty age 4 poly JRA > > > > RE: Ribs? > > > We *have* to > > get her on Enbrel soon and it is sitting in my > > fridge, just sitting > > there, just can't seem to coordinate with the dr. > > for a darn appt. I > > wish I could just go ahead and give it to her. It's > > not like I don't > > know how. > > Ok, so this was more then you wanted to know, lol. > > Sorry about that. ) > > > > > Okay............THIS may seem like a silly > question.....If you have the ENBREL, WHY can't you > give it to her??? WHY do you need an appt. with the > dr? Maybe it's too early in the morning, or I missed > something, but if you know how to give injections, > what's the problem???? > > Isabel > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 --- Lorie Jo <loriejo@...> wrote: > Isabel, > They said the first > injection *must* be > given in a dr. setting so that they can watch for > reactions and so that > they can see that I in fact know what I am doing. I > have watched the > video that came with it too. Hmmmmmmm.............I would consult with your rheumy. No one EVER told me that the first injection had to be done in a dr. setting. Reactions can happen at ANY time, and usually not the first time. Have you given injections before, like mtx? If so, I *really* don't see what the issue is. The only " drug " which I was told had to be done in the hospital is Remicaide (because I asked if *I* could do it, since I am an RN, or if I could have a homecare nurse come out and do it). Hey.........my Enbrel didn't come with a video!!!!!!!!!!!! (not that I really need it!) Good luck, Isabel __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 --- contessa123992000@... wrote: > Amy had Enbrel injections for almost two years when > she developed an > allergy to it. She now has to take Benedryl right > before the > injection to counteract the reaction. My > understanding of it is that > she is not allergic to the Enbrel, just something in > the solution, > maybe the preservative. > > The first shot I had to give her after she became > allergic(and a trip > to the emergency room) was in the doctor's office so > that they could > monitor her for shortness of breath, etc. > > > I think in general, allergic reacions occur AFTER exposure to the " allergen " so it is less likely to have an allergic reaction for the first injection. Of course it can happen, but not as likely. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Hey.........my Enbrel didn't come with a video!!!!!!!!!!!! (not that I really need it!) LOL, I got a box of stuff from the Rheumy about the Enbrel, including the video and a boiwaste container and other things. I have never given mtx. by injection. So maybe they are not confident that I can give one. Hmmmmm.. I just don't know. But I am going to find a way to give it to her this week that's for sure. LorieJo mama to Liberty age 4 poly JRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 I am sorry but i must say something here..for one thing..your rheumy has a responsiblity to make sure that you are capable of giving these injections..they taught me how to do it..they had home nursing come in and give Tabitha these shots..4 times and the 5th time they came..the nurse watched me give it to her..to make sure i mixed it right and everything..you need to call the rheumy and tell him that you need someone to show you how to do the injections until you are comfortable with it. Because it your child senses that you are nervous..they will become nervous also. Tabs rheumy has a head nurse who works with him..who also showed us how to do it..and monitored Tabs first injection... Good Luck and hope all goes well karen(tabitha16..poly) From: Lorie Jo <loriejo@...> Reply- Subject: RE: Ribs? Date: Wed, 28 Nov 2001 12:16:53 -0600 Isabel, That's exactly what I am thinking. LOL, it's not too early in the morning, you did hear me right. They said the first injection *must* be given in a dr. setting so that they can watch for reactions and so that they can see that I in fact know what I am doing. I have watched the video that came with it too. I even called her regular pedi yesterday to ask if I could come there and give it but since he is unfamiliar with the drug, he is uncomfortable with that situation. Oh phew! I was going to set up a time to go and see a friend that is an LPN and knows how to do this too, I am just afraid I will get into " trouble " if I don't follow the Rheumy's advice. I mean, what happens if she does have a reaction? And then it started to snow, and is still snowing and they live way out in the country. :-( I have too much Enbrel waiting and we finally have it and I know there are other kids who need it too so I wish that I could use it or give it all away and just get it again here in the next week. We have already had it for 3 weeks, plus we got some free from a very trusted friend whose husband could no longer take it when they found out he has brain cancer. Seems that Enbrel excelerates diseases like that. Anyway, that's that I guess. LorieJo mama to Liberty age 4 poly JRA RE: Ribs? We *have* to > get her on Enbrel soon and it is sitting in my > fridge, just sitting > there, just can't seem to coordinate with the dr. > for a darn appt. I > wish I could just go ahead and give it to her. It's > not like I don't > know how. > Ok, so this was more then you wanted to know, lol. > Sorry about that. ) > Okay............THIS may seem like a silly question.....If you have the ENBREL, WHY can't you give it to her??? WHY do you need an appt. with the dr? Maybe it's too early in the morning, or I missed something, but if you know how to give injections, what's the problem???? Isabel __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Yes, I do agree and that's why I haven't given it to her yet. I mean it's not like I am giving cold medicine or something simple like that. ;o) So, I really know better. Though it *has* been 3 weeks already and he did say that he wanted it given asap. So, what I am thinking about doing is going ahead and taking the meds up to the dr's and (not rudely of course) just waiting until they can find a time to get us in there or maybe they will just be able to make me an actual appointment since we can't seem to do that by phone. It's not *too* far of a drive so that is what will probably work out best. The thing is that he is only in appointments on Mondays, other days he is in his lab or in surgeries and such. Most meds days are with the head nurse on Tues and Fri so I am going to try for Friday. ) Does the Enbrel burn? Or just the needle sticks? Just wondering, I am very honest with my 4 year old and the more informed she is the better it is in the long run. I would hate to say that it's only going to be a poke pain if that's not true. Also, if you use emla cream is it, the longer it's on the better (like an hour or more) or say give the shot within 20-30min of applying the emla? I have heard different stories so I was wondering what you think about that. Thanks. I hope it all goes well too. LorieJo mama to Liberty age 4 poly JRA RE: Ribs? I am sorry but i must say something here..for one thing..your rheumy has a responsiblity to make sure that you are capable of giving these injections..they taught me how to do it..they had home nursing come in and give Tabitha these shots..4 times and the 5th time they came..the nurse watched me give it to her..to make sure i mixed it right and everything..you need to call the rheumy and tell him that you need someone to show you how to do the injections until you are comfortable with it. Because it your child senses that you are nervous..they will become nervous also. Tabs rheumy has a head nurse who works with him..who also showed us how to do it..and monitored Tabs first injection... Good Luck and hope all goes well karen(tabitha16..poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 LoriJo hi i understand what you said has poly and when she first started with the chest pains the doctor did do a ekg just for relief of mind i cant stand over her 24 7 but i do tell her to be careful in what she does do and never feel bad if she needs help Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 My daughter calls her Methotrexate her " stingy shot " and the Enbrel her " not stingy shot " I have always put the EMLA on one hour before, partly because we are a good 35 minutes from the drawing lab and it was just easier to remember one hour in my head, I really don't remember the time frame I was told to use, but I know one hour was ok. > Yes, I do agree and that's why I haven't given it to her yet. I mean > it's not like I am giving cold medicine or something simple like that. > ;o) So, I really know better. Though it *has* been 3 weeks already and > he did say that he wanted it given asap. > So, what I am thinking about doing is going ahead and taking the meds up > to the dr's and (not rudely of course) just waiting until they can find > a time to get us in there or maybe they will just be able to make me an > actual appointment since we can't seem to do that by phone. It's not > *too* far of a drive so that is what will probably work out best. The > thing is that he is only in appointments on Mondays, other days he is in > his lab or in surgeries and such. Most meds days are with the head nurse > on Tues and Fri so I am going to try for Friday. ) > > Does the Enbrel burn? Or just the needle sticks? Just wondering, I am > very honest with my 4 year old and the more informed she is the better > it is in the long run. I would hate to say that it's only going to be a > poke pain if that's not true. Also, if you use emla cream is it, the > longer it's on the better (like an hour or more) or say give the shot > within 20-30min of applying the emla? I have heard different stories so > I was wondering what you think about that. > > Thanks. I hope it all goes well too. > > > LorieJo mama to Liberty age 4 poly JRA > > > > RE: Ribs? > > I am sorry but i must say something here..for one thing..your rheumy has > a > responsiblity to make sure that you are capable of giving these > injections..they taught me how to do it..they had home nursing come in > and > give Tabitha these shots..4 times and the 5th time they came..the nurse > watched me give it to her..to make sure i mixed it right and > everything..you > need to call the rheumy and tell him that you need someone to show you > how > to do the injections until you are comfortable with it. Because it your > child senses that you are nervous..they will become nervous also. Tabs > rheumy has a head nurse who works with him..who also showed us how to do > > it..and monitored Tabs first injection... > Good Luck and hope all goes well > karen(tabitha16..poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 your right when i first started giving shots at home to my son for his asthma the dr made sure i took a class then i was giving my hubby his shot different needles my hubbys was a 23 gauge needle the dr asked if i could handle it and hubby said she sure can lolol shes gave shots before the doctor laughed and said well make sure you dont make her mad before you get yours lololol he had to take testosterone shots Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Bonnie thats how started one day doing good then wham it hit her today she can do what she wants as long as she doesnt over do it still having flares but we take it one day at a time Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Lori Jo, why is the enbrel sitting in your fridge? Didn't they tell you how much to give her? Do you know how to give an injection? My daughter finds that the enbrel doesn't hurt going in at all. She does say that the mtx does sting somewhat. With enbrel we were able to get my daughter off all pred which is wonderful. By the way, for those who remember me, I was going nuts almost 2 years ago. Alana, just 14 at the time, came home one day and couldn't move, this active girl suddenly couldn't move. I tried all types of alternatives since this is what I do for a living, but, we just couldn't stop this disease. The pred and mtx did a little bit but until the enbrel came into the picture she had a tough time. I have to tell you that its now 2 years. My beautiful daughter is now doing wonderful. I can't believe it, she wasn't able to walk a few feet 2 years ago and just yesterday she ran a half mile and did an entire kickboxing class at the health club. it's quite amazing. Sure, she's on these drugs that make me nuts, but as long as she keeps exercising a few times a week she feels great. Sorry for the long story. Bonnie PHD Products, Inchttp://phdproducts.com 1-800-863-3403 RE: Ribs? I don’t think that is a silly question. Our rheumy seemed quite concerned about it actually. My dd said that her chest hurt to touch for a couple of weeks and then she said it hurt to breathe. Not to worry you or anything. We did not have her on certain medications cause I do not like them and didn’t want to go that route. Natural remedies just don’t work alone with this disease and my dd so the rheumy finally told me that I *had* to let her have prednisone cause she was having trouble breathing. He said the little joints in her ribs were inflamed or something like that. I am not sure of others experiences but I do know that in her case, she has polyJra and when left alone (like it is now, ( ) it covers her whole body and one day she almost drown in the tub cause she couldn’t make herself sit up after leaning back. That was really scary. Sorry to put all that in this email, I guess I am just remembering agbain what it is like in the wake of another flair going on right now. We *have* to get her on Enbrel soon and it is sitting in my fridge, just sitting there, just can’t seem to coordinate with the dr. for a darn appt. I wish I could just go ahead and give it to her. It’s not like I don’t know how. Ok, so this was more then you wanted to know, lol. Sorry about that. ) LorieJo mama to Liberty age 4 poly JRA -----Original Message-----From: deedit1112@... [mailto:deedit1112@...] Sent: Tuesday, November 27, 2001 12:39 AM Subject: Ribs? One more question........ Can a child's ribs be affected by JRA? has complained that it feels like her ribs (or touching that area) feels like it is bruised, when in fact it is not ~ she is very tender there to the touch. Silly question, just wondering??? TTFN Dee Dee ('s Mom) For links to websites about arthritis and JRA, 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 28, 2001 Report Share Posted November 28, 2001 Oh cool. Thanks for the information there, very helpful. ) 1 hour sounds good then. LorieJo mama to Liberty age 4 poly JRA RE: Ribs? > > I am sorry but i must say something here..for one thing..your rheumy has > a > responsiblity to make sure that you are capable of giving these > injections..they taught me how to do it..they had home nursing come in > and > give Tabitha these shots..4 times and the 5th time they came..the nurse > watched me give it to her..to make sure i mixed it right and > everything..you > need to call the rheumy and tell him that you need someone to show you > how > to do the injections until you are comfortable with it. Because it your > child senses that you are nervous..they will become nervous also. Tabs > rheumy has a head nurse who works with him..who also showed us how to do > > it..and monitored Tabs first injection... > Good Luck and hope all goes well > karen(tabitha16..poly) For links to websites about arthritis and JRA, 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 28, 2001 Report Share Posted November 28, 2001 Lori , when I started Embrel injections I didn't even see the doctor that day I just went to the office with no appointment and the nurse took me step by step through giving the injection to myself and then she made me wait for 30 minutes to make sure there was no reaction and the rest was up to me ...hope this helps :):)Tree:):) RE: Ribs? Yes, I do agree and that's why I haven't given it to her yet. I meanit's not like I am giving cold medicine or something simple like that.;o) So, I really know better. Though it *has* been 3 weeks already andhe did say that he wanted it given asap.So, what I am thinking about doing is going ahead and taking the meds upto the dr's and (not rudely of course) just waiting until they can finda time to get us in there or maybe they will just be able to make me anactual appointment since we can't seem to do that by phone. It's not*too* far of a drive so that is what will probably work out best. Thething is that he is only in appointments on Mondays, other days he is inhis lab or in surgeries and such. Most meds days are with the head nurseon Tues and Fri so I am going to try for Friday. )Does the Enbrel burn? Or just the needle sticks? Just wondering, I amvery honest with my 4 year old and the more informed she is the betterit is in the long run. I would hate to say that it's only going to be apoke pain if that's not true. Also, if you use emla cream is it, thelonger it's on the better (like an hour or more) or say give the shotwithin 20-30min of applying the emla? I have heard different stories soI was wondering what you think about that.Thanks. I hope it all goes well too.LorieJo mama to Liberty age 4 poly JRA-----Original Message-----From: karens tribe [mailto:nutsomom5@...]Sent: Wednesday, November 28, 2001 1:41 PM Subject: RE: Ribs?I am sorry but i must say something here..for one thing..your rheumy hasaresponsiblity to make sure that you are capable of giving theseinjections..they taught me how to do it..they had home nursing come inandgive Tabitha these shots..4 times and the 5th time they came..the nursewatched me give it to her..to make sure i mixed it right andeverything..youneed to call the rheumy and tell him that you need someone to show youhowto do the injections until you are comfortable with it. Because it yourchild senses that you are nervous..they will become nervous also. Tabsrheumy has a head nurse who works with him..who also showed us how to doit..and monitored Tabs first injection...Good Luck and hope all goes wellkaren(tabitha16..poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Robbin..i have to give you credit..with all you take on with your daughter..you still take care of other people who are sick and need you.From me reading your letters..i have come to the conclusion that you are a very special person and an amazing one at that..thank God for people like you!!!!!!!!Have a great day! karen(tab16..poly) From: Robbin40@... Reply- Subject: Re: Ribs? Date: Wed, 28 Nov 2001 20:59:01 EST your right when i first started giving shots at home to my son for his asthma the dr made sure i took a class then i was giving my hubby his shot different needles my hubbys was a 23 gauge needle the dr asked if i could handle it and hubby said she sure can lolol shes gave shots before the doctor laughed and said well make sure you dont make her mad before you get yours lololol he had to take testosterone shots Robbin _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 thanks but it comes naturally to me you also are special Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2011 Report Share Posted June 30, 2011 I dont, but an experienced doc currently applying ET w/ EDF should. Im pretty sure that a doc unfamiliar/untrained in ET w/ EDF probably wouldnt consider a cast. But ya never know! ET seems to be the hot topic these days! HRH > I forgot to mention before that the xrays showed that Breese does not > appear to have her 12th ribs or they are very hypoplastic. I have not read > anything about this with the scoliosis. Does anyone have any experience > with this at all? > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.